This week John had a minor surgical procedure, but since this is us we're talking about, it sure didn't seem all that minor. Not to mention any time someone cuts on you and you're awake at the time, that's a pretty big deal in my book.
The procedure was to take a bump off John's back, and he's actually had it done before. Problem was, last time he passed out on the table and had a minor seizure from the pain, and I was holding his hand and generally freaking right the heck out at the time.
Needless to say, it was a traumatic experience for both of us.
So this time, when the lousy bump grew back and was causing John enough pain to require another removal, we were both pretty hesitant. Especially when the new doctor refused to put him under/out. (I still don't get that; they can knock you out at the dentist's - why not the surgeon's office?!) Instead, the surgeon prescribed John one Valium. One.
John nearly cancelled the procedure when we picked up the Valium and were informed it was a pretty low dose, but by this point his bump had somehow gotten infected (I know that's a lovely mental image - sorry) and was too painful to ignore. So, he went through with it.
Aaaand...it went Ok! The Valium made him woozy and I think helped keep him conscious. I also stayed out of the room this time, since John claimed I was making him nervous. (Like everyone doesn't alternate between hand-wringing and glaring daggers at the doctor. WHAT.) He tells me the first cut nearly made him black out, but they had smelling salts and more numbing shots on hand, so after that things went Ok.
After the procedure the doctor prescribed John some pain kills. Specifically, he prescribed 35 Percocets, which have oxycodone in them. Fairly heavy-duty stuff. Funny thing is, these drugs put John out more than the Valium did! Makes me wish they'd given him one of those instead.
Still, John hates the pain pills. HATES them. They make him muddled and sleepy, so he's already switched to OTC stuff for the pain. (But on the plus side, now we have a starter pack for any future drug addictions we want to start!) (Kidding, kidding...)
Speaking of which, thanks to his stitches John now has a small pair of lips on his back. It's disgustingly hilarious. I'd show you a picture, but I'm pretty sure you REALLY don't want to see that. Hee.
And now that John has survived *his* medical ordeal, it's my turn. Like John, I had a procedure several years ago that just hasn't worked, and I think it's time for a do-over. In my case, it's your standard my-uterus-is-trying-to-kill-me stuff, and the procedure I had was an endometrial ablation, aka NovaSure. In a nutshell, the doctor scraped out my uterus and then cauterized it. (Mercifully, I was unconscious at the time.)
I had limited success with the NovaSure. It's certainly nice to not have the ultra heavy bleeding every month (or any bleeding at all), but the pain and cramping were only alleviated a little - and have steadily been increasing to their pre-surgery levels ever since. I'm incapacitated for 5 to 6 days every month from the pain and fatigue, and lately I've started to have sharp stabbing pains that make me gasp, as well. It's probably just fibroids growing back, but since I want this over and done with this time I think I'm going to ask for a hysterectomy.
Trouble is, I'm scared spitless of doctors and medical procedures in general. Part of it is from seeing so many clueless and/or condescending doctors over the past five years, searching in vain for a diagnosis for my sudden-onset anxiety. (None of them helped, btw. I had to find my answers on my own.) The other, larger part, is because the last time I went to an OB-GYN she performed an endometrial biopsy on me instead of the pap smear I was expecting.
[Last chance to turn back if you're squeamish!]
If you don't know what that is (because I sure didn't), an endometrial biopsy involves the doctor using a long metal hook to rip out pieces of your uterine lining - while you're awake and completely unmedicated. I'm sure you moms out there have probably experienced worse, but I don't mind telling you it was the most painful thing I've ever experienced - and made more so by the fact that I was expecting the little pinch of a pap, not...that. I could *feel* my insides tearing, and it just...kept...going. (I later learned the doctor ripped out three separate pieces of my lining.)
John was in the room, but shut away behind a sheet because the doctor wouldn't let him see me. So all he could do was stand there, helpless, and listen to me crying out in pain and asking what was happening and begging the doctor to stop.
I'm sorry. I'm actually crying right now, because I can't think about this experience without reliving it. That day, I didn't stop sobbing for a solid six hours. I couldn't. I was incoherent, hysterical, and John nearly had to carry me out to the car. It wasn't so much the pain, although that was still pretty bad - it was the violation. And because I was a good, cowed little patient, I laid there and took it without fighting back. To this day, that thought fills me with anger and shame. I want to go back in time and scream at the doctor, to demand that she stop - to kick and fight to make her stop.
I know it's wrong, but I haven't been to an OB-GYN since. I can't stand the thought of getting into that paper gown again, of letting a stranger near me again. I'm not sure how I'll ever be able to again.
When John was finally allowed through the sheet to see me, he asked the doctor in bewilderment for an explanation, since we were only there for a pap smear. The doctor seemed flustered, and started to argue we were there for the biopsy - and then that it was necessary, anyway, because I'd complained of period pain. So she either mixed up my paperwork or intentionally withheld information about the test beforehand. I've often wondered since which would be worse, and if it even matters at this point.
We later filed a report/complaint with the state medical board, but it was dismissed. I guess performing unnecessary tests without patient permission isn't a crime, no matter how traumatizing it is. So the doctor was never held accountable - although she abruptly left the practice not long after my biopsy. Sometimes I wonder if that was related.
I'm not really sure why I'm telling you guys all this, other than to just sort through my feelings and try to face the fear of my new doctor's appointment next Friday. I'm scared, but the pain's kept me awake and doubled-over for two days now, and I know it will be back next month, and the month after that, until I do something about it. John tells me to focus on the "after," when all this is over and it won't hurt anymore, and I'm trying. In the meantime, though, I'll have to take an emergency Xanax - which I hate - just to get through the office visit, and then another for the blood work and ultrasounds, because in addition to the biopsy I'll also be reliving my ER visit from five years ago, and the four torturous days in the hospital after that, and all the specialist's waiting rooms and the needle pricks and the scent of antiseptic and the fear of the unknown as one more doctor tells me he doesn't know what's wrong, but here, try these pills now.
Yeesh. I'm such a mess.
But, at least I'm a mess that has John.
I nearly went to that OB-GYN by myself, you know, the day of the ambush/biopsy. It was supposed to be just a routine yearly check-up, and I remember saying so to John. No big deal, I'll just drive myself. But he was home anyway and offered to take me. I can't even imagine how much worse it would have been without him there - if only because I never would have made it home on my own.
After that day John swore I would never see a doctor without him ever again. Yes, even the dentist. Even the chiropractor, who we see once or twice a month. And he doesn't wait in the waiting room, guys; I'm talking he sees the doctor with me. In the exam room. Office personnel will comment on it sometimes. Most think it's odd, a few huff and glare, and a few think it's sweet. I think it's necessary. And, with John there, maybe I can get through this.
If you made it this far, thanks for reading. I guess it's pretty obvious that this post was just for me and my own benefit, but maybe there's a point in here somewhere. You know, something like "Love conquers all," or "[some] doctors suck," or "we're all human and we're all scared sometimes, and sometimes that's ok." Maybe all of that.
And maybe, if you're scared too, we can talk in the comments and remember we're not so alone, you and I.
Maybe.
[Update: I'm reading through comments as fast as I can with all these grateful tears in my eyes. Please be patient if you've commented - I'm stopping to respond to a few every now and then, so it might take a few extra minutes for them to be published. Also, I see now I was too harsh with my 'doctors suck' quip - I know there are good ones out there, and I appreciate everyone out there in the medical field who truly cares about their patients. So please, just ignore that bit. I'm a doofus.]
I had a hysterectomy a few years ago, and I'm here to tell you how awesome it is.
ReplyDelete1. When I woke up after the surgery, I wanted to go jogging. I don't jog. Ever. But I wanted to, and it wasn't the drugs making me feel that way, because as soon as I woke up, all I needed was tylenol.
2. I had one pap smear after the surgery, and since it was clean, my doctor said I never had to have one again. And I only have to visit the lady parts doctor once every 3 years. (Mine was a total hysterectomy)
3. Every once in a while, just for kicks, I walk down the feminine protection aisle, and laugh. (My husband just rolls his eyes when I turn that way). Yep, I never need to worry about that again.
4. The pain, which once caused me to pass out in front of my classroom full of 5th graders, is gone. Completely, 100%, never to return.
5. You're 100% less likely to get certain types of cancer.
Stay strong, because it is all worth it. And John will be there when you wake up, holding your hand.
Thanks... Your post left me strangely calm. I'm facing my own medically induced anxiety this week. It's good to know I'm not the only one.
ReplyDeleteI'm so sorry you've had to go through all that. I've had a couple of bad gyn experiences myself. When I had the Mirena IUD put in, there was no mention anywhere in the literature or from the doctor about how painful it would be. It was merciless pain, and I literally lay on the table for 20 minutes afterward because I couldn't get up and walk. It's supposed to come out next year and I'm pretty scared about it. I can't imagine it will hurt any less coming out than it did going it. So, yeah, I'll be scared with you.
ReplyDeleteOh Jen, I really feel for you. I too, have a uterus that is trying to kill me and have run the gamut of medical providers who have no idea what the problem is, so I can understand how you feel. I don't have any magical advice to offer, but I'm glad that you have the support of your wonderful John. I hope things improve for you.
ReplyDeleteOh, Jen! Your story just about has me in tears! That is just horrible! I have been blessed to have had 2 very good OB-GYNs who talked me through any procedures & were as gentle as possible. After 2 kids (the first of which was a terrible horrible labor experience equaling 42 1/2 hours in hard labor), I can understand your fear! Not sure if you believe in God or anything, but I do & I'll be praying for you during your appointment! I hope things go much better for you this time.
ReplyDeleteSometimes just sharing a fear can help you deal with it & anyone who comments on here should respect your openness in sharing! If more people were open with each other, there'd be less hate & confusion in the world!
Okay so I didn't read the whole thing because I'm squeamish but that is crazy~!
ReplyDeleteI have a really bad time with doctors. I faint at the sight of blood, (if I cut myself I have to put my head between my knees and I instantly go woozy), I can't deal with needles and I hate doctors.
I've also had a fairly traumatic dental experience where the dentist tried to do a root canal without anesthesia. So I'm scarred from that too.
I always say that if there is a medical emergency, then I'm the last person you need! I'm so sorry you are going through all of this and I hope things get better!
I'm so sorry. I have been there. I had the ablation done and within two years I was back to both the pain and the heavy bleeding. I had a partial hysterectomy and it was the best thing I ever did. No more bleeding and no more pain at all.
ReplyDeleteWhen they do the surgery if you have adhesions they can take care of that at the same time, that's what they did with mine. I hope you find a better ob/gyn because that last one sounds horrible.Good luck and hope you feel better soon
Jen, hang in there. I haven't been to an OB ever because I'm so afraid, and this post won't make it easier, but I know I should. But you're not alone. I have to go to the dentist with my sister because she needs a Xanax, happy gas, frequent breaks, AND someone to hold her hand.
ReplyDeleteI am glad to know people are the same way about doctors as I am. I had to deal with a nurse yelling at me because I wanted to go to the clinic instead of my doctor for my pap smear. Ok, I worked in the same building as my doctor(male) and I served the man coffee twice a day. It was just too awkward for me to handle. So this lovely nurse yelled at me when I told her this.
ReplyDeleteI just have a fear of all doctors and requiring tests. I put shit off like no tomorrow.
You definitely are not alone!! I am sorry you had to go through that horror. I recently went through my own GYN nightmare so I know partly how you feel. It's crappy though that you had a procedure done without prior knowledge and were made to feel like you did. You are lucky to have an awesome man by your side. (I have one of my own here!) Try not to let your experience completely sway you from doctors...there are good ones out there! Love the blog too btw!
ReplyDeleteThis is the place, as someone who works in a medically-related field, that I ask people to remember that there is always a top and a bottom of every medical school class. Don't always assume that your doctor was at the top of the class. Though I'm privileged to work with some enormously talented physicians, some, indeed, do suck.
ReplyDeleteOh, Jen, I'm so sorry to hear this. I have terrible anxiety (and I mean actual anxiety that requires medication) and going to any kind of doctor is terrifying. I'm glad you posted this and am glad to see I'm not alone. :'] I sincerely wish you the best of luck with your upcoming appointment/procedure and everything goes easy-breezy. :)
ReplyDeleteI...have so much to say here. To maybe help you feel a little better and a little less alone in that betrayal. But I might need to take a moment to digest and fight off some anger - for my own memories and yours. In the meantime...I can offer a big hug. <3
ReplyDelete@ Anony - Thank you!! I need that light at the end of the tunnel to focus on, so hearing how wonderful it is after a hysterectomy really helps my resolve!
ReplyDelete@ Ellie - I do, and every prayer is GREATLY appreciated. Thank you.
Praying for you through my own tears... Been there... I understand. So grateful you have the comfort and strength of John. You are strong, smart, and not alone. And maybe with any luck you'll come out of this with a really funny story.....
ReplyDeleteOooh, Jen, I feel your pain. Literally. I had an endometrial biopsy two years ago. I was lucky that I didn't have a psychopathic/incompetent doctor like you did, and I was warned before it happened, but it still hurrrrrrrrt. And all they gave me was two advil, which is half of what I take just for normal cramp pain so yeah that didn't exactly help. But three samples?!? That's...urgh. I could barely walk out of the office after just one. Doctors suck. I'll be sending good thoughts your way next Friday.
ReplyDelete*HUGS* I definitely know your fear of doctors and dentists. And also your husband keeping you sane and calm. I will be under going oral surgery soon, and my husband will be deployed from it. I'm scared as all get out.
ReplyDelete*hugs*
I have actually never had issues with the lady doctor, but I just had to tell you how much I love your husband for being such a great guy. I love that he actually goes into the exam room with you. That, to me, is the epitome of awesome. Good luck with your upcoming appointment. I hope you have a more positive experience.
ReplyDeleteJen, I am so sorry that you are having to go through all this dookey. I can't even imagine a doctor doing that ambush thingy.
ReplyDeleteI am an occasional reader, so have don't know your anxiety issue, but I do know that that is not one bit of fun either. It is not apparent to other people and you are alone with your misery.
Anyhoo, I consider the date of my hysterectomy to be Emancipation day. Having a baby did relieve some of the pain and assorted unpleasantries, but the big H was the best, and you can milk the extra attention you get during that time too.
Best of luck to you.
Emma
Aw. Jen and John, you are so not alone. Nothing easy about medicine! After years of humiliating fertility procedures (including the doctor telling us we should just adopt, while my feet were in the freaking stirrups after I'd had to inject myself with hormones for amonth!), I was 4 months pregant when my hubby got diagnosed with a melanoma on his back (from a mole that I had pestered him to get looked at for months!) He had to have a surgery and they took a fist sized chunk out of his back and for a month after we didn't know if it had spread. (So I was 5 months pregnant with the prospect of a hubby with a deadly skin cancer...oh, and the hospital forgot to tell us his results were ok. $($#%&*#$(!!!) Then we had our daughter and she has had major medical issues since then-seizures, blindness, not able to walk or talk. We are making the best of it, as much as we can. But I HATE hospitals. Anyway I am glad you are getting through this, it is horrible and hard but the discomfort is hopefully shorter term. Hang in there my friends. I'm glad you posted and we all support you so much.
ReplyDeleteThat is HORRIBLE!! :( I'm so sorry you had to go through that! I have faced my own surgical issues as I had TWO surgeries to remove a brain tumor in 2002 (they botched the first one and didn't get it all... seriously.) So I understand about NEVER wanting to return to a doctor's office.
ReplyDeleteTake your advocate! (John) - Every patient needs an advocate to watch out for them - it's sad, but true. Outline what you are having done repeatedly with the professional, and demand pain medication. And all of your fans here on your blogs will be happy to pump you up with positive thoughts and prayers before your procedure!
Thinking of you!
:) Mags / MagsGraphics
I have anxiety (GAD) and have actually been using CakeWrecks as a daily 'fun/calming moment' that always helps, but really helps when I am anxious at that moment. Aside from anxiety, I also have a horrible phobia of doctors. I rarely ever go and when I have to, I actually go to the ER instead. Most people think that is weird, but it makes perfect sense to me: no waiting for an appointment, waiting for tests, waiting for results, etc. They do it all right there. I had to have my gallbladder out last year. Scary as hell. Minor, of course, but with anxiety AND an irrational fear of doctors (I don't even have a good reason like you do), it was horrible. I actually waited 3 years to have it done. It wasn't nearly as bad as I imagined (though it rarely has been for me). Lots of luck to you & yes, think of the after.
ReplyDeleteGirl, that is just wrong. Clearly this means you need to eat lots of ice cream and look at steam punk and old cartoons for the next month. The original X Men is on Netflix streaming. Comedy GOLD. Hang in, bringer of confectionary and geeky delights! We are pulling for you!
ReplyDeleteI'm so sorry honey. I really wish they would make doctors and really all medical workers go through sensitivity training yearly. They seem to forget that the rest of us are human and feel.
ReplyDelete*hugs* medical stuff is very scary, especially after being violated that way.
ReplyDeleteI am glad you have a john to be there for you and be your advocate.
my mother had a partial hysterectomy in 1988 and joked about the lovely vacation she had away from the kids.
I hope you both feel better!
You're right, Jen: All doctors SUCK. Even the competent ones. I have similar horror stories that I won't share - simply know you are not alone, dear.
ReplyDeleteI've never commented before, even though I've been reading your blogs for years. I wish that I had something profound to share with you but I don't. Except to say that you are very lucky to have John, but I'm pretty sure you already knew that. Good luck. We're all on your side, Jen.
ReplyDeleteOoooooomigoodness!!
ReplyDeleteNext time you need a doctor...you should interview them first. Tell them your concerns, and bad experiences. I've found that doctors want to PROVE how much better and sensitive they are!
I went in for my first surgery EVER (gall bladder), and they gave me a shot, before hooking me up to ANY monitors, and I stopped breathing...yet, I was still conscious. The nurse and anesthesia person were chattin' it up...while I suffocated. Finally when I started convulsing...they started bagging me, and called me a lightweight. *rolls eyes* I had panic attacks for a YEAR afterwards, and I still can't take any painkillers that give me that heavy feeling...like my breathing is slowed...I panic!
I have had surgery since (sinus)...and I told the surgeon my history, and my anxiety about anesthesia...and he was SO sensitive about it. It all went perfectly.
Oh my dear I totally understand the hate of the obgyn. The last time I went was to get a check up on my paraguard and its been about 3 years. I need to find a new dr who doesn't make me wait for 45min in the waiting room and another 45 in the paper down for the biopsy you got but I had to get it to check out bad cells. When it could be cancerous I'd hope they would be a bit more snappy and caring. My dr thankfully numbed me before hand but I think that was bc I was already spazing. It's so inhumane to leave us alone in those gowns with our thoughts of the most horrible outcomes because really who pictures best case scenarios in those places. So yes my dear you are not alone. But it will be ok and you'll have John and this time he should be holding your hand. Who cares what the dr says.
ReplyDeleteI'm a classic lurker - I think I've maybe commented over at CW once, but OH MY GOSH I have never wanted to hug somebody so bad! You for comfort and John to thank him for being awesome.
ReplyDeleteYou'll be in my prayers as well. Hopefully this will be another case of the anticipation being the worst part!
And keep us updated. I've vacillated on the hysterectomy question for YEARS now.
I know the feeling... the only reason I went back to the GYN this last time is because I was in too much pain not to go. I was literally shaking the entire time. They asked me why, and I said, "two pregnancies ago, my OB failed to listen when I said the baby stopped kicking, forcing me to carry a dead baby in me for three weeks, when she knew I had already had one fetal demise. Last pregnancy, I got pregnant right before I was supposed to have gallbladder surgery. No one would do anything then, even though I begged them to and said I coundlt handle a second trimester miscarriage again. Then I started having awful pains. I knew it was ectopic.. they told me it was intestinal spasms. Intestinal spasms don't make you want to die of pain. Finally I miscarried, but my HCG levels were still up. When I suggested that the continuing pain might mean that I was still having an ectopic pregnancy, they told me I was crazy. They tried to stop my surgery because my HCG was still upand I had to throw a fit and threaten to sue if they didn't take my gallbladder out that instant. Five minutes into surgery, my husband tells me the doctor came out with his hands shaking, and told him my abdomen was full of blood from, you guessed it, an ectopic pregnancy. If they had delayed the surgery, I would have bled out sometime that night.
ReplyDeleteTl, Dr: screw doctors who don't listen. They about killed me two years ago and four years ago, respectively.
What a horrendous experience!! I have never liked doctors, I accept them as a necessary evil but I do my darnedest not to find them necessary in my life. (I had my two kids at home because hospitals freak me the heck out! I'm terrified that I may currently be pregnant with twins because that would me I'd no longer qualify for a home-birth, but that's another story.)
ReplyDeleteOn the off chance that it might help alleviate some of your pain, I'd like to refer you to a blog I found when I was looking for natural ways to relieve my near crippling menstrual pain. There is one stretch that I found on this blog that I found helps IMMENSELY (it helps more to do it regularly/daily but even doing it just because you are currently miserable helps a LOT.) The specific stretch I am referring to is the first one on the page, the double calf stretch. I use a rolled up towel and lean forward and put my hands down on either the seat of a chair or my coffee table. (If your hamstrings are really tight, try doing it without the towel). If it doesn't help, sorry, and if you're not interested in trying them it's no real skin off my nose and I won't be offended (I am, after all, a random internet stranger ;-) I do wish you luck though, either that the procedure becomes unnecessary or that it actually works this time.
Please please please please PLEASE look into Maya massage. It's deep message, specific to reproductive organs, and EXTREMELY helpful-even if you only do it until you can get a hysterectomy. The problems you are having are most likely hormonal-and conventional docs don't know squat about proper hormone balance--so maybe think about talking to some alternative medicine people, naturopathic doctors, herbalists, homeopaths. Ultimately the best thing for the longterm health of your body is to be able leave it intact, and maybe there's a way you can do that--if not, you'll make it to the other side. I'd also recommend (because I am one and I know how awesome we are) looking up some local birth doulas-lots of us are willing to help women through any number of situations, especially when dealing with this kind of fear/anxiety. A doula would have lots of ways to help you through, be able to help ask and answer questions, and give you some counseling about past experiences in order to be better equipped to face future ones--you absolutely were violated (and Jon was too), in the deepest sense of the word, and there's nothing wrong with wanting to protect yourself from every experiencing that again. Crying with you over here.
ReplyDeleteFear can be crippling. I may be a man but have experienced the range of doctors looking at me like I have nothing wrong.
ReplyDeleteTHE best experience I've had was when I went in to see about my migraines (after an ER visit and far too many tylenol). The doc was so sweet and helpful, she UNDERSTOOD my pain and helped me get on a path of migraineless-ness.
My grandma had a full hysterectomy about 10 years ago, she said it was the best thing she ever did for herself and when she talks about it she says she would do it again in a heartbeat if she had to. She had very bad ovarian cysts and the pain was terrible.
Sometimes the little pains we endure lead to better days down the road.
Hope you feel better!
I'm sorry you had such an awful experience, how traumatizing! I had my ob strip my membranes when I was pregnant with my first child, at multiple appointments without telling me. It was painful, but not nearly as bad as what you endured. I don't understand how they can do that. Also, my parents ALWAYS go to all their doctor appointments together, even into the exam rooms. I think it's sweet.
ReplyDeleteI've actually stopped posting so often on my blarg because my doctors are concerned I have bladder cancer and keep putting off actually checking my bladder. It has been four months now. I'm fairly certain it isn't cancer, and I just have another autoimmune disease, this time in my bladder, but after waiting 2 months for my first urologist visit, I was finally seen and they catheterized me in the office, at which time I was told I have a freakishly small urethra and that they would dilate that for me when they scope and do biopsies of my bladder, in a month, no, now in two months... I don't get that, "It might well be cancer" now wait two months for us to check!
ReplyDeleteWhen they cathed me, they tore my pee stuff up. It was like a horror movie, like I had gone and PAID someone to give me the worst UTI of my life. I looked up dilation of the urethra... THEY ARE JUST GOING TO RIP IT BIGGER. I've peed just fine for 35 years. I pee ALL THE TIME. I don't need it bigger!!! And they aren't going to put me out for any of it, though everything I have read says that is what is SUPPOSED to happen. Anyway, I am horrified and terrified, of the procedure and the repetition of "cancer" by my doctors and their lack of urgency in the matter... and I don't like doctors too. That is my point. And sharing makes it feel better, even though I haven't shared it on my own blarg, because it isn't funny, and I don't want to draw illustrations for this. I just want you to know that I feel your pain, probably literally, and being in pain sucks, and I am sorry you have to hurt because you are one of my favorite people in the world.
Definitely praying for you!
ReplyDeleteIf you don't like this OB/GYN, get up and leave. Do it again, and again, and again until you find one you can trust. There are really awesome doctors out there - ones who are honest, whom you can trust, who explain everything and wouldn't bat an eyelash at you wanting John in the room. Find one!
ReplyDeleteI'll start with how lucky you are to have John! Do not feel ashamed or embarrassed by your fears! They are how you feel and that's that. I am so sorry you had such an awful experience, you deserved so much more respect. The would of, should of, could of's are the devil on your shoulder, flick them off and look forward. You are so NOT alone!! If you don't Like(ha autocorrect wrote Luke!) the doctor, find another, keep listening to you instincts and find the one you feel good about. You have a right to smile, say thank you for your time and move on. I also suggest a pre exam meeting so you don't feel vulnerable when meeting for the first time, and no extra awkwardness if you want to not see them again, or they "see" you once. Breath, hold Johns hand and know we are all standing strong with you.
ReplyDeleteOh Jen, Oh Honey. I wish I could kick that butcher too. My own horrible medical nightmare was bilateral myringotomy without any numbing or pain meds. In case you've never heard of one, that's when they cut a hole in your ear drums and suck out any fluid behind them. The doctor's assistant had to hold me down. I screamed. A. lot. I cried. They went on to do the other ear. I wasn't 5 or 6, I was 32. I felt violated and victimized. It does my heart good to know I'm not the only one.
ReplyDeleteSo thank you for sharing and in return I'll tell you that I found another doctor, told him the story, and along with sympathy I got great care. There are good doctors out there. I hope you find one for your surgery. Please, please, please trust your gut, and if anything feels wrong to you walk out and find a new doctor.
I completely understand! I have two phobias: arachnophobia and OB/GYNophobia. My sweet loving man helps me with both. He protects me from the ''uglies'' and goes with me to the OB/GYN... all the way to the exam room with no barrier between us. I guess the reason he's with me the entire time could be that I'm drunk on Xanax. I usually take a double or triple dose. Seems to be the only way I can get up on that table. And being doped up I felt comfortable enough to tell the doctor and his P.A. that I thought they were all a bunch of pervs out to make a buck.
ReplyDeleteThere is nothing weird or strange about wanting John with you when you see the doc. Lot of my patients choose to do that, some choose not to. Depending on the situation, the doc (ours do, anyway) may choose to have spouses in there together anyway.
ReplyDeleteHang in there.
My mom had the hysterectomy procedure done a few years ago. It certainly helped her a lot. Before that, her life was structured around her "death-cycle", and she passed out a few times from the pain. My sisters and I always made sure one of us is around whenever she's having the pains, we never leave her alone. For an independant woman, it made her feel very helpless that she had to depend on us. After the surgery… she is a totally different woman. She plans trips and activites with her bunch buddies and never have to worry about the pain anymore. And yeah, now she giggles whenever she sees us pick up those feminine stuff at the supermarket and says,"ooohhh, what are those?" My youngest sister was diagnosed recently with some growth in one of her fallopian tubes, which causes her to suffer near similiar pains that my mum went through. She had a minor procedure done to remove it, and is now under her ob-gyn's observation to see if it grows back. You have to pick the right ob-gyn, and it won't be a nightmare. It's okay to be scared, it just proves you're normal. I wish you and John the strength to get through this ordeal.
ReplyDeleteI commend on being able to write all of that. I believe that it was horrifyingly painful (I mean me just talking about experiences that only made me a little frustrated at the time, rile me up tremendously these days). And I'm mad at that doctor for what they did, it IS illegal and you could've sued.
ReplyDeleteI really do hope you come to become more relaxed in the future about doctor and dentist visits someday. It took me a while but now, just going to the dentist is routine (until I get cavities, then I believe my dentist is really going to tear out my teeth).
If it makes you feel any better, this wasn't a doctor's visit or anything, but I had gone to a new salon to get a hair straightening treatment (routine relaxing and something else), And I had never felt so much pain on my scalp EVER. If you know about relaxing, it burns, with the added acids of another treatment AND having the woman blow dry my hair at the temperature I believe to be the equivalent of FIRE. Let's just say I left that salon looking fabulous, but my scalp (which is covered in enough hair for 2 people) was burned so badly that it had blistered and scabbed over. The sad part for me is that I cried and everything but the stylist thought I was just sensitive and that burning was normal (the family that accompanied me kept reassuring me that I would look pretty afterwards, so it was okay to endure a little pain). I've never gone back to that salon, and I don't go to salons unless everyone I know who's been there has given it an amazing review. I know that's not as scarring as your experience but it was painful for my standards.
Absolutely have the plumbing removed. You'll never miss it. I had never had a fibroid in my life but when I had my regular exam at age 30, I knew something was up because my OB/GYN requested an intrauterine ultrasound. The tech asked me how long I had been having problems with fibroids. I had her turn the screen around because I couldn't believe it. My doctor was equally shocked. It was a virtual forest of fibroids. I assured him I had not been eating fibroid fertilizer and it was an easy decision to make to have everything removed. I knew from my work experience what the odds were of the fibroids returning. I had a laproscopic procedure and was only a 24 hour admit. I came home and spent one day in the bed. Next day, good as new. Never looked back. And YES! I too have danced down the feminine products isle laughing! You can do this Jen! It is SO WORTH IT!
ReplyDeleteI've been suffering from anxiety for years and can barely walk into a hospital sometimes, so I feel your pain. I am terrified of ever needing surgery of any kind because of having to be "trapped" in the hospital. I am so thankful I found a great ob/gyn after I moved and actually only see her PA, who is even more awesome.
ReplyDeleteNothing has happened to me like you but I have ob/gyns lie to me for years about the side effects from depo-provera. And went through an entire summer of seeing my regular doc every 2 weeks for an 'exam' for a yeast infection that kept returning and it wasn't that at all. Ended up having to find an ob/gyn to get it properly diagnosed.
Actually dentists freak me out more than the ob/gyn. I will probably need a xanax once I force myself to make an appt. that is already a bit overdue.
Good luck! It will be worth it in the end. And witnesses are always a good thing, especially if it's your loving husband.
For some reason my link didn't go through..which means I probably did it wrong so I'll try once more ;-)
ReplyDeletethis should be it
You have now made me grateful for my almost 40 years of not-so-bad periods.
ReplyDeleteI went to the ob/gyn last year for a biopsy and he was awesome, he said that biopsy's hurt like hell and he wouldn't do one without a second ultrasound! Turns out the problem on the first ultrasound was an iud shaped scar - so no biopsy needed. I am very relieved now that I have read your story about them.
I am not squeamish at all. I hope you have a much better experience this time around with the new ob, remember to speak up for yourself or have John do it! You are very lucky to have each other.
Now if we are talking dentist appointments, well, next time I need a root canal, do you think John would come to Canada to hold my hand . . .
Jen, as a future doctor who is considering OB/GYN as a specialty, I am *appalled* that your doctor behaved in such a manner. I'm so sorry your complaint was dismissed because you definitely had grounds for one. As other commenters have said, there are plenty of really excellent doctors out there who are passionate about making sure their patients get the best care ever - and they would let John be right next to you if you needed him.
ReplyDeleteI had the opportunity to observe some gynecological surgeries during an externship a couple of weeks ago, including NovaSure and a couple of hysterectomies. Talk to whichever doctor you end up seeing about robot-assisted or laparoscopy-assisted hysterectomy. You'll have tiny little scars and significantly shorter healing time than with the older surgery where they open you up. I can't guarantee you'll be a candidate because it depends a lot on your body, but they're doing more and more of them and they are much easier on patients.
I'll be praying for you too. You got this, girl. Hang in there! :)
Jen, I have never experienced something as traumatic as what you went through and I certainly see why you fear going to see a doctor. It is also probably a big part of your sudden on-set anxiety, too! I did just come out of a bad relationship with a doctor and I wanted to suggest that, before you let the new doctor put a hand on you, tell them everything that happened to you. You can tell a whole lot about the doctor based on their reaction. If they are appalled, he/she should reassure you that everything will be discussed beforehand and they will let you know what is happening as they do it. If they blow it off, simply tell them you choose not to use them and walk out. As my own (new, wonderful) doctor reminded me just the other day, the doctors are our employees. We can fire them at any time! We pay their bills!
ReplyDeleteYou may also want to think about seeing a counselor about your feelings after the procedure. What you had done to you is very nearly akin to rape. That is a major trauma and it is completely understandable that you have such strong feelings now.
Good luck and I hope you find a wonderful doctor who can give you answers and help you through all of this.
Thanks for posting that. It was like reading my own experience. I was in Atlanta and got blind sided with unnecessary procedures. While I was paying the bill for said torture, passed right out. I had gone by myself. So, I got to sit in the waiting room with people staring for my boyfriend to come get me. I hadn't been to an OB/GYN in almost 10 years till a few months ago. I got married and we want children, so I had to go. Asked every female friend I knew for advice on where to go and got a lead on someone that sounded promising. He's an hour away but it was worth it. He let me sit there and just sob and tell my story of Doctor Evil. He had empathy and made me feel so much better to know that I was right. She violated me and it should not have happened. Weight of the world off my shoulders. Because of my plumbing issues he had to send me to a specialist 2-1/2 hours away and again I was terrified. But, my husband was with me for that trip and he was wonderful (my husband and the doctor). Still no baby for us, but we're still trying. I pray you find a GYN like mine. Before my first appointment, I did look him up online for reviews and they were all positive. That took a bit of the edge off but I was still crazy sobbing nervous. After years of searching, I finally know what my issues are and I'm getting treatment. I watched my mom go through the fibroids and a week in bed every month. She was a brand new woman after they finally took it all out. Hang in there! Praying for you.
ReplyDeleteThat's really horrible that any doctor would treat you so poorly. I will never understand how some doctors think we don't need pain meds. I was really lucky that my partial hysterectomy went so well and all my doctors were really nice. Hope this isn't TMI, but my worst problem was taking the pain meds for too long and ending up terribly constipated.
ReplyDeleteKeep in mind that since You are hiring Them to do a procedure,
You Are The Boss. Demand what you need. Best of Luck and we're all sending good thoughts your way.
I think my best advice is to share your fears and your past experience with your new doctor...When I had a traumatizing birth experience and after care with my first child, I told everybody in the hospital how HORRIBLE that experience was and that I was hoping for a much better experience. Sure enough, I felt like everybody was going out of their way to make *this time* a much much better experience. I'll pray for you, that you find a sensitive and compassionate doc.
ReplyDeleteSeveral of my friends have now had hysterectomies and I hope the next time I start having problems again I can too. Every single one of my friends said they wished they had gotten it done sooner because life is so much better now.
ReplyDeleteI felt that way about my tonsils which I finally got out in my early 30s. Since I am a big girl - my doctors had freaked me out about the dangerous of going under while so big - funny thing was - it was so easy once I did it and I was talking in less than a day!!! I had strep throat pretty much every other month - now nearly 7 years later I have never had a strep throat or even a soar once since the surgery!
I hope all goes well - and my hubby is just like John - he goes with me to anything that causes me anxiety.
You are so not alone, Jen. I'm a big proponent of Planned Parenthood because I support what they do. But in my visits there - when I was too broke to afford insurance or to pay for my yearly exams - I was repeatedly treated like shit (I hope I can say shit here). I was forgotten, I was hurt (like, physically), I was ignored (like, metaphorically), I was simply treated rudely. It was horrible. It wasn't as horrible as what you had to deal with, but I can begin to understand - to a different degree - what you must have been feeling. And I always react later, too. It's OK. It really is. You are an amazing person to share this here. Thank you.
ReplyDeleteI am so so so glad you have John to take care of you! We're taught to trust doctors implicitly and not to speak up when something doesn't seem right, *because they're the experts*. But the fact is the AREN'T all fabulous and wonderful. So we have to advocate for ourselves. But when you suffer from anxiety, that's easier said than done. So I'm glad you have John to protect you. I hope your appointment goes well!!
ReplyDeleteI don't have much to add to the conversation but, nonetheless, major internet hugs!
ReplyDeleteMy husband *always* goes to the doctor with me. Always always always. You never know when you'll be accosted by someone wanting you to pay a bill out of the blue, or a procedure they didn't tell you about...
ReplyDeleteAnyway, I'm 27--I had a hysterectomy done last year, and *boy* was it worth it. (I don't have to carry extra underwear with me everywhere I go!! ^.^) It helps that I have an OB/GYN that I trust implicitly. I know that others aren't so lucky, and I wish that everyone had a doctor that made them feel as safe and cared for as my doctor does! I used to visit another doctor at the same clinic, and he was nice, and he provided good care, but for some reason I didn't always trust him totally. Then one day he was sick and I saw my current doctor for a routine pregnancy visit. I trusted and liked him immediately. I was on the fence for a while about switching doctors (because I felt embarrassed about abandoning my current doctor), but I've never regretted my decision. Ever since I have decided not to EVER settle for a doctor. Under ANY circumstances. It's not worth any amount of money to see a doctor I don't trust, who doesn't make me feel like part of the health care process, and who TRUSTS ME. And that's the big one, I guess.
Wow, that turned into a massive missive, there.
tl;dr I had a hysterectomy too, I was REALLY REALLY scared, but it turned out good in the end, and husbands who go to the doctor with you are *awesome*! I should know, b/c mine does!
I know EXACTLY what you mean when you say how frustrated you are that you can get put under for the dentist but not for minor surgery.
ReplyDeleteWhen I had to have a port-a-cath put in for chemo treatments, my oncologist's nurse told me that I'd be asleep for the procedure. Then I show up the day of and NOPE!
They NEVER put patients under to slice open their chest, and stick a foreign object in that will have a line run DIRECTLY into an artery where the slightest mistake could cause you to bleed out.
Apparently.
I was a hysterical wreck. I thought my wife was going to KILL the surgeon and the OR nurse.
I think that some serious work needs to be done on the Customer Relations side of surgical centers.
SERIOUSLY.
I read your blog all the time, but I've never sent a comment before. I had just finished my own blog post on my own, very similar, medical issues that I'm facing right now and I read your words in tears. However, as someone else said, I also gained some peace. Knowing that you're not alone in your fears is quite powerful and I suddenly feel incredibly less alone, even though you have no idea who I am. I don't have a lot of words of wisdom because I'm trying to find my own, but I wanted to let you know that I understand, I'm going through this with you, and I believe we're both going to come out on the other side okay! ((HUGS))
ReplyDeleteI just wanted to offer internet hugs over invasive doctors. My problem wasn't my uterus, but at one point I was having horrible bladder pains constantly. (Warning for the squeamish!) After seeing multiple doctors I was sent two hours away only to have a q-tip with lidocaine on it shoved into my urethra for five minutes only to be followed by a scope camera, with no warning. I was then told that I had an incurable disease (Interstitial Cystitis) at 26 years old and that I basically had to just deal with it. I sobbed all the way home and for most of the next day. The only treatment plan my local doctor could come up with was a steroid wash for my bladder done once or twice a week by catheter. I did that for nine months. Later that year I saw a new doctor who told me I had been misdiagnosed and sent me to physical therapy for three months, after which I was completely pain free. I know the new doctor was doing her job, but I still cry when I think about how much I feel like I owe her. In my mind she saved my life.
ReplyDeleteIt can get better, and there are awesome doctors out there. I hope things work out for you! Please accept all the internet hugs I can send your way.
Jen,
ReplyDeleteFrom the time I was in high school (late 80's) I have had issues with anemia and my monthly cycle. When I got to my 30's, the anemia got worse and worse, and the bleeding got heavier and heavier. (Like thinking that sleeping on the toilet at night would be a lot easier worse.) I had an iron level in the single digits. I almost had to go through a blood transfusion.
I was afraid to do a hysterectomy. I tried novasure, as you did. It made NO Difference.
I finally had no choice. I was really never stopping bleeding every month. I went in for the hysterectomy. My fear was killing me, and I had lost the ability to travel.
side note - I also apparently at some point recently suffered an umbilical hernia, which the surgeon found while I was on the table.)
In the end, It was the best ting I could have ever done. It solved more than just the obvious.
What I am trying to say is that if I can do it, you can do it. I took my husband with me, and you will take John. USE HIM. Let him take care of you. you do not have to be strong. You can be vulnerable, and YOU WILL be ok.
Wait, more than ok, you will be AWESOME.
Jen, I know I am just one of a million readers but believe me when I say that we are all rooting for you and Jon. No one should have to endure what you both have been through and yet you bare your soul to us who can only read and worry with you. No matter what, take care of yourselves. Post when you are ready (not before) and know that we will always be rooting for you both. I am sending prayers and best wishes to you both.
ReplyDeleteMany, many hugs and much adoration to you and John. Two things to share:
ReplyDelete1) I had a uterine ablation two years ago for heavy bleeding and fibroids (best damn thing I've ever done, honestly) but I know I might need more later (though I'm blissfully period-free). But oh how I hear you on the endometrial biopsy- that was absolutely the worst experience of my life... unmedicated, no children, tiny uterus and cervix to begin with. Gah. Those things are cruel, invasive, and utterly traumatizing even when you are expecting it. It took me a long time to return too, but I found an awesome, gentle ob/gyn. There are some amazingly good ones out there.
2) I have a diagnosed phobia of the dentist but have finally found a suberb dentist and the best meds: Halcion (what they use to mellow people before full anesthesia). It leaves you a little loopy for a day or two but it mellows me the hell out (a SERIOUS feat) and wipes much of the memory of the visit. Add to that one amazing fiance who pets me my foot or leg during and I can actually handle it.
The best thing I can suggest is to shop around (and get Halcion :P). Just make appointments to talk to the doctors, nothing more. If you aren't comfy with them, don't let them touch you.
If you were in CA I'd have a fabulous rec of a gentle ob/gyn who isn't test happy and firmly believes you know your body best. Never, ever met a nicer, better ob/gyn than Kaiser's Amante Pullido in San Bernadino, and that's after years of seeing them for my own troubles and as a professional labor assistant.
I am so sorry you had to endure that horrible OB/GYN. That was completely and totally wrong of her to do anything like that to you at all. I hope you can get past your fear because I am sure that the procedure will totally be worth it. I really wish that I has been able to convince my OB to remove mine after my last baby. I am so sick of dealing with it.
ReplyDeleteI completely understand the fear of the gyno, or any doctor for that matter. I had major surgery when I was younger and have had anxiety about medical procedures and doctor visits ever since. The first time I went to visit an OB/GYN I was a 25 year old bawling mess who had to reschedule because she couldn't stop crying long enough for an exam. I have to say my doctor was amazingly understanding and talked me through what the problems might be and what treatments would be given different scenarios. I think if you find the right doctor who will be upfront and understanding makes the trip much better. You are not alone in your worries. I hope everything goes well. Having John there will certainly help :)
ReplyDeleteOh lord, I want to run through my ethernet and give you a hug, then let you borrow my cat to hug for a while. That OBGYN did not know what she was doing. I am so sorry you had to deal with that and I completely understand why you're not ready to go back.
ReplyDeleteI have a Mierna, which isn't a big deal, but I have no children. They had to dilate my cervix to put it in, which let me tell you, feels like the red hot poker of death. I'm sure it was no where near your level of pain, but for me, that was it. I have to get it replaced this year and am not looking forward to it.
INTERNET HUGS!!!! :(
Jen, I'm so sorry that happened to you. (and I hate doctors too.)
ReplyDelete@ Shawnette - thanks for the advice, I'll keep a doula in mind. And, fortunately, I *have* seen a doc who prescribes bio-identical hormones, which helped a little, but I'm hoping this new doc (who also uses bio-identical HRT) will have a better handle on it. The last doc just said, "follow the dosage instructions in that bk you're reading" !? Which, uh, didn't work. Heheh.
ReplyDeleteJen, Reading your story was enough to make me cry. I too am putting off finding a new doctor (in my case a surgeon) because after my surgeon got done saving my life, he left a huge painful mess that I now have to pay for someone else to fix - not related to lady parts at all fortunately. You are giving me the courage to start that search and in my two years of daily discomfort and body shape issues.
ReplyDeleteI really wanted to share, that my husband Orcrist (he photochopped an image for you not long ago), he goes to every single appointment with me. Into the exam room, every time, unless I ask him not to (because we have kids and someone has to watch them). No one has ever had a problem with it, and no one has ever made him hide behind a sheet, even when I've had a pap, or cervical check, or anything down there. In fact all my doctors require at least one witness and usually have a nurse or two in the room as well. You can always request a nurse as witness, if you feel more comfortable having someone else who can enforce you asking for a stop, they usually stand to your side or shoulder. We are lucky women to have such amazing stand-up husbands.
Hi. I read both Epbot and Cakewrecks every day. They bring smiles to my face. Thank you for that.
ReplyDeleteI am so terribly sorry you're going through this. I, too, know of the pain you are going through. I've got both polycystic ovaries and endometriosis--a medical rarity to have both because one almost omits the menstrual cycles the other feeds on. I've had multiple procedures and endometrial biopsies (without permission, just as you had), botched colon x-rays that left me in tears on a jiggling table with a barium filled balloon up my hind region, several surgeries and whatnot. The worst surgery I had, the surgeon left a metal clamp--the kind that is used to clamp shut bleeding veins and whatnot--inside me. I didn't know it, and I carried that thing for five years. In my body's attempt to eject a foreign body, it taken my uterus and essential stapled it to my right bowel wall. No one found it until TWO surgeries after the first one. No amount of reporting I did had any effect. No amelioration to my now scarred body, and my almost eternally bruised ego. I'm due for another surgery soon, because I'm to the point of constant pain that I can no longer stand upright. Lacking insurance and funds prevents that.
You are not alone in your fears or your experiences. The fears I can understand, we all have them whether they are founded or not. The experiences are something that should never have happened. No one should ever have to go through what you went through, or what I went through, or what anyone else went through. It's ridiculous and an ever increasing black mark on the medical practices of America.
I know you can get through this. You have John. Not all of us are so lucky. Not only do you have John, but you have the support of many other people in similar situations. We're all sitting back here cheering you on screaming silently at the computer screen, "You can do it, Jen! You can! You're better and stronger than this!" And I believe with all of that support and all of that faith holding you up, and the hands of your husband to hold you, my dear, can do ANYTHING. Anything you put your mind to. I realize you don't WANT to do this. Heck, we never WANT to go through surgeries and medical procedures and the risks involved. Sometimes, though, the benefits outweigh the risk. You have my intense commiseration and undying support as a fellow my-uterus-hates-me sister.
If you can gain anything from these comments, gain the knowledge that you are loved and supported by thousands just because of the cheer you bring us each day. Jen, you are amazing and much stronger than you seem to think. Take pride in that. Be well.
--Amanda Kirk
(I'm trying to convince my husband that should we ever have a son, his name should be James.)
I used to be scared of a pap smear, but my husband and I went through 4 years of fertility treatments and three miscarriages, before having our son... I've had surgeries, procedures, the works, on my lady parts. No matter how "normal" all that became, I never became desensitized to it. I got used to it, in a way, but I was still terrified, felt violated, etc... whether it's one bad experience or a hundred, it's normal to be scared of going through something like that.
ReplyDeleteI feel for you. It sucks when your body rebels. Surgery is scary. And being in pain SUCKS. Wishing you strength to see a doctor and to get through this.
Also, my husband went with me to every appointment regarding my lady parts. I needed him as moral support. I think it's great that he goes with you. Good for him!
(((Jen))))I'm so glad you shared your story. Even if it is just for you to let it out. I've had that biopsy so I know some of what you went through,unplanned though not ambushed. That's horrific what you went through. I'm so glad you have John by your side. I go to nearly all of my husbands appt for the same reason, plus with a slight medical knowledge/background I can reason with and understand the doctors explanations better for him. Oh and I was very thankful my husband was with me the day I had that biopsy too. You both will be in my thoughts and prayers.
ReplyDeleteAngieN24
Jen, I am so sorry you were put through that terrible experience. That is horrific and wrong.
ReplyDeleteYou did not ask for advice, but I hope you will forgive me for offering you some. You see, I work for the medical school at a prestigious university. I work with future nurses, doctors, physical therapists, and physician assistants on their bedside manner. The students are now being taught how to listen to patients and how to treat patients with respect because so many doctors have failed in those areas when left to their own devices. What's more, hospitals have learned that medical professionals who have had this type of training get sued less than other doctors.
So. With that said, here's my advice. When you meet this new doctor, tell him or her about the ambush biopsy. Tell the new doctor how that made you feel and DEFINITELY tell them that it made you so frightened you've avoided going to a doctor for years. Make it clear that you want a lot of verbal communication throughout any exam or procedure. Here's the real kicker: watch the doctor as you tell this story. Is he or she paying attention? How is her eye contact? Does she seem sympathetic? Or defensive? Pay attention and listen to your gut. If you don't feel that the doctor was invested in making you feel safe and comfortable, then put your pants on and get out. No need to be polite. Just go.
Good luck! You'll be in my thoughts!
Jen,I'm so sorry you went through this horrible experience. Even if you did actually need the biopsy -at the doctors office I work at patients are required to sign a consent for that procedure after it has been explained to them. What happened to you was definitely not okay and I'm glad you put in a complaint even if not much came out of it. I glad you have John to be there for you and I wish you the best with your future care. *hugs*
ReplyDeleteI'm so sorry you've had to go through such a trauma as this. I've never had to deal with anything like this myself, but I always worry it might happen. I've read so many things where women were "abused" when going into labor from what their doctors were doing to them. My husband's in the Air Force, and we're currently overseas. We've been wanting to try for a baby, but the hospital on base is really my only choice for delivery, and those doctors aren't as well-trained as ones in hospitals back in the US. Most of the people you see for a regular visit aren't even doctors, just assistants or nurses. I worry about something going wrong because they don't know what they're doing, and because of that, I have been putting off getting pregnant.
ReplyDeleteI really hope this goes well for you. You will be in my thoughts.
You are not alone. My simple hernia surgery came with the added bonus of a weird lump that no one could (or would?) explain and sudden onset anxiety. Instead of letting me see the surgeon for a faster follow up, they referred me to an emergency psych. department. (who, by the way, suggested that I just have a follow up with the surgeon.)
ReplyDeleteYou know you have a TON of us out here whose hearts are with you. It would be totally crowded in those rooms if we were all there, so it's best to just stick with John. (((hugs))) and hopes that all the pain and anxiety melts away.
I too completely understand your fears. Take the other posters' advice and interview doctors, and tell them all about your fears and history. Either they'll tell you up front what they think, or if you can read people at all, you'll be able to tell the difference between someone who's telling you the truth and someone who's telling you what you want so they can get your money. And look up recommendations from people in your area who have been treated by those doctors before you commit. There are good people everywhere, fortunately, just as much as there are terrible ones.
ReplyDeleteI'm currently going through somewhat of a terrifying situation myself. My dear fiance has always had weird medical issues, but he hates doctors (and didn't have insurance until less than a year ago) so he hasn't gone to the doctor about anything in a really long time. I convinced him to see a doctor about some weird digestion issues\crippling pain, and the doctor wouldn't get back to him about the results and finally basically told him he was fine (after more than $100 in copays and who knows how much in tests, without finding anything). Finally, he found a new doctor who was willing to work with him and try new things until they figure it out. Well, they sent him in for a CT of his stomach to see if that would tell them anything, and told him they wouldn't send the labs back to the doctor for a week unless something bad showed up. Well, he got a call about a half hour later, saying his stomach looked okay and they can move on to the next test there... but there's something in his lungs. Basically it could either be scar tissue (he has asthma and a dense history of respiratory infections) or a tumor (which could cause... lots of respiratory infections over the years). So we're both incredibly anxious right now, as he spends his time back and forth with traveling for work and trying to find time to go to the doctor, while I accompany him when I can, splitting the rest of my time between work and DIYing our wedding. Medical stuff is never fun. But the best thing that can be said for all 4 of us (me and him, you and John) is that we all have someone who loves us immensely and will always be there to hold our hands at the doctor and take care of us afterward.
I had an endrometrial biopsy. It was planned though as part of infertility testing.
ReplyDeleteI'm so sorry about what happened to you. That is awful.
But there are good doctors. Most of them would be angry that one of them did this to you.
Please take care of yourself! I don't like the idea that you're in so much pain.
Jen,
ReplyDeleteI'm a longtime reader of CW & have read EPBOT since you started it! I'm incredibly sorry for what you've gone through & are continuing to go through. I've been "fortunate" enough to be diagnosed with endometriosis & have gone through multiple Lupron injections just to get the "factory" shut down & the pain stopped. If that hadn't helped, I certainly would have continued down the road towards a hysterectomy.
What I hate most for you is that your experience with specialists hasn't been the same experience that I've had. My OBGYN is by far one of the sweetest, kindest men I have ever met (beyond my Husband, of course). He's been nothing but excellent in describing each & every option available & the pain to be expected from whatever procedure is done.
You will definitely be in my thoughts & prayers and I hope that your new specialist(s) are as great as mine have been. (and if you were willing to go to Atlanta, I'd give you names!!!)
In addition, I hope that John's recovery goes well.
Amanda C.
Jen,
ReplyDeleteI totally understand your situation. I too suffer from anxiety, most of which is related to hormone surges around my cycle. I could only imagine your fears and frustrations regarding the gyno dr. I suffer from endometriosis, and as I sit here typing, I am having that lovely pain that is pretty similar to what you describe. I had surgery 5 years ago to remove the endo and cysts, but I am fairly certain that they are back by now. I am dreading the thought of having another surgery. I just wanted to let you know that you are not alone, there are lots of us that follow your blogs and we care!
Oh, and xanax will help tremendously- so definitely take it before the appt. to take the edge off!
Hugs!
Nicole S.
Don't hate all doctors because you had some bad ones. I had terrible doctors growing up. I avoided going to see the doctor as long as I could. Then, I got married, moved to a different area and found a horrible doctor. Fortunately she referred me to a specialist in another town, and I found a whole network of wonderful doctors. Change doctors if you need to, but make sure you take care of yourself.
ReplyDeleteI am so sorry that that happened to you!! I have never had to experience an unnecessary procedure at the Gyn and certainly not one without the proper pain medication but I can definitely relate to the fear of going back for another appointment. I had an IUD put in about 6 months ago and after she supposedly placed it it "shot out" at her. (Her words). It was excruciating. I read all of the materials available prior to the procedure and never recall seeing expulsion during the procedure as a possible complication. I sat spread eagle for 30 min with the instruments still inside of me while they tried to find another one to put in. The first insertion was painful enough but now after the excruciating expulsion I had to go through it all over again. I really wish I hadn't told my bf I didn't need him to come with me. I'm so glad that John didn't listen to you and went anyway. It's always good to have someone there with you who knows and loves you! I know when I do get the courage to go again I won't be going alone. I'm sending all sorts of love and good wishes your way in hopes of a positive experience and speedy recovery!
ReplyDeleteYou are not alone. I share your fears/ aprenhensions. Im glad you have John. Good luck on your procedure. You'll be in my thoughts!
ReplyDeleteSending positive thoughts your way! I've been there, the biopsy was the worst pain ever, worse than natural childbirth!
ReplyDeleteI've had better luck with the NovaSure, almost three years later I have little to no bleeding. Unfortunately, I had my tubes tied at the same time & developed an incisional hernia which had to be repaired. The repair failed & recently had to be repaired again.
I also have endometriosis & regret not just going for the hysterectomy. The only thing that has kept me going back is that I have great doctors whom I trust.
I hope that you can find a great doc who can help you through this! Good luck! You''ve got lots of people rooting for you!
I am so sorry you had to go through this!! I wish you luck in your next procedure and hopefully you will get some answers-good luck to you-I will remember you in my prayers! How horrible!! I wish you the best, Your fellow Disney fan
ReplyDeleteHi Jen,
ReplyDeleteI've read a few of the other comments here, and obviously many people have bad stories about doctors. I guess what I would say is that you are so lucky to have John! And just keep in mind that doctors are fallible humans, just like all of us. When I make a mistake at my job (web site design and maintenance), no one's life hangs in the balance. Doctors have jobs that most of us wouldn't want the pressure of. And they are biased by their own experiences (both personal and professional), just as we are. We would like to think they are incapable of mistakes, but they're not. Should there be repercussions when it does happen? Yes, I believe so. But I believe that most truly are in their profession because they want to help people. Find an OB you love and stick with him/her. I would encourage you to try to not let past bad experiences keep you from getting the medical help you need now and in the future.
Best wishes,
Donia
This may be my first comment - I'm a big fan but felt fine feeling invisible... until now! :) I had an ablation a few years ago but never expected it to last. I dream of the day I can have EVERYTHING yanked out but they say I'm too young to have EVERYTHING out so I'm jus waiting until I'm OLD enough because I want... wait for it... EVERYTHING out.
ReplyDelete(Don't get me started on the hell I went through with hormones. My family barely survived with all the times I tried to chew their heads off! It was not pretty...)
I'm so sorry I have nothing to say to help make you feel less anxious. I'm avoiding the doctor for my own, other reasons, right now, so I get avoiding the doctor!
As the sister of a physician, I would say, based on conversations with her about going to the doctor with my own family: Just ignore anything the office staff says! Ultimately, a good doctor will not care. They have to be concerned about legal issues but if you say it's ok for him to be there, they should be ok with him being there.
I don't think I've ever commented here, but I read every post. When new ones come up in my Google reader, it makes my day. :)
ReplyDeleteI, too, have medical anxiety. I wrote a whole post about my horrible ob/gyn experience (my first exam ever!) when I was around 12 years old, then I realized maybe I was making this more about me than about you. Suffice it to say, that I'm right there with you...I know that pain, the feeling of violation, the sense of powerlessness, not to mention questioning in your mind how a dr can do that to someone while they're crying and begging for them to stop. I think my medical phobia has come from that day, that first exam. I didn't always used to be this way. But I am working through it. I have found a good ob/gyn (they're out there!), and I go every year now, by myself (for me, having the Hubs go with me makes me MORE anxious, in a weird twisted way...). It's not easy. I have to bring my "bag of goodies" as I call it. My sheet of cardstock with stickers on it to count while they take my blood pressure because the feeling of my pulse inside my eardrums freaks me out. My MP3 player so I can keep one earbud in the whole time, piping Gregorian monks chanting into my brain. My rainbow striped knee socks, because I can see them when my feet are in the stirrups. A magazine with lots of pictures for counting while in the waiting room. And, for getting shots: SpongeBob bandaids and usually something chocolatey for after. It sounds silly, but these things help me feel more in control. I also do meditation every day in my regular life because my medical anxiety spills over into the rest of my life quite often. The bottom line is, whatever you need to arm yourself with to get through this on your own terms, do it. If that means you have to demand (like I do) that the doctor explain everything to you ahead of time before you put your feet in the stirrups, do it. If it means you have to crack jokes (like I do) with the nurses about your bag of goodies to get it out in the open "HEY, I'm kindof freaking out here, have a heart," do it. If it means you take John with you to every single appointment, do it, no matter what any drs or nurses say. It's your body.
I'm so, so, so sorry to hear about your horrible experience with your ob/gyn and the ER. Reading your description of them just went right through into my heart. Drs are experts, sure, but not the way we usually think they are. Not in the way that means we don't need to question them, or tell them to put on the brakes, or ask for a second opinion. They just have studied more than we have about health. But our bodies are still our own, and in my opinion we have the last word about what happens to our bodies when, how, and by whom. I wish you strength and peace as you move forward to your dr appt. You're not alone, and for the first time (everyone else I've shared my medical stuff with has been baffled as to how I could possibly feel this way or have these anxiety experiences), I don't feel so alone either. Thank you for posting. Now you're pretty much my hero. :)
Jen, I wish I could hug you. I've been reading your blogs for so long I feel like a dear friend is in distress. I was crying and my husband kept asking what was wrong. I think the babbling about drs, hysterectomies, and biopsies confounded him enough that he gave up.
ReplyDeleteJohn offered great advice- focusing on the after sounds like a good plan.
Hugs!
(((((((((((((((((hugs))))))))))))))))
ReplyDeleteI've always had to diagnose myself, even when I had good doctors. Nobody seems to be able to connect the dots, as it were. :(
I feel your perfectly rational anxiety about facing repeat procedures. I also understand having mystery symptoms nobody can explain.
Two weeks ago, I had a sudden attack of vertigo. Never had it before, no obvious triggers. I've been struggling with it ever since. They said it was probably labyrinthitis (which unfortunately, is NOT having David Bowie on the brain!! :P). (It's actually a viral infection in the little tubes in your ears that govern your balance)
I was given lots(!) of valium to combat the dizziness, but NOBODY would give me anything for the nausea. I had to go to WalMart to get Gatorade since that was all I could hold down. I had to hang onto the cart for dear life & keep telling myself "You can do this. You can make it." Stopped for a lot of rest breaks & slow breathing. Pissed off the other shoppers, but hey, at least I didn't throw up on them. :P
Thank goodness you have John there to be your pillar of support!! :) You can always have him wear a Goblin King glitter shock wig for when you wake up in post-op. LOL.
Oh wow! I hate going to doctors and am always nervous when I have to find a new one. I haven't had the horrible problems that you've had, but I think you're super brave and you are so very lucky to have a wonderful husband who insists on going in with you! If you lived in Idaho I would recommend my doctor, I still don't like going to see him, but he is the nicest doctor I've met, he's also the first doctor I've met with that has told me things I actually wanted to hear (like that paps don't have to happen every year in some cases!).
ReplyDeleteWishing you the best of luck just like everyone on here. You're a very brave person (especially to share with the whole Internet)!
After almost passing out once from pain and once from the heaviness of my flow, I went in to beg for a hysterectomy. It was the smartest thing I've ever done for my health.
ReplyDeleteOne thing I learned was that if you aren't interested in having a baby, don't see an OB. Go to a doctor that only practices as a GYN. They are so much better when you have problems.
My problem was endometriosis. Although having stuff taken out didn't solve 100% of my troubles, it took out a good 90%. It is amazing how much easier you can handle PMS when you aren't bleeding to the point of anemia.
Regarding your unexpected biopsy: You might want read this blogpost about a mom and her daughter and the shot the daughter didn't want. The feeling of violation is not something to be treated lightly. Kicking the doctor IS an option, should you ever be in that situation again.
ReplyDeletehttp://blog.pigtailpals.com/2011/11/everything-was-fine-until-it-wasnt-what-happend-at-the-doctor/
As a guy I obviously can't relate to a lot of the things that you are going through. But I do know what it can be like with doctors tho. I have colitis, which can effect me every single day of my life... and at times the doctors can be fairly clueless.
ReplyDelete[icky details follow, read at own risk]
I had to go through a colonoscopy, the procedure itself wasn't so bad (altho feeling a big tube press against your stomach from the inside feels so wrong), it was the prep that was the nightmare. I had to laxatives the day before... litres of the stuff (I think it was about 6 litres). It was hellish. It got to the point that my mother had to stay with me in the bathroom and pour the stuff down my throat while I was still on the loo with the effects. And don't think this was when I was a kid having my mother help me take my medicine... I was 23 at the time!
I dread that the doctors may ask me to have another test (this condition is for life). I now live 300miles away from my family in a house by myself. I know that I wouldn't be able to do it by myself.
So I know how you feel about needing john about for medical stuff... and John, you don't know how much it is appreciated!
I delayed having a hysterectomy, for years, despite crippling TWICE-MONTHLY pain. When I finally did it, I was SO FREAKING GLAD!!!! It was the best health decision I ever made!! Of course, I *love* my OB-GYN, so I don't have all that to work through, but still, ask around, find a good one and GET THE HYSTERECTOMY! I, like another poster, love to walk down the "feminine products" aisle and just gloat! :-)
ReplyDeleteGOOD LUCK!!
First I want to say how sad it made me to read of your experience. I'm so so sorry you went through all of that (and John too). I'm glad these women have been able to give you hope and encouragement with their experiences.
ReplyDeleteI'm hoping it's ok to say there *are* good doctors out there - I don't say that to flaunt it in your face or diminish what you've been through but to give you hope that there is good care to be found in the kindness of a gentle doctor who communicates with you during the whole procedure (whatever it may be), who listens and hears you. My prayer for you is a practitioner who will give peace of mind and wellness of body in whatever is to come.
When I was 15, I was having horrible periods that left me woozy from blood loss, and passing clots the size of my fist (gross, I know... The first time it happened, I literally thought I was dying). Not to mention the pain that would routinely keep me home from school. When I went to the ob-gyn, she tried to do a pap, which felt like she was tearing my vagina apart. She ignored my screaming, and afterwards told me that I 'just needed to stretch', and then shoved her fingers inside meand spent a good thirty seconds moving them around. No warning, no explanation. It was my first exam, so I didn't know if it was normal, and to this day relieving the experience brings me to tears.
ReplyDeleteA year later, I mustered the courage to go to another doctor, since I was still having all my problems, and she told me after examining me only by sight and with a cotton swab that I had a longitudinal vaginal septum (a birth defect where the vagina is divided down the middle into two canals), and that the first doctor had likely torn the tissue when she used the speculum, explaining the extreme pain. Bless that second doctor for being a wonderfully patient and gentle woman, or else I likely would have never been diagnosed, nor gone to an ob-gyn ever again. I ended up having to have surgery to correct the defect (which scarred badly and likely has left me unable to conceive naturally...)
To this day I wonder if the initial damage from the exam increased the risk, and I've only managed to tolerate one exam since. I've never felt so violated and alone, and my mother thought I was exaggerating my experiences and refused to file a complaint against the doctor.
Sorry, all that baggage probably doesn't help at all, but it feels good to let it go a little bit. My husband comes with me to most of my appointments and he is such a wonderful advocate for me; the fact that he's a paramedic and actually knows what the doctors are talking about is an added bonus!
Stay strong, and know that we're all gonna be be rooting for you right here!
Jen, firstly, I'm so sorry, I completely empathize. Please let me assure you, you are not alone.
ReplyDeleteI almost couldn't believe my eyes when I read your words about the endometrial biopsy. I had that same procedure *YESTERDAY* and was gobsmacked by the intensity of the pain. I've had some serious "my-uterus-is-trying-to-kill-me" moments too, over the last 4 years including major surgeries and a week long hospital stay, all girl-junk related. So yeah, I'm no sissy. But the amount of pain I experienced yesterday afternoon nearly made me jump right the hell off of the table. And I *knew* it was happening, to have that sprung on you, and to have her NOT STOP when you were begging her to, and in a huge amount of pain?!? Totally unacceptable! I can't imagine... You poor, poor thing, my heart sincerely goes out to you. My doctor actually offered to stop, but I just clenched my jaw and told her to finish. They know that stuff hurts, especially, as my OBGYN told me, in a woman who hasn't given birth (like you and I). Whether or not it was illegal is besides the point, it was unethical & damaging.
I'm also trying to move in the direction of hysterectomy. The thought of continuing this misery each month for another 10-15 years seems like nothing short of grim torture to me. I just want to put all of this behind me, and move on with a pain-free life.
I'll keep you in my thoughts and hope that you'll find a doctor that you can develop a relationship with, who you can trust to be your advocate. I promise they're not all like that awful woman. Stay strong, ladypants!
Hold John's hand tight and keep your chin up, love. It's ok to be scared, and it's ok to talk about this stuff. It really does seem to make it less scary to know you're not alone. I hope that you'll post about this again, for you, and for me. I like knowing I'm not alone too.
oxo,
Lisa
A lot of what you have been through is like I'm reading about myself. Cysts, fibroids, endo since my teens. I had the ablation done in 2006 and that lasted about a year. I am 42 now and I had a hysterectomy in 2008 ... it was the BEST thing I have ever done. I didn't know what it was to be "normal" until then. I had everything removed except a little sliver of one ovary and have not had to do any hormone treatments.
ReplyDeleteI thank my Dr. for my experience. He is kind and caring and very talkative, explaining everything good or bad. Caring to the extent that even though I should have had everything removed in '06, he knew that my mother was in the final stages of cancer and he did the ablation to hold me over so that I could be with her without being down with major surgery.
Because of the hysterectomy, I am a new woman, the woman I was always meant to be. :-) For the first time in my life, I live without fear ... fear of the pain and agony I always knew was around the corner, fear of how long it would last this time.
I know you are in the Orlando area, I am up in Tallahassee. Although it is about 5 hours away, if you want to see this Dr., I will happily give you his info. No, I don't work for him. LOL! I just FULLY understand the miracle and blessing of finding a wonderful GYN.
You will be in my thoughts and prayers as you go down this road.
~Melanie Wink
I am so sorry for your experience. I understand your feeling of being violated, when I was pregnant and over due instead of my regular checkup my doctor took it upon himself to scrap my membrane without telling me after immense pain I realized what he had done. He never thought it was a problem. I was/am very angry. I am trying to not to be the demure, good little girl I was taught to be and to take more control but thatgoes against years of. Southern training. Fortunately my NY husband is looking after me too. Will be praying for your procedure and for your strength of will.
ReplyDeleteYou need better (or worse) insurance. Not one of my doctors does anything without seeing me twice just to tell me what needs to be done, and a third to look at me again, and then a fourth right before whatever they do. They want to get every red cent my ins. will pay out. And boy do I understand about the frustration of them not knowing what's wrong with you! I can't walk more than 10 steps before my leg loses feeling and after 3 MRIs, a few x-rays, and a visit to a neurosurgeon, no one knows why, and almost every Dr. in the area thinks I'm faking.
ReplyDeleteWell to start let me say right off for over 27 years of my life I have been a chronic patient. I have Crohn's Disease and sadly have spent more of the time being sick then healthy. The hardest part is finding doctors that will work WITH me and not against me.
ReplyDeleteI also bring my husband to most of my appointments (he works out of house now so it is harder to bring him along but I've been with my current doctors for over 10 years now so am less likely to run into trouble).
I learned real early on (I began living on my own at 16 just one year after I got sick) that I am my best advocate. I question everything my doctors are doing and if I do not like it I say no.
Sadly I have many horror stories that I will not bother to list, but I will say this, that OB-GYN was wrong. No matter WHAT she THOUGHT you were there for she should have confirmed it before she did the test. I think that is one thing I love most about living in Canada and in a big city. Here the doctors ask about everything before, during and after to make sure we are all on the same page.
My advice would be to share these horrible experiences with your new doctors. Explain you need a very clear idea of what the course of treatment and tests will involve. If they know what you need to feel at ease it will be much easier for them to give that too you. I would rather explain my story a 100 times over to each new care giver then to forget to tell just one and have another experience like those in my past.
Fear is healthy, it keeps you vigilant, but never let it rule you to the point of putting your health at risk. Best of luck and remember you are not alone.
I hope you found a good doctor this time, because there really are some out there. We've been very fortunate here in our midwest town - just about every doctor associated with our clinic of choice has been wonderful and caring. Keep looking until you find one, too.
ReplyDeleteI've not had female problems, but I've had medical issues. Last year, after I had my gallbladder out, I've only gotten worse. I've been to the ER so many times, the nurses recognize me and my husband. Doctor after doctor had no idea what to do with me or for me. At one point, I was told my pain was all in my head and they wanted me to take some psych drugs for a while to prove it. Pain can make you desperate, so I agreed.
ReplyDeleteAfter going back and forth to more doctors than I can remember, I finally was able to see a specialist at Duke University, but I had to literally beg to be seen. They told me that I have Sphincter of Oddi Dysfunction. After doing several tests, they went in and did something called an ERCP. After that procedure, they told me I have Type II SOD, which essentially means that there's not much they can do for me.
Since the ERCP in April, I am in even more pain than before. It's not even a nice pain that can be ignored. I have this burning, ripping, searing pain in my side 24/7. Short of being knocked out on large doses of serious pain killers, I can't escape it. I can no longer sleep through the night due to the pain. I know what it feels like to be balled up in the fetal position begging and pleading for something, someone, somewhere -- just anything that would make it stop.
I am able to make it every day because God is with me. He collects my tears and carries me through the struggles. Speaking with others is a big help. I have a friend that had to move to Minnesota to be near the Mayo clinic. She's now had four brain surgeries and may have to have a fifth. She's the only person in the entire world who has her disease. They literally are making things up just to help her.
I urge you to continue to reach out to the people around you. Continue to cry out to God. Together, we can support each other, pray for each other, cry with each other, and be there for each other.
You've been given an awesome husband. I know he hates to see you in that much pain. I've seen the look in my husband's eyes when I'm laying there begging for mercy and he can't do anything but hold my hand. I'm so glad that he's there for you!!
All of this rambling is to say that you're not alone in your suffering. I'm here if you need someone. Please don't hesitate to contact me.
PS - Your blogs are one of the few bright spots of my day.
I'm sorry you had such a bad experience with your doctor. I also had a bad experience with the first biopsy that was attempted - the doctor couldn't get past my cervix - so I was really afraid of the pain the second time I had to have it done, but it only lasted a few seconds and it wasn't half as bad as the first time. It was good that I had the biopsy done because I was developing cancer. I had a hysterectomy last December and I was nervous about it, but I had a doctor I trusted and I don't even remember being wheeled into the surgery room. Recovery isn't a picnic, but everyone gets through it. There is a great website, www.hystersisters.com, that offers a LOT of support and has a lot of helpful information and forums. You also can't get any better than a loving husband who will be at your side every moment to support you through it.
ReplyDeleteAAAAAAAUGH that's the worst thing I've ever heard! Stupid, stupid doctor! Man, that makes me mad!
ReplyDeleteMy husband is also VERY uncomfortable with anything involving needles or scalpels or people in white, and I have to say - based on his fear, you are SO BRAVE to consider what sounds like a major procedure, and I applaud you for it.
Eek!
ReplyDeleteI'm due for a cervical smear. I'm iffy about it anyway (it makes me feel very vulnerable and uncomfortable even though I know, logically, that doctors and nurses have seen all types of body bits and cooches).
I'd never known about the biopsy thing before. I do have period/uterus/ovary issues, and now I'm terrified.
It's great that you have John there with you though, support is so important in these situations.
Here's what I think is really important: you filed a report. You and John were victims. You were in shock at the time and his need was to get you away safely. Don't even grimace to yourself when it crosses your mind- you didn't just "take it." There's something on the record and more people need to do that to stop the bad ones. Good job, lady! I'm proud of you both.
ReplyDelete-Barbara Anne
That's simply appalling Jen. Just having things placed into the uterus is bad enough (hello IVF!) But being ripped at, without warning or painkillers, is unimaginable. No wonder you have anxiety.
ReplyDeleteYou aren't alone in having your husband with you for all appointments either. DH has gone to every infertility appointment with me, even if it's just a blood draw and we even managed to talk the anesthesiologists into letting him stay from start to finish of my c-section...they usually kick partners out for the spinal block/epidural portion of the event. It's so important to have a clear headed advocate with you when dealing with frightening medical issues.
Wish you were in Tampa. My RE and ObGyn are both fabulous...big hugs and lots of prayers.
I'm so sorry you went through an experience like that, its not right (which I know you know) and complete BS but I'm glad that John is there for you this time (and to heck with whatever the doctor's office thinks about it, they have no idea) I'm SURE that this time will be better and that you will feel much better after (good grief, it couldn't be worse) I hope everything improves & your uterus quits trying to kill you (what the heck is that about, bad uterus!)
ReplyDeleteJen ~ I rarely comment but felt compelled to respond to this post. At age 17 I got very sick very fast. I was in tremendous pain and an nearly blurring memory of many doctors and many tests is all I have of those first 2 years. The doctors gave up on me and suggested it must be in my head. I had always trusted doctors but after that experience I developed panic attacks just from the thought of going to another doctor. At age 23 I was nearly crippled and couldn't walk through Target without breaking down in tears from the pain. I gave one more doctor a chance and he diagnosed me on my first visit - Fibromyalgia. Even though he was a godsend, I still had my fear of doctors. My wonderful husband (when he was just my boyfriend) has always known that and so brought me to his doctor and sat by my holding my hand and soothing me. It turned out this doctor was different - he listened, he asked, he generally did what a good doctor should. I can now go to him without much anxiety and I know I can trust him with my help. But my husband still insists on going with me and being by my side and it means the world to me.
ReplyDeleteI hope that this doctor is as much a godsend to you as mine was to me.
Going to the doctor terrifies me too. I've had some rotten experiences and right now I'm putting off a blood test. Yes. A blood test. I also hate the dentist. The office has a certain smell that turns my stomach the moment I walk through the door. I've found it helps to let whoever is doing the procedure know that they scare the snot out of me. They work extra hard to make me comfortable. You can do this! :)
ReplyDeleteI'm so sorry you went through that. I'm almost in tears because you had such a horrible horrible doctor. I've gone through some pretty horrible stuff and my ob/gyn was right there with me through everything. He's an amazing person and my husband thinks the world of him because my doctor saved me when my husband couldn't. I hope and pray that you find a doctor that restores your trust in those who take care of the mysterious lady parts.
ReplyDeleteOh, Jen! That's so terrible. I've had problems with fibroids...or rather, one giant one that caused all sorts of issues. I had a myomectomy (basically a c-section) to remove it, and compared to everything else, the recovery, while painful, was easy because of the sense of relief over actually taking control and doing something about this thing that was plaguing me.
ReplyDeleteThe best thing I did to help manage everything was go for acupuncture. I can't reccomended enough for pretty much anything that ails you, but particularly 'lady issues'. :) There are lots of North American women our age who are acupuncture specialists trained in reproductive organ issues, and the two I've seen have been amazing. There are also some Chinese herbs that are foul, but make a huge difference for that kind of pain in a way that chemical drugs don't. And having a first-class husband is a huge help too!
You'll be in my prayers! I hope you can get some relief!
I feel for you, I really do. I wanted to make a comment that was potentially helpful. I know you are in Orlando (I think), so I found this place:
ReplyDeletehttp://www.patientadvocatesfl.com/PatientAdvocates_of_FL/Welcome.html
Perhaps contacting them would help you know that someone is available to support you, someone who knows the medical arena.
In the meantime, I send happy good vibes to you and John. Medical stuff is anxiety-inducing.
http://www.somethingpositive.net/sp06122012.shtml I think you need this comic.
ReplyDeleteI am sooo sorry about what happened to you. After years of horrendous pain, a bazillion trips to the er and too many mris/ultrasounds/ct scans to count I found out I had stage 4 endo. At 31 I finally got a total hysterectomy, my ovaries removed, and a chunk of my intestines cut out. BEST THING I EVER DID!!! The pain is gone, and at this point, I don't have to go to the ob/gyn, thank goodness!
ReplyDeleteI hope you can find a good doc that will listen to you and do their friggin' job!
Jen - I had the same types of issues in my late 20's. I had the biopsy you are referring to and, 22 years later, I still say it was the most painful thing I've ever experienced. (I don't have children).
ReplyDeleteI had ignored going to an OB/GYN for about eight years and only went because my symptoms got so severe. My diagnosis was uterine cancer. I got out of the hospital the day before my 29th birthday.
I'm not at all saying this to scare you. I want you to know that you are not alone in your fear. But do yourself a big favor and find an OB/GYN that you can trust completely. That's what made my experience so different. My doctor was forthright and prepared me for the procedure. If you don't feel comfortable with this new doctor, find another one until you do feel comfortable.
You will be in my thoughts. I know John will protect you completely.
As a medical doctor who tries to be loving and caring and gentle, and reads your blogs as a source of inspiration and laughs daily, and has even recommended your blogs to patients, this post made me cry twice. Once when I read the post -- I love you and am sorry for your bad experience -- then again when I read in the comments that I am obviously evil, disgusting, and I suck as a human being to lots and lots of people who have never even met me. Excuse me while I go cry some more.
ReplyDeleteHi. I read the whole thing. I want you to know that you are not alone. I was in the doctor's office this morning for my regular appointment. My blood pressure was through the roof the entire time. It's not normally like that. I am really, really terrified of the doctor.
ReplyDeleteMy icky story follows. If you don't read it, I understand.
In 2006 I went in for a normal appointment, too. I had abnormal results that further testing revealed were pre-cancerous cells. The procedure to take care of them is called a LEAP. Essentially, the take an electrically charged wire and scrape the cells off cauterizing the wound they're creating at the same time. It's as gross as it sounds. The merciful part is that they numb the entire area. Or they are supposed to. They missed a spot. When the searing hot wire hit, I screamed and nearly came off the table. If my own husband hadn't been there, holding my hand, I don't know what I would have done. Then they used an "organic" bandage of some sort. I had a nasty reaction to that, too. It was a horrible experience. I would not wish it on anyone. But, I went back in six months later when I was supposed to. I get the shakes and I can't sleep the night before these appointments. It's awful, but I am healthy today. I know it's not the same thing you went through, but I want you to know that you're not alone in your fear. I am scared, too. I won't be there physically when you face that doctor, but I will be there in spirit. Ew. That sounded icky. Just know know you have my support, too.
Oh Jen... while I've never had the lady issues like what you've had, I had the *worst* pregnancy, and my OBGYN was evil as well. It's a common thing for us of the motherly persuasion when we get together to talk about our birth experiences. Usually women go right to "how long was your labor?"... which I can usually blow any 3 day horror story out of the water with my 8 1/2 weeks. Yes, WEEKS. Of labor. Even the other doctors in the practice were telling me that my doctor was being unusually cruel to let me go on so long, and that if they were my doctor they'd deliver me whenever I wanted them to.
ReplyDeleteDuring my c-section, she talked about her daughter being in a car accident, not what you want to hear when someone has their hands wrist deep in your abdomen (because you have to be awake for a c/s, although numbed from the boobs down). Thankfully my son pooped on her in his first seconds of being earth-bound, which I see as a mini revenge.
The lesson I've learned is that there are some doctors who downright suck, but there are always better ones out there who are willing to be a patient advocate as they ought to. You don't deserve to be treated like crap just because someone has a piece of paper on their wall that says M.D.
Here's wishing your procedure goes well and that you come back funnier than ever. Because you're an awesome funny lady, missy. And you rock. And John rocks too.
Yeah. Medical profession + messed up insurance is the worst. I’ve been through so many bad situations between my daughter and me. Each of us has been though something similar (thankfully, she hasn’t been though something nearly as bad as yours or mine). The only thing I’ve taken away from it is that doctors are human and like mechanics, software engineers, artists, and all other professions – some are better than others and some are just plain incompetent jerks. Now, I completely trust my gut. I don’t let them do anything without asking as many questions and I want to ask and doing research on my own. I get references, lots. If I see a doctor and I’m not comfortable or happy, I leave. In most cases, I have been able to get a refund for services. I will ask for a second, third, fourth or fifth opinion. Not get the answer I want, but to find the human can I believe in. You know, one that sits down with me, asks questions, and doesn’t dismiss anything. Your health is crazy important, there is a doctor out there that you can see and be comfortable with. It sucks that you have to work really hard to find them, but so worth it. We have great doctors now – and trust them. Its so much different.
ReplyDeleteOh my word I feel you. My son's birth was a medical crazy fest - with raising blood pressure, broken beds, a cancer scare and a whole host of things I don't wish to relive ever.
ReplyDeleteBut here is the thing - getting through your next appointment is your way of taking your power back. The experience is traumatic but you are strong enough to handle it (with love and support from John of course, we don't need to be superheros after all)
Just remember that you can get through it and when you do it might make the next appointment a little more bearable.
Until then best of luck, take the Xanax and know it will be better in the long run.
Ugh this post is quite apt as yesterday I got a letter from my Dr reminding me I have to come in for another pap :(
ReplyDeleteThe last one I had was a nightmare!
--- Warning for the squeamish! ---
It was a clinic I've been to before, but a new Dr.... so I go in for my pap, she asks some questions takes my blood pressure which is quite high - so she comments on that.. I ask if it could be stress/nerves, since I was quite anxious. She asks why - so I explain that I'm very shy and don't like the idea of people seeing me without clothes on. So she does the kind "it'll be alright" thing.
So then she asks me to take ALL MY CLOTHES OFF, and lie on the exam table.... That clinic likes to do a breast exam, and press around your belly checking for lumps or whatnot as well, but the other Dr there gives you a sheet to cover yourself with and leaves the room while you undress and get organised on the table. She stayed there in the room! (albeit with her back turned, concentrating on preparing her tools)...
I was horrified, but stupidly too horrified to go "hang on a second, I just told you I'm having a minor panic attack at the thought of having you peer into my lady bits, I'm not exactly comfortable with the idea of laying stark naked, spread eagle, on the table for you"... (ahh, hindsight!)
So I dutifully laid down and then she goes "ohh, would you like a sheet to cover you?"(duh!)
So with some modesty recovered, she does the pap test, It hurt a little and she asks is it feels uncomfortable, and I tell her it's ok.. then she makes some comment about there being a lot of blood... asks when my period ended.... which was a bit over week before, so it couldn't have been that.
So she feels around a bit, then takes the instrument out and there was blood all over them, and she seemed to pull it out with flourish, so a few blood drops flicked onto my thighs and onto the wall. I nearly died of embarrassment...
So she's slightly freaking out (in that professional way where she's looking somewhat calm but you can tell she's not) - which freaks me out... asking if I've ever bled from a pap test before - no, never! So she asks me if I have a pad with me... no I don't :( (I've never needed one after a pap test)... so she has to go get one out of her handbag for me.... Good Lord, could it get any worse?
So I get down off the table, clutching the sheet to my body and the pad in my hand, I then notice that the disposable pad thing you're supposed to put your bum on... had obviously not been under my bum & there was a small pool of blood on the table.
mortifying!
So she cleans up as I'm getting dressed and then calls (on the phone) the other Dr in the clinic, asking her advice on what has just happened.
Then she realises that she hadn't checked my breasts, (dagnabbit!) so I had to take my top off and let her check those. She thought she found 2 lumps, one in each breast!
A few days later I get a call from the clinic to come in for an appointment. Normally you're lucky to get a Fri appointment if you call first thing Mon, but they called at about 5pm one day and gave me a 9am the next day, so I've panicked, thinking it's something very urgent...
I get there, and they say that the pap results were inconclusive (too much blood in the sample), so I have to wait 3 months for them to do it again. And she's all relaxed this time, saying it's quite normal for women to bleed from a pap test.
That 3 months is now up, and I need to go back :(
My ultrasound showed no lumps in my breasts thankfully.... so I'm thinking she's just an inexperienced Dr and she was too rough and made me bleed?.... but there was so much blood!
At least next time I wouldn't need to (and would refuse to) completely disrobe. And I'll specifically make my appointment with the other, more experienced lady Dr there!
Oh, Jen. Let me preface this, I am batsh*t crazy thanks to anxiety and depression and medical issues/environments are one of my hot buttons. That said, the total hysterectomy I had 8 years ago was one of the best things I ever gritted my way through. Even tho I had to ask my mom to come with me and the surgeon was a not-so-pleasant individual, and I've developed a hernia at the top of my old (midline) incision. The recovery was the worst part, very slow. My mom has never been one to back down, but she says watching me has taught her that it really is ok to be a b*tch about this stuff. I started handling things that way because it is literally the only way I can get anything accomplished. I have to just bull through, quickly and exactly in the way I am prepared for. Any deviation or hesitation ruins my momentum and I have to start over. Something we forget a lot is that the medical field is a service industry. Ask questions. Demand answers. Make them spell it out (and use small words). Heck, get it in writing if at all possible. I know it's hard to do, and that's where your wingman comes in (and yours sounds like a dandy). Lately, I've just started off by explaining my limitations and letting the docs know up front that I need to know exactly what's going on before I can allow anything to happen. It's gone pretty alright so far, but I still think hospitals are places that steal your clothes, hurt you and you pay them for it. I sincerely hope things work out for y'all.
ReplyDeleteJen, bless you and bless John. I had a female doctor treat me like a clueless little girl and refuse to do the hysterectomy I requested because she thought I "could still meet Mr. Right and want to have his babies" despite my age (42) and my medical history (MS). I walked out of that appointment, called another OB/Gyn and got my hysterectomy.
ReplyDeleteIt sucks that the ablation didn't help you, and I hope your new doctor is a human and humane being. Sending a ton of good thoughts.
Shame on that doctor for doing that to you! Some people just don't think about how their actions can affect other people. Going to the lady doctor sucks-You can't see what they are doing, you are vulnerable with your naked legs and your feet in those stupid stirrups, and someone's face is in your no-no place (which is okay I guess if you are married, and into that kind of thing). Add to that any factors like social anxiety or bad doctors, and it's a really bad combo for a bad memory.
ReplyDeleteSo glad that you have John to help you through it.
Because I don't have insurance, I haven't been to the lady doctor or the dentist in nearly a decade. I'll be so out of practice and nervous if I ever have a job that offers me insurance, I'll probably need a pill of some kind too.
Thanks for sharing, and best of luck to you and whatever solution you end up with.
My first real experience with an OB-GYN was when I was 19. I'd just started having sex & wanted to get on the Pill, plus ask questions I knew my motger couldn't handle. My OB was awesome: kind, friendly, open, honest, helpful. All in all, a great man. My second experience with an OB was not so happy-happy. I had moved and needed a new doctor. He came highly recommended and his office was so fancy, I was immediately cowed and submissive. He was horrid: cruel, abrupt, condescending, and rough. During my exam, it felt like he was excavating for gold. He scared me so much, I didn't go back to an OB until I was pregnant. That would have been 9 years between exams. Luckily, my doctor during my pregnancy listened to me sob as I told him my gyno fears and treated me like a princess with kindness and humor. Seriously, INTERVIEW YOUR DOCTOR CHOICES AND TELL THEM YOUR FEARS. The good ones--the really good ones--want to listen, they want to help, they want to assauge your fears. Do it for yourself, Jen. No one should neglect their health becsuse of terror. Loves & hugs.
ReplyDeleteDear Jen! You are always so sweet and you and John bring so much joy into people's lives; for years I have been an avid reader of cakewrecks and epbot, laughing along with the hilarious posts, crying like a sap along with the sad/funny/cat-related? posts and enjoying all of the creative and fun things your sites offer!
ReplyDeleteI WILL pray for you and John; even though we've never met, you both mean so much to me and as an aspiring medical student I can say NO, you are NOT a dufus, you are allowed to express your emotions! Some doctors are bad, some are good, but if you aren't comfortable with them, NEVER take the chance of following their advice. Your (WELL FOUNDED! HELLO ;D) fear of medical services is what concerns me, most, though. It's inspiring to hear you've overcome (or are starting to overcome!) your fear instead of ignoring the pain; meet with your docs beforehand to talk, buy chocolates for yourself when you get back home, and know that this, too, shall pass.
PS I can't believe there are jerky doctors like that in ORLANDO HOLY DONUT WHAT IS THE WORLD COMING TO!? I better scram Florida, fast?! Or maybe FL needs good docs? MY MIND.
xoxoxo
First of all Jen, I can't say enough how much I admire the relationship you and John have. It is just the most perfect demonstration of what marriage- real marriage- is all about. I love when you post stories about him or stories about both of you because they just make me smile and give me warm fuzzies. :)
ReplyDeleteYour fear and hesitation is completely warranted. I imagine I'd feel the same way had I been violated as you were. I think John's right though- the end result is worth it. My advice is get some really good recommendations for a doctor either by another physician whom you trust or from close friends. Then be honest with the new doctor about your past experiences and current fears. If they're worth half their salt, they will alleviate those fears. If they don't... next!
I wish you the best, Jen, and I'll be praying for you!!
Jen, I will definitely be thinking of you! I recently have been diagnosed with anxiety and post-traumatic stress disorder, which was hard enough. I have been avoiding my OB/GYN too and will have to go face her on Monday. I'm going to be having some important blood tests and who knows what else. As someone else who hates going to doctors due to my own traumatic experiences, I feel your pain. But we will get through it! If I can go on Monday, then you can get through Friday! Plus you have John there, so at least you won't be alone! :)
ReplyDeleteOMG, Jen, I just want to scoop you up into you a big hug!! That brought me to tears! How bloody AWFUL for you! (And for John, too!!)
ReplyDeleteI have PCOS (polycystic ovarian syndrome, where my eggs don't release from my ovaries and instead stay stuck there, forming cysts). My uterus wanted to kill me, too. Bleeding to the point of anemia, clots, cramps, migraines, nausea. It was awful.
We tried hormone therapy with first the Pill. When that didn't work, we tried another pill that made me want to kill EVERYONE. I walked around in a constant rage. It was like in the cartoons where the character sees red. I was like that all the time.
Then we tried a Mirena. I had been bleeding heavily for 6 months with no stop. I bled out that Mirena in less than 2 days. My doc was shocked and we tried another one, which lasted less than 24 hours.
My doc sent me to the surgeon because he said there were only 2 options left: NovaSure or a hysterectomy. I was scared of the major surgery, so I opted for the NovaSure. I got a laparoscopic tubal ligation at the same time because the surgeon explained that there was no guarantee that they could get all the endometrium. If there was ANY, it could grow back and give something an egg could attach to to be fertilized, BUT that I wouldn't be able to carry the baby because my uterus would be lined with scar tissue. So I would either miscarry or it could be ectopic. I never wanted children, so before he even said the words 'tubal ligation' I said yes.
The procedure was completely fine for me. I'm very happy to say that was March 2008 and I've been fine since. I have had exactly 3 periods since then, starting back at the beginning of August of last year, but they were so light that I didn't even have to wear so much as a pantyliner. There was just a little bit of blood when I wiped after going pee.
Fortunately, my doctors are pretty amazing. I've been going to the same office (though not the same doc the whole time) for over 12 years now. My doctor is actually on all sorts of medical boards and is the president of the Florida Obstetric and Gynecologic Society, Andrew Kaunitz. You can Google him and see educational videos he's made. The entire staff is just wonderful. I'm only a couple of hours north in Jacksonville, if you felt like making the drive! Feel free to email me with any and all questions.
Again, *BIG HUGE HUGS* to you and John. I hope you find some relief!!! <3
To the anony doctor from 8:58 - I'm sorry. Truly. Please know that all of us here are only venting because of personal experience, and that if we knew you, we'd no doubt have a very different opinion on doctors in general. Thank you for being one of the good ones. We need more of you!
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteNow that I'm post-op (3/23/04),
ReplyDelete(To the tune of "I want a Hippopotamus for Christmas"-apologies to John Rox)
I want a hysterectomy for Christmas
Only a hysterectomy will do.
Don't wanna use a pad, or stupid old tampons.
I want to live, with nothing but my pants on!
I want a hysterectomy for Christmas
I don't think Santa Claus will mind, do you?
He doesn't have to even take a stitch or two
Just send me a nice doctor
That's the easy thing to do.
I can see me now, on Christmas morning
Driving to OR.
Oh what joy, what surprise
When I open up my eyes
To know my insides are no more.
I want a hysterectomy for Christmas
Only a hysterectomy will do.
Not ablation, not Mircette by the cases.
I only love laparascomususes (sic)
And laparascomususes (sic) love me too.
(c) 2002 Sheila M Krueger
Oh Jen- you are so not alone! Thanks for writing this post (even though it brought to mind my own painful memories). I was so lucky to have 3 decades of good medical care but the birth of my daughter was pretty traumatic (lost a lot of blood and needed lots of stitches) and because of the meds they gave me to control the bleeding I didn't hold my new daughter for 2 hours after she was born. My sweet husband had to fend of the gran parents saying that no one would hold her until I had! (yes- he's a keeper). He also stayed by my side during my appendicitis when the ER and surgeon both wanted to send me home and only did exploratory surgery when they couldn't pinpoint my problem. They almost didn't take my appendix out and only did so "because we were there anyway"!!! Turns out I and my own doctor were right and it really was appendicitis. Had they sent me home it could have burst that night and put me in much more serious danger.
ReplyDeleteALSO- after the birth of my daughter not everything healed up well down in the lady-parts area and when my OB said I'd need an outpatient procedure done to burn off the skin tags she said she could do it but my insurance had just changed and I couldn't see her for procedures. So I went to a gynecologist and she used liquid nitrogen on my nether regions with only a spray-numbing agent!! I was so in pain and she only offered me an ibuprofen. I cried the whole drive home and fell into my husband's arms sobbing about the pain. Even worse- I had to go back 2 weeks later for a follow up and more freezing treatment! The only thing that made it worth it in the end was that *ahem* intimate moments are not painful now.
Tl;dr painful medical procedures suck, keep your wonderful hubby nearby and the resolution of pain is worth it!
I haven't read the comments, so maybe this has already been discussed, but I did want to give you my advice, as much as it's worth.
ReplyDeleteI have had two major hip surgeries - about 10-12 days total in the hospital, I think (I was really woozy from the pain meds). I dealt with an anesthesiologist who numbed the wrong leg, a nurse who told me to just deal with the pain ("Well I could handle it, so should you" was the line she gave me), being forgotten in an exam room without a call button for several hours, and of course all the 'normal' indignities of being in a hospital.
- Learn the phrase, "That is unacceptable." If you feel you're getting the wrong care, it's all right to pester until you are getting the right care. Be reasonable, but stick up for yourself - or have someone else do it for you.
- Asking for help does not make you a problem patient. This is the one time in your life where YOU come first. Obviously don't be mean, but really - you? Mean? Ha!
- Keep someone knowledgeable with you at all times - with all the drugs/stress, you won't be up for advocating for yourself.
- The nights can be the worst time. Talk about having John stay overnight with you (if that's possible for his schedule)
- Demand a suppository. It's really, really difficult to go to the bathroom after surgery, and many of the drugs you're on can increase constipation. Save yourself the....trouble :D
And if you're interested, here's my hospital story, about the 2nd (better!) surgery, written by my dad.
I never had a traumatic experience such as yours, but I lucked out in finding a wonderful doctor about six or so years ago. I love that when I have an appointment, she looks at ME! Me, the patient! Before that, I'd only ever seen doctors who would rush in, stare at my chart while I talked, write some sort of prescription, and run out the door, on to the next patient. My doctor sits and talks to me, asks about my job and husband, then, after I tell her why I'm there, she talks about options with me. Then, we go with whatever option I feel most comfortable. I recommend her to everyone in the area who is seeking a doctor. Do not give up hope! These good, caring doctors are out there!
ReplyDeleteNow, the bad part. I live in Chattanooga, TN, which is right on the border of Georgia. My doctor is right over the border. Her practice is in a hospital, which has several other locations based in my town. I work about 20 minutes north of Chattanooga. My office is right across from a CVS so I thought it would be really convenient to have my prescriptions filled there so I could go during the non-peak hours instead of waiting 20 minutes when I got home during rush hour. I take my prescriptions in, no big woo, and the pharmacist treated me like a criminal because I had a prescription for Xanax. She said that she'd never heard of the doctor, and she refuses to fill prescriptions from out-of-state. I asked if it was a CVS rule, and she said, no, it's her rule. I told her it was silly because we are right on the border. She argued that no, that town isn't. (The county is, and that's the only city in the town. Whatever.) I asked her to call my doctor's office, as they would happily vouch that the prescription was authentic. It would also show her this wasn't just some pill mill on the side of the road, but my doctor is in a legitimate hospital-based practice. She refused. She literally treated me like a criminal. I was shaking I was so upset, but I asked for her name and license number. She didn't want to give them to me--she tried to redirect me to call CVS, but I reminded her that it wasn't a CVS issue.
When I got to my car, I was bawling and shaking. The pharmacist triggered a panic attack while I was trying to get my emergency Xanax prescription filled. Oh, the irony! I called my husband bawling, and he was furious. He called our insurance provider, and they told him that due to the law changes to stop people from abusing drugs, the pharmacists really can do whatever they want. My husband then called the pharmacist, and she straight up told him it was my Xanax prescription that caused the problem. I don't have any secrets from my husband, but I didn't appreciate her violating HIPAA and just giving my information away. She didn't know that was really my husband.
Anyway, I found out that in my state I pretty much have no rights and they can do that. I went to a pharmacy in Chattanooga, and they happily filled the prescription (yes, it was a CVS). I just felt so incredibly violated and abused. My experience does not compare to yours by any means, as I wasn't physically violated, but I was traumatized by the experience.
I really do just try to focus on the fact that there are good healthcare providers out there. You just have to be persistent and find them.
I got the info, but, in doing research, I came to the conclusion that the board of pharmacy here just throws that stuff out. It wasn't worth my time.
Count me among the many who have doctor issues. (My heart rate in the dr's office is usually around 120!)I think it's harder for us "nice" people. We don't want to give the doc, or anyone, a hard time, so we just take it and take it and take it. What would we call that in any other relationship?
ReplyDeleteAlso, I have a friend who is in labour right now and it got me to thinking. She had a not-so-easy pregnancy and I know she's in agony now, but it will all be worth it when she is holding the precious new bundle. Knowing that throughout the pregnancy helps I think. So, here's what I think you should do. Think of something you really want; a pet, a piece of art, a fantastic vacation, whatever. When you come out at the other end of this ordeal, get that thing for yourself. I think enduring pain and suffering deserves a reward!
Seriously Jen, I do hope you get this dealt with quickly and with minimal anxiety. I, too, will be praying for you.
I have never seen so many comments on one post before... see how much you and John mean to all of us! :) As many have said before me, you are most certainly not alone in this. Like you I also suffer from unspeakable terrors of doctors, tests, etc. I feel your fear completely. But please know that this time, not only do you have John there with you, you also have all of us. We will all be sending thoughts and prayers your way to help you through this difficult time. *hugs...even though I'm not a big hugger*
ReplyDeleteI'm so proud of you for being brave enough to share this. I can tell from the comments so far that you are not alone in your fears. It's not something I've seen addressed much. My daughter's husband goes to many of her appointments also. She needs Xanax before blood tests and still sometimes has a panic attack. And why is it women still have to put up with this monthly torture??? Where is it written this has to happen?! Anyway, bless you, and bless John for being such an awesome husband. May this experience be much, much better than past ones and may you soon be feeling well. Stay strong! Patty in CA
ReplyDeleteJen, you are most definitely not alone. Nealy 10 years ago I was expecting my first child, my husband and I were happy and very excited about it, we were ready to start adding to our family.
ReplyDeleteI was really sick through the whole ordeal, I was seeing an OBGYN that came very highly recommended, but she was vicious. She had the worst bedside manner I had ever seen, she was curt, uncaring and treated me like cattle. I was a meek good patient, when she dismissed my pain, complaints, etc I talked myself into believing I was just being a cry baby, and coped with it.
One night I felt extremely sick, I was in so much pain I blacked out. My husband had to actually call an ambulance. The OBGYN office said to just go to the ER and blew us off.
I spent the next 6 hours in a triage room, gasping for air, in indescribable pain, the nurses totally blew us off, even when my pulse was non-existent, they kept insisting it was just the machines taking my pulse wrong.
Finally my husband had it, he could see I was actually slowly dying, he got a doctor and they figured out I had been bleeding internally from a ruptured uterus for well over 8 whole hours. Hence, why I couldn't breathe, why I had virtually no pulse, and why my baby's heartbeat couldn't be found.
I was rushed into the ER, I survived, barely, my baby didn't. I spent a whole week in the ICU more dead than alive, with doctors not giving us an straight answer, so medicated I still can't remember most of it and sincerely, I believe it is better if I don't.
My OBGYN showed up after I regained consciousness, examined me just like cattle yet again, not a simple: "I am sorry about your loss", no "We will find out what went wrong", not even "How are you feeling?". No, just pocking, prodding, and "I am done here".
After recovering (physically speaking), I became so scared of doctors I needed my husband to hold my hand anytime I had to go for a follow up. I would cry all the way from getting in the car, until 3 hours after leaving the consult. They performed surgery to fix everything up so I could eventually have kids.
The "specialist" in charge botched the operation, so, when I became pregnant again, I ended up bleeding internally once more, landing on the emergency OR, and again in the hospital for a week... that was one awful set of years.
I am still terrified of doctors, I haven't been back to the OBGYN out of pure fear . I get a panic attack whenever I have to go to the hospital, my husband comes into every single one of my appts too, dentist, chiropractor, regular doctors.
We get funny looks, people think it is either sweet or ridiculous, but he doesn't care. He is also afraid and I don't blame him. Even though I went through all of it, I am convinced that I would loose my mind if I had been in his place. He still hasn't gotten over all of it either.
For the record... we still haven't been able to have children, it still tears me up inside and makes me cry more often than I would like. I still have nightmares about the ER, the ICU, all of it, and I don't know if they will ever go away.
Sorry for the long post, but I wanted you to know, you are not alone. I am right there with you.
Jen, you have been rocking my world for over four years now, and I heart you as much as a perfect stranger can but just...WHOA.
ReplyDeleteThank you so much for opening up and trusting us readers enough with this to post it. I can't imagine how vulnerable you must have felt as you did.
Beyond my sincerest condolences for the pain and trauma you and John have experienced, I also wanted to say that it makes me personally a better person to hear this. How important it is to have compassion, and to care. Hearing the trials of others gives us an opportunity to grow by reaching out and opening our hearts to the afflicted.
Best to you both--I'm so glad that you have each other.
*hug*
ReplyDeleteJen, you fabulous, brave woman. I'm proud of you!
something to keep in mind...
when you have a hysterectomy (and especially if you also have your ovaries out) you are likely to experience menopause-like symptoms, because, well, you're going through menopause.
Please make a plan with your doc to address these symptoms and feelings so that you can have the best experience possible.
you are brave and fantastic and you can get through this. <3
- a nurse in Boston
I've had that frigging procedure twice. It is horrible but I can't begin to imagine how bad it was for you - not even knowing it was going to happen! As long as you have decided against getting pregnant then get the hysterectomy. Two of my friends have had it and they both agree it's been wonderful. You'll need to ask everyone you know for ob/gyn recommendations and then interview them. Seriously, interview them. Check out their staff too. I'll say a prayer that you find the perfect doctor very soon.
ReplyDelete#1 So glad John is OK.
ReplyDelete#2 John is amazeballs shining armour hero type stuff.
#3 go and see the dr, and know that not all of them are bad. be your own advocate. Write things down that you want to talk to the dr about. Make sure that John knows all of it, so if you forget, he won't.
#D don't let them do anything to you unless you trust the dr. go see someone else, until you find someone you trust.
I am having a partial thyroid removal in a month and I'm pretty calm about waiting for it (talk to me in a month though). It needed to come out, it's time. It might be time for you to serve an eviction notice to your uterus like I've served one to my thyroid cyst.
Be strong. Know that you have your John with you, and that together, you will get through it.
Wow, Jen, it's so awful that you had to go through that! Try to remember that there are plenty of us out here who would be right there holding your hand if we could. Please give us an update when you can. May the force be with you. :)
ReplyDeleteOh Jen and John, I am so sorry. Hopefully this 100+ posts, there are referrals to great OB-Gyns in your area.
ReplyDeleteGood luck.
Oh honey! I just want to hug you and tell you everything is going to be okay! I have anxiety too, so I know how you can feel overwhelmed because you keep thinking about the next thing. What I usually do is take a step back and just concentrate on the now. My husband, Cybin, has been very good about helping me manage my anxiety.
ReplyDeleteAs for that doctor, shame on her! I cannot believe she would do that; lie to you and brush off your pain! I'm so sorry you had to go through that. Even though there are professional standards, sometimes people sneak in who really shouldn't be there. Some people may not realize it, but that violation can be very traumatic, and telling your story is a good thing. You're so strong to come out and say that. It takes courage to tell your story.
As for the hysterectomy, I wish you the best. While I know doctors are scary (I've had my share of panic attacks getting vaccines, so I have that same fear), you can do this. You're not going to the same incompetent doctor. Lean on john and lean on us. We love you and we're here to support you! Let us know what you need and we'll do what we can to make it happen!
Thank you for sharing your story. Love, Sabrina and Cybin
You've got one special guy there. Together you'll make it.
ReplyDeleteJen, I feel for you. Like Ellie, I am praying for you. You are truly blessed to have a man like John.
ReplyDeleteI also appreciate your guts to post this and I hope that the care and concern of your readers is coming through.
Also, does John have a single older brother? Just asking.
Been through the anxiety mill myself. The only doctors who remotely know or care are those who have been there.
ReplyDeleteThe *second* cardiologist I saw back in '91 told me I had mitral valve prolapse, which predisposes people to anxiety. I told him I had already figured that out from reading I had done. He frowned. They don't like people knowing too much, it seems.
Long story short, I haven't had a panic attack in over 20 years. CHAANGE (Center for Help with Anxiety / Agoraphobia through New Growth Experiences) helped me. John can email me at the address in my CW posts if you would like more info.
I was present with my Mom at consults, exams and such because a.) I knew how to position her in her chair and such and b.) I didn't want her to deal with doctors without an advocate right there to provide history details, listen and remember what was said, etc. All I had to do to respect her modesty was turn my head. I don't want my Dorothy facing doctors alone, either.
Praying for you.
Funny that you posted this today because I just went to the doctor. I've had unexplained swelling in one leg for 4 months. When I saw my primary 3 months ago, he didn't even look at my leg. Just sent me for an ultrasound. No clot in the leg = learn to live with the swelling. Well, I couldn't because I'm only 35 and don't want to hide my legs for the rest of my life. Today's visit was with a vascular surgeon who only confirmed what I'd already learned through Google. And that there's no treatment.
ReplyDeleteNot related, I was diagnosed with beginning stage cervical cancer 5 years ago. Part of my cervix was cut out in front of an audience of med students. I didn't sign up for that and only found out in a pre-surgery medicine induced haze. As far as being a woman and OB-GYN stuff goes, it can be very degrading.
My father had a lot of serious medical issues while he was alive and a lot of the time I had to be his advocate. It taught me that doctors are very human and mistakes happen all the time. They don't know everything. They're not gods as we would believe. And each person's medical issue is not wrapped up neatly in 30 minutes like some medical show. Even after all that, I don't fear doctors. I just try to keep in mind that you have to stand up for yourself if you feel that something isn't right.
Thanks for sharing Jen! :)
Wow, so many comments in just the few minutes it took me to read the post! I can't read them all, so I apologize if I pull an Epcot on you.
ReplyDeleteIn light of the crap that so-called doctor pulled, and your anxiety, you really ought to always have someone go to appointments with you to be your advocate. It should be someone pushy who *will* ask questions and demand answers. And keep looking for a doctor you feel comfortable with.
A few years ago, after considering ablation, I decided on the hysterectomy. I had lots of fibroids and endometriosis, so the doc had to do a lot of scraping, and I was very sore for a few weeks. But it was the best thing I have ever done! And my doc is awesome. If you are able to travel to Dallas for surgery, I can give you her contact info.
Good luck to you and John! *hugs lots*
Oh, sweetie... *HUGS* I can sympathize in a much much smaller way. I haven't been back to an ob/gyn since my last visit with an a-hole of a doc, who caused me some pain, but nothing like you went through, and I knew I was getting a biopsy (cervical).
ReplyDeleteMy mother had endometriosis and a hysterectomy when I was in middle school. I am grateful for the procedure - and so is she - but if you do that, follow the directions of the doc! She decided she felt ok, and wanted to vacuum a few days later, tore stitches and ended up back in the hospital. (Scared the HELL outta me and Dad - don't do that to John.)
I am not a fan of doctors in general, in spite of serious health concerns of my own. I don't like being bullied and/or patronized, and I really hate that helpless sheep feeling. Can you sign up for Angie's List and find reviews of ob/gyns in your area who've been highly rated?
I'm so sorry you went through that. *hugstight* I hope you're able to get the care you need and the compassionate doc you deserve.
I love that you are able to describe the good things that you have going for you as well as be strong enough to talk about the bad things that have happened.
ReplyDeleteAt 15 I went through a year's battle with dozens of doctors before a chronic illness diagnosis. Some were great and others were horrendous. Sometimes you have to fight for your rights. I don't know what I would have done if I hadn't have had my mother's unending support and determination. I'm so glad that you have someone to stand beside you through this all. And, it's not odd that John joins you AT ALL. Ten years after my diagnosis, I've only gone to a handful of doctor appointments by myself (and only with doctors I'd already seen many times and knew I was comfortable with). It's scary to walk into an office that's been a source of anxiety and violation before.
You are so strong.
Thank-you for sharing your story. I pray that you get the help you need and are able to find wonderful doctors who will support you. Tell John that he is amazing.
Oh my. Now I think you're destined to be my best friend that I only met once at a book signing. Not only are you a DizGeek, a very funny and talented writer who makes me feel like I know you from your posts, a Girly Geek who loves the same scifi stuff, AND someone who appreciates cake stuff, but I also have girly bits who have tried to kill me.
ReplyDeleteI had a Chocolate Cyst on my right ovary that nearly burst, almost taking everything with it. My first GYN missed it completely. How it was even possible, I don't know, to miss an oragne sized mass on my right side, but they did. Luckily she moved out of state and I had to get a new one. (Although I hate to say bad things about her, because in a weird twist of fate, she ended up being murdered in her own backyard pool a year after she moved). The new doc found it, and diagnosed me with advanced stage IV endo, and fibroids and all sorts of lovely junk spackling the insides of my body. nice.
I am facing a total hysteretomy here next year. I feel your pain, and you are blessed to have someone like him in your life, to never leave you with doctors! How wonderful! If you ever need a good doc, my hubby works at the best hospital in the country! He'd be able to help! It's a bit of a drive though for you ;)
I had a similar sort of experience, that left me hysterical and terrified and humiliated. I didn't seek treatment for what was potentially cancer for over a year afterwards, it was so bad. (Yelling at me that it is all in my head, that my mother's history of uterine cancer was irrelevant and that all my problems were because I was overweight? Yeah.)
ReplyDeleteBut I ended up hunting down another doctor and he did my hysterectomy. The relief I've had since then is unbelievable.
It was a violation, what that doctor did, and I'm so sorry you went through that. I had a similar experience in the emergency room and until recently would still panic. So much would have been different in your reaction had she talked t o you o r taken responsibility.I hate to make recommendations when not asked for, so will only say that I wish you so much luck, I had a hysterectomy in 2008 and it is scary but I feel better. Just, please dont Google a video of how it is done and watch it. I did that.
ReplyDeleteRegarding the very understandable trauma...I highly recommend finding someone who is licensed in EMDR. I won't explain it well...but I have been able to work through significant trauma and PTSD over numerous triggers, in a short period of time. It might help.
I have to say that I read your post with tears in my eyes. I'm so sorry that you were put through that--I am a HUGE wimp when it comes to pain, and am cringing just at the thought. As for John accompanying you to your appointments, *nobody* has any right to say anything or look askance at you; it's your choice, not your doctors' (or their nurses--I can't believe that one YELLED at you about where you chose to have your pap smear done. Again, your choice, and none of her business. Bitca.) I go see my ENT surgeon every few months--I had oral cancer 4 years ago, and three surgeries within 6 weeks, the last one done at a hospital by an ENT surgeon because the oral surgeon had reached the end of his comfort zone as far as removing tongue tissue. Anyway, my husband goes with me to each follow-up appointment. When I had an appointment with a vascular specialist about the veins in my legs, I had my sister go along as an extra set of ears. It just makes sense to have someone else there to help you catch everything that's said. The next time anyone says anything to you about it, ask them why it's their concern, since it's your body and health issues at hand. Maybe they'll think before spouting off again...or not, but at least you get the satisfaction of busting them for their rude, intrusive behavior.
ReplyDeleteMy sister recently had a hysterectomy to remove any estrogen-causing organs, since she had a double mastectomy due to an early cancer diagnosis. She's so glad to be over the monthly issues. My older sister had fibroids and two ablations, and the second one seemed to do the trick.
Anyway, sorry for going on so long. I will be praying for you (and John), and both of you consider yourself hugged in sympathy and caring.
AWWWW! Even when you are expecting it an endo biopsy is awful and terrible. I just had one done a couple of months ago and it was terrible. I can only imagine the awfulness of an ambush. I make my husband come with me to just about every doctor's visit if we can arrange it. He's seen parts of my body even I haven't seen. ;) If you ever need a buddy for your visits and I'm ever in Florida, I've got your back! :D Everything will be fine. It's all in finding the right doctor.
ReplyDeleteJen, you will be in my thoughts! My bad dr experience was also with an Ob/gyn. I found out I was pregnant, and went to my familyndoctor for confirmation, so my Ob told me not to come in until I was at 8 weeks (I was only 4 weeks along). 2 weeks later, I started bleeding, and called my Ob. The nurse told me that bleeding was common in the first trimester, and to just keep my scheduled appt. Fast forward 2 more weeks, still bleeding, I ask my husband to take me to the ER, where they do an ultrasound and discover that I have an ectopic pregnancy. The on-call OB, who was from the practice I went to, said I should just keep the appt I had 2 days later, so we could see what happened. The next day, I called a recommended Ob practice, and was in surgery on the day of my appt with the other practice. My tube had alreadtpy burst, and they had to remove it. If I had been told to go in at 4 weeks, I would have been able to keep my tube .... Hugs and prayers for you!
ReplyDeleteoh sweet Jen! I'm so sorry you've got to deal with such stuff. I personally am not fond of going to the doc. Not a full on fear, but I just don't like it. They never explain enough, never take enough time with you, answer your questions. So last year when we decided to have a baby, well, you can imagine what sort of bewilderment that put me in. But GOOD NEWS! We found a midwife with her own clinic and midwife staff and Jen, best part - they can do routine lady bits exams. I don't know if they could do what you need, but you might check it out. They seem to treat you in a much more human manner than most docs.
ReplyDeleteIn the end, we had pretty much just what we wanted for our son's birth - minimal people in the room, no medical procedures pushed on us. Nothing happening without us knowing what's going on. I hope your appointment goes well. You'll be in my prayers.
I also had an experience that left me dreading the OBGYN... It was the second time seeing this doctor and the the whole reason around my visit was that my period was very irregular and that I was a virgin. Not only did she not believe I was a virgin and had be do a pregnancy test, but she used equipment that was too big for the exam and I was in pain for days afterwards. She also dismissed my suggestion that I had Polycistic Ovaries--- which, years later I would actually be diagnosed with. After that exam I didn't see a OBGYN for years because the pain and anger from that previous exam was just too awful. Finally, I found a doctor who listened to my history and promised to be gentle and work with me rather than against me. It was like night and day. I hope you find a good doctor like I did!
ReplyDeleteI really wish you lived in Madison, WI! My mother is the best darn OBGYN out there. She is kind, caring, and wants nothing more than to make the experience as painless and (yes!) enjoyable as possible.
ReplyDeleteI'm sorry you had such a bad experience, but, as you said, there are many amazing OBGYNs out there. Here's hoping you find one! And if you're ever in the Madison area...
Oh, Jen...I wish I was there with you right now to give you a big HUG. While I don't exactly panic with doctors (I have doctors who are actually decent!) I do experience white-coat syndrome where my blood pressure will spike and I get shaky...just to have a rash looked at! It's nothing like what you go thought, but you are NOT ALONE. When I had my D and C two years ago, my then fiance took time off of work to be with me because I was a wreck. He's John-level awesome for things like that. You are so lucky and so blessed. I will pray for you...it will be OK. IT WILL BE OKAY!!!
ReplyDeleteHUGS a million times over.
"I guess it's pretty obvious that this post was just for me and my own benefit"
ReplyDeleteWell, Jen, I didn't read all of the comments but I read enough to know that the above quote from you ain't true. I'm a grad student working on my degree in counseling and it makes me glad to see you sharing your life with others in this way and seeing how it is helping them as much or more than it is helping you.
I am so sorry you are having to deal with all of this! I was diagnosed with Hodgkins lymphoma last fall and have had more than a lifetime's worth of blood drawing, scans, x-rays, test, biopsies, more scans, more biopsies (never get a bone marrow biopsy - OUCH), surgical procedures, chemo and now I'm getting radiation....and I was awake for every single friggin' thing. Lucky for me I have 2 fabulous oncologists who know that I'm the patient who researched everything before my first appointment and came in with my notebook and a thousand questions. I ask them every question I have and I write everything down so I don't forget (chemo brain sucks). It helps a lot as I don't feel the loss of control quite so much. I've also written down all my meds, what happened every time I went for chemo or a test or a visit or a procedure...it helps to vent a little and it helps keep things straight for me and it's the way I deal with some of my anger.
ReplyDeleteI guess what I'm trying to say is that you need to do what helps YOU get through your medical stuff. I'm anal and need everything listed and commented on. The other thing you need to remember is that doctors are people and some are awesome and some you are just not going to get along with, so find a doctor you TRUST and you like - it makes a HUGE difference. I don't mind seeing my doctors as I know they tell me the truth, explain the what/why of everything they do, the risks and the reasons...
I haven't had the female issues you have but I will say menopause was great as I don't have to visit the feminine products aisle ever again - so you can enjoy that part at least.
You are very lucky that John takes such good care of you. My hubby has been there for me with everything I'm going through and it makes it bearable.
Lots of hugs and good wishes coming your way.
I had my body, acting on it's own accord, push a 9 pound baby out of me in 15 minutes with no pain medication.
ReplyDeleteTrust me when I say that your girly bits ninja sneak attack, makes me want to clutch my uterus, while rocking in the corner and sobbing my eyes out in terror.
I really wish and hope for the best for you with this procedure. And you are very lucky to have John, I'm pretty convinced he is the best guy in the history of ever :).
You were not a wimp about the pain of an endometrial biopsy. I had one in college (After 2 months straight of bleeding) and they hurt.
ReplyDeleteAnd there are doctors out there who just should not be doing what they're doing. The same doctor who did my biopsy, after he finished a routine Pap smear, sat there and told me because I was overweight and didn't have a boyfriend I was probably depressed and should see a therapist. While I'm still laying on the table, half naked under that stupid paper sheet. I managed to get out of his office and get home before I broke down in tears completely.
I still lived with my parents at the time, and I found out a few years later that my dad had called and really lit into the guy. I love my dad.
But it is really important to go to the gyno. You already have an appointment for your current problem, but after all this is done, I'd suggest finding out if there are gynecologists in your area who specialize in working with women who have survived abuse. You may be less nervous about going if you know the doctor is going to understand your fears.
If you don't want to do that, try looking for a doctor that is NOT an OB. A lot of times they are a lot more knowledgeable about women's issues because they devote their whole practice to women's health.
Good luck, Jen. I'm so glad you have John by your side to help you.
Okay, I didnt read all the comments, but....
ReplyDeleteKristi, I'm right there with you on the Mirena insertion! and
Texaspride28, thank you because extraction/reinsertion is only months away (the benefits outweighed the memories, even when I had to drive 1200 miles 2 days after the last insertion)
Jen... if you aren't comfortable with new doc, find another - and another - and another, if need be. My absolute favorite obgyn worked in the same practice as my most horrid obgyn - the one who said the hernia I had developed less than 3 weeks post c-section was actually just "because you're so fat". Pretty sure the emergency surgery I had to have on December 23, 2 hours after meeting the surgeon, would argue your blankety-blank fat comment right to hades, stupid doc.
Sorry, I get worked up ;-) My point is, like others have said - good docs, bad docs - but also, docs that you will "click" with and ones you won't. Don't ever be afraid to say "this isn't the right one" because it's your body - and if you don't advocate for yourself, who will? (okay, John will - but that doesn't let you off the hook!!)
Best of luck, Jen - and best wishes for a speedy recovery, John!
So... no, you're not alone. At all.
ReplyDeleteWhen I was young- only 23- I found a lump in my breast. A big lump (they were big breasts). It was about the size and shape of a tootsie roll. I went to my OB-GYN who I loved to get it checked. She felt around and said, "No, you're so young, I'm sure it's noth- oh. I see." She sent me to a specialist for an ultrasound.
That "specialist" was a jerk. He was rude and condescending because I was only 23 and must be imagining things. He never felt my breast. He just took the ultrasound wand and started jabbing into me. Hard. So hard, he pushed the lump (whatever it was) so deep into my breast tissue that I couldn't feel it anymore. He then pronounced that he had cured me and would send me a bill.
I limped to the car (did I mention that he jabbed me hard?) and called my mom in tears. But there was nothing she could do- I was 800 miles away in grad school. I spent the next few hours turning red, then purple, then black from where he had slammed the ultrasound wand onto me.
I told my OB-GYN and she handled it. But oh... so hurtful.
HOWEVER! Fast forward 10 years- now I live in another state and I have THE BEST OB-GYN in the world. Love him (and I never thought I could handle a male gynosaur)and he's taken amazing care of me through my two insanely complicated pregnancies. I wish I could share him with you but you're way down in Florida :(
Keep looking. There are great docs out there. And we appreciate them more because we have seen the worst.
Love to you and John. Take care of each other!
I don't care what anyone things, if you need your hubby there, you have him there. I'm so sorry you have to go through this, sometimes just holding your hand will make it easier.
ReplyDeleteIt's nice to know that even my heroes have hard days. I doubt we share the same faith, but I will be praying for you all the same.
ReplyDeleteYou are a hero of mine Jen. I know I've said that every time I've commented/emailed you, but it's true. You have a lot of amazing qualities, and I don't even know you!
Good luck, and try to stay calm, and thank goodness you have John!
God, that's horrible. I don't know what I would do if a doctor did that to me, and I've been to plenty of lady-parts doctors complaining of period pain and talking about endometriosis. (I always just get the same thing from them, "Is it worth it to you to have the laproscopy or not? your call.) I'm totally afraid of medical procedures and surgery so I haven't ever had anything done about my probable endo.
ReplyDeleteI am on a birth control pill right now that has helped a lot, in that it shortened my periods, made them lighter, and shortened the period of time I am in pain, rather than making the pain less. It's the first one out of probably 5 different pills that has actually helped me enough to be worth the side effects of the pill (For me, on this one, lack of sexual interest. Last pill it was crushing depression. This one, I went on, didn't like the side effects, went off, went through six months of unmedicated periods, went back on.)
I have had good luck with OBGYNS and the other medical professionals I've seen for my gynicology needs. I started out going to nurse midwives that my mom (a nurse) knew and they were awesome, but once I started having more serious problems that might require surgery, I had to find a real doctor and that was scary. I picked a name off a website for a female doctor, older, who specialized in dysfunction. She was alright, but then I switched insurance and I had to go somewhere else, so this last time I asked my GP for recs and she sent me to one of the most well-loved OBGYNs in town and she is very cool. So if you have a doctor you trust, especially one kinda like the sort of doctor you want (for me older female sorta-hippie), I recommend asking.
And I know how much it can suck to see your spouse in pain. My husband has been admitted to the hospital for emergencies twice in the last few years and the first time he was screaming in pain and I couldn't do anything and that sucked so much. I can't believe your husband was in so much pain for his procedure. I have had several epidurals for my chronic back pain and though they numb you first, it still can hurt when the needle gets to your nerves. It's made me sweat and be unable to walk afterward, but never pass out.
I've been extremely lucky so far in that I've had no trouble with mean doctors or things of that nature.
ReplyDeleteBut, I have a severe fear of needles and get woozy with blood. Heck, even talking about it makes me jumpy and twitchy. I've come close to full-on panic attacks when forced to watch medical videos/have medically-based discussions in class.
Unfortunately, I'm anemic, so my doctor likes to check my iron levels every so often. The first time, I almost passed out, but was able to lean on a padded bar that stretched across a special chair they had me sitting in. The lab tech told me to try getting it done lying down, so I talked with my doctor and she agreed to have it done right in her office, though they don't normally do that. The second time I had my iPod going and tried not to look and it went better. I'm still weary though.(And I'm due for another check sometime soon...)
And though I've been ok, my mother had a terrible experience with a dentist as a child that left her unable to visit one for many years. She goes to one now, but makes sure that whoever is taking care of her knows about her fears before hand.
So we can totally sympathize with your feelings on this stuff. I'll keep you in my thoughts and prayers and just remember, you are definitely not alone.
*Anti-Medical Stuff Group High Five!*
Jen, your post just made me want to hug you, give you chocolate and shower you with geekery. I have had some bad doctor experiences. I won't go into details but my pediatrician was horrible and left an easily diagnosed problem that my mother had begged him to test me for untreated...his attitude and manner caused me to stop seeing doctors altogether unless I was pretty much dying. So...I could easily jump on the "doctors suck" couch with you; however, I will say that though hard to find, there are wonderful doctors out there. It's often like finding a needle in a haystack, but when you do find them it is awesome.
ReplyDeleteI did have initial problems with my lady parts doctor at our first appointment (she was super blunt and was pretty much telling me things I already knew and I was in tears as soon as I reached my car)- to the point where I almost refused to see her again. My primary care begged me to give her another chance, so I did, but the next time I saw her before any exam started I laid down some major ground rules. I told her how she had made me feel and really put my foot down. She genuinely listened to all I had to say and actually took my feedback well. Maybe when you see your new doctor you could stop them before anything happens and have a sit down, it might help to ease your fears and anxiety over it. I know it sure helped mine.
You'll get through this! *hugs*
I also had an unexpected/unannounced endometrial biopsy. I was 20 and completely alone, went in for a pap and suddenly find this instrument and a bunch of fancy words being thrown at me. The pain wasn't horrible, but I am the type who has never handled doctor visits well, and I ended up almost passing out on the table, naked covered under a thin sheet, alone. The doctor finished what he needed, then he and the nurse told me to lay there and they'd come back to check on me. Some time later, and the door was still cracked open and I was still on the table, alone, under the sheet. I don't remember if they ever came back in; I think I finally just grabbed clothes and got dressed and dashed. Then cried my eyes out in my car and for the remainder of the day.
ReplyDeleteI was humiliated, and didn't understand what was done or why. I thought I was just being irrational, but the experienced scarred me. Thanks for sharing your experience, as hard as it was (I cried while writing this, too). I actually live around the Orlando area.. the doctor who performed mine is still practicing; otherwise I would question if it was the same doctor.
Jen, I am so sorry that you are going through this, but I am SO glad you have John by your side! I had an endometrial biopsy, so I know the pain, but I was informed and well aware of what was going to happen. I was NOT ambushed by a so called "professional." Hmph. If I could give you any advice at all it would be to remember how you felt and vow to NEVER let any make you feel that way again. They may be doctors, but YOU know how your body feels. And if the doctor treats you poorly, go somewhere else. There are good docs out there, but sometimes you do have to search. You and John are wonderful awesome people, full of win, and you should NEVER be treated like you aren't.
ReplyDeleteOh man, I cannot believe they would do a biopsy without telling you first. I had one done a few months ago but I knew it was happening and that was bad enough!
ReplyDeleteEven though it's scary you definitely should not ignore the pain! Just let the next doctor know that if they touch you in any way before clearing it with you first you will bite off their face.
I ignored what we refer to as "lady symptoms" for so long that I ended up needing a blood transfusion and a hysterectomy for endometrial cancer. Scary stuff but now that it's over I am glad I went through with going to the doctor despite overwhelming anxiety. I quite like being alive :)
So you can do it!! It will all be okay :) Just remember the biting off your face thing. It does wonders to make sure people are doing what they are supposed to.
Jen,
ReplyDeleteSo, so sorry that you had to go through such a horrible experience like that! :( I, too, have had my share of bad experiences with the OB/GYN docs. When I was 15 or 16, they were trying to figure out why I was having so much pain with my cycles. So they did an internal ultrasound. Now, I don't know what the tools for that look like now, but back then (about 20 years ago) it looked like a damn crevice cleaner from a vacuum and the end they used was the larger end where you would attach said vacuum! Something that size just does not fit well in that area - especially in a teen who was not sexually active at the time.
I've also had one doc who after being told that I had been raped within the last few years basically told me that I needed to just relax and perhaps next time I should take a Xanax or something before the procedure (just a regular yearly checkup/pap). This after not being the least bit gentle with me and leaving me in tears.
But now, I have an awesome, wonderful doc. It's the physician's assistant in my PCP's office. He knows my history, he checks with me every step of the way to make sure I'm still doing okay and will pause to give me time to get myself together. My mom usually goes with me as I don't currently have an S.O. and I usually cannot drive myself home afterwards. And even though I still have all my lady parts, I only have to get the whole exam and pap once every 3 years now which is a god send.
I can only hope and send good vibes that you can find someone as good as my current doctor is to me. And YAY JOHN! for insisting on going into the room with you.
Hang in there. I hope you can find relief from the pain soon and can find a compassionate doctor to help you get through the procedure.
Bless your heart - it's horrible and you are not alone. Like everyone else, I'm going to chime in my two cents worth:
ReplyDeleteFirst, I had a very similar experience as your biopsy and it was h-e-double hockey sticks.
Second, As a result of all of the h-e-double-hockeysticks I had a hysterectomy with some other stuff done. It was at my persistant and sometimes angry and ugly insistance and I don't regret one minute. It has been 10 years and I have felt so much better. I also had endometriosis and fibroids.
Third, keep John close by your side and you stay by his. My mother was an ER trauma and ICU nurse for decades. She refuses go to the doctor without taking a family member, and doesn't allow any of us to go alone even for the most minor of reasons. There is safety in numbers, there is someone to help listen to what the doctor says, and there is someone there to yell STOP when something doesn't seem right. We have a large family and just by playing the odds we have had situations where the presence of a family member meant the difference in life and death for the patient. Accidents happen. Doctors and nurses are humans who sometimes make honest mistakes and sometimes are total idiots. Having John by your side will help in so many ways (and it doesn't hurt that he's completely adorable).
I've followed you for several years and admire the relationship that you and John have. Hang in there; take your Xanax and even ask for more if you need it; and stand up for your rights as a patient. But also, don't be too hard on yourself, it's hard being a patient and you are a really nice person. There are some truly fabulous doctors out there. Keep looking until you find the one that works for YOU.
Please continue to keep us posted and don't worry about our sensibilities. We will be with you in spirit as you go through this. Good luck.
and for Kristi: I also had an IUD and found that coming out was much, much more easy than going in. Fortunately, I had a wonderful OBGYN at the time and he attributed it to his 'fast Italian hands'. Good luck to you, also.
I'm so sorry to hear about your harrowing experience!
ReplyDeleteAll the comments make it clear that you are not alone! I'm not sure if you'll find it useful, but I've found comfort in dealing with my own medical issues reading this awesome blog about chronic illness. The author has had her own terrible experience with doctors, and now suffers from medical PTSD:
http://makethislookawesome.blogspot.co.nz/2011/12/medical-ptsd.html
*hugs*
I can't believe they did that procedure without consent. And then that the medical board did nothing when they received your complaint! I'm outraged for you. That definitely is a violation, and no wonder you haven't been back to an OB since.
ReplyDeleteBTW, I've had a baby...without medication...and your procedure sounds worse. I'm so, so sorry. I hope the hysterectomy goes really well, and you can put this pain behind you!
I don't have any advice, just sharing that I'm so glad you have your John to stand by you through this, and vice versa. I was alone until my now-husband stalked and ninja-asked me out when I was 30. We were married 10 months later. The next summer, when I was pregnant with our little Madeline, I was diagnosed with thyroid cancer. Since then there's been the thyroidectomy, birth, and now on Monday, radioactive iodine. That means I'll have a week or two in isolation, away from my best friend/husband and 5-month-old daughter. I'm not certain how I'm going to handle the solitude (something I used to insist on), but he'll be a phone call/Skype away, and I'll have years more to cuddle with him once I do this treatment. If I didn't have him to face this with me, I'm not sure how I would have handled it. I'm not sure I would have even found the cancer, as I made the doctor check my thyroid out for the baby.
ReplyDeleteAs for finding good doctors, do you know any nurses you can talk to? I decide who I'm going to see by asking my sister, a nurse who used to work at the hospital. She knows who has a good bedside manner, who's a hack, who's head is you-know-where. The nurses are the ones in the know. Sending you lots of prayers and robot hugs. :)
(It says down there that I have to prove I'm not a robot. That makes me sad. :'-( )
Doctors DO suck, for the most part. They forget they're human. My entire childhood is marred by the recurring illness of my mother, mis- or undiagnosed by doctors who didn't understand her so instead they told her it was in her head. She lived for decades with unbelievable pain because she thought they knew better.
ReplyDeleteYOU know you better than those dumb docs, and the good news is that if you go in there armed with that attitude, they actually WILL listen. YOU know you have post-traumatic anxiety because of what happened. Explain that, and MAKE them listen. Be prepared to walk out if they start doing stuff that scares you. The only good thing that ever came of my mom's years of being belittled and abused by doctors is that I learned how to never let it happen to me. The number one thing I learned is to tell the doctor: "Stop! Wait! I don't understand what you're talking about and I categorically refuse any more treatment of any sort until I DO understand. Now, either you can explain it to me, or I can go find a doctor who will."
You do not have to be a victim of medical hubris. You have a right to understand your healthcare. You ABSOLUTELY have the right to control what happens to your body. And if necessary, you have me - an utterly unqualified but very feisty redhead who will fly out there and raise some hell on your behalf. Seriously. I worked in pharmacy for 12 years. I have some practice talking down to doctors offices and you are welcome to my expertise at any time, day or night. :)
Thank you for posting something so deeply personal..I know it wasn't easy to do. Even though most of us have never met you in person, clearly you can see just how much all of us care about you! Please keep trying to find the right doctor - they really are out there. One that will explain every step of what they are going to do BEFORE they do it and makes sure you understand. I am so glad you and John have each other to support the other through your ordeals. My prayers are with you! **HUGS**
ReplyDeleteOh, Jen, I'm so sorry you're going through this! I'll spare you my medical nightmares, although there are several, so you are NOT alone...Good doctors actually recommend that you bring someone with you to doctor's appointments, particularly if it is something painful or scary or you may be hearing bad news...that way there is someone there to advocate for you and also to remember important information you might forget in the fog of having been poked and prodded and whatnot...so whatever if they look at John sideways, screw them!! He has every right to be there. Hang in there!
ReplyDeleteOk, it doesn't look like you can directly reply to comments, but at the guy who posted above, Scotland? My husband has colitis and the first time he had to have a colonoscopy the prep was THE WORST THING EVER. Like, honestly by the morning he was just unable to walk and crying and they finally admitted him to the hospital because he was in so much pain.
ReplyDeleteHe has had one colonoscopy after that, once his condition was controlled, and it was MUCH better. I mean, the prep isn't fun, but it's the painful colitis flare that makes it such torture. So hopefully, if you have to have another one (and you will, as you said) it won't be nearly as bad. I think there are options about what kind of prep stuff you take, too. Like sometimes you can just take some pills instead of having to drink all that horrid stuff?
I don't monthly pain nearly as badly as you do, but it's still miserable. I hope you find a better and more understanding doctor this time! I'll keep you in my prayers and I'm glad you have John. =)
ReplyDeleteConsider yourself hugged and your hand held. To have stood up to this pain for so long while making all of us laugh every day says you are a brave woman who can prevail.
ReplyDeleteJohn, take care of her, please.
Wow, so many comments, I'd love to read them all.
ReplyDeleteFirst off I just want to say THANK YOU for this post. Far too many women are quiet about the horrors that we face in the exam room, so many times I hear of things like this (or getting cut by the tool used in a pap smear inside? Not cool) or many other things we ought not deal with. Let along that Gynecology is still one of the most medieval practices in medicine. If they treated chicken pox, or men's health or cancer the way they treat gyno issues every doctor would be sued. I just feel like medicine hasn't progressed enough in this area.
Most women I know have issues, how is it that most women have issues? That's not irregular, that's regular, and it's not OK.
I will be crossing my fingers for you, but in my experience, if you haven't had kids yet, often doctors won't allow you to have a hysterectomy unless they think it's life threatening. I know countless women who in their 30's have decided they aren't having children and being disabled one week a month isn't an option but the doctors refuse to do it. Then again, they also won't do the procedure you already had... but even the ones who has had it. These women are told "you might change you mind about kids" even the lesbians, even the ones against kids, even the ones with plans to adopt. It's insane. There is a medical need and it needs to be fixed.
I have many issues like you. I spent 8 years on the depo shot which caused some issues I didn't like (mood swings, weight gain) but it fixed the problem because I no longer had a period. I have recently switched to the pill, hoping that I can still no longer have a period and have less issues. So far after four months of taking the pill (and never taking the sugar pill, just full pill every day) I have not had a period, the mood swings have gone. Granted the overlap caused me some extra hormone stuff, but that's gone now. I still fear the day I get my period again. Worse yet, if I decide to have a child I fear going off the pill and getting my cycle again. The fear of my cycle is terrifying. Worse yet, when I was living in the US (born and lived there till I was 30) I had far too many doctors not take my issues seriously, not take my terror seriously. I've had what I like to call manhandling doctors, and kindred ones. Well no, one kindred doctor, and a lot of clinicians, I find clinicians to be more understanding, they were all through Planned Parenthood, they cared about my health more than all the doctors (save one) that I had. Now I live in Canada, so far, no one has batted an eye at me wanting to suppress my period. They've all been very supportive and helpful. I'm not quite ready to go full hysterectomy, but before my hormone treatments, I was, I was there.
Again, thank you
There's so much I want to say to you. That I've been where you are. That having a hysterectomy (and in my case I had everything removed) was the best thing I've ever done. That my heart just aches reading what you've said because I know where you are.
ReplyDeleteSo, I'll say this: At 25 I had mine removed due to severe problems. I looked and looked until I found a doctor who agreed with me that my pain was just unbearable and that the emotional problems I had along with it (PMDD) were not something I should have to live with. I have never looked back.
I will keep you in my thoughts and prayers. I am not going to pretend I know how scared you are, but I suffer from an anxiety disorder as well as a mood disorder, so I might have a clue. I just want to give you the biggest hug and tell you that you'll be ok. I made it through it, so can you.
I'm still young, so I haven't had to deal with pain in my lady parts too much, but, I too have a horror story about them and doctors. Since I reached "womanhood," I've never been able to use tampons. This was no big deal, since pads seem fine to me. When I got older and it came time to see my lady parts doctor every year, I would experience severe pain every time they tried to stick something in me, even the smallest of speculums, even the pap smear thingy. Just sticking a finger in was enough to make me gasp and rear back from the pain. No doctor ever explained that this wasn't normal. After a few years, I ended up seeing a different doctor. This one, a dude, was cold and kind of an ass, but I thought nothing of it. After all, we weren't there to be bffs, he was there to make sure that I didn't have anything bad going on down there. He didn't listen to me when I said I was a virgin, and didn't even look at my parts before grabbing the regular sized speculum. No go, I nearly screamed when he tried. He then used the small speculum, and it still hurt, but he got it opened. He then did the pap smear, and told me to meet him in his office to discuss things. Well, he completely ignored the birth control I'd been on previously and changed it for no given reason. I ended up switching from having my period once every three months, which was manageable, to every month, which was not. I was on birth control for the pain my period caused me, and while birth control didn't help much, having a period only three months was much easier. However, the doctor didn't seem to notice or care about my complaints. He also told me that I had extra tissue around my vaginal entrance, and this was why I had never been able to use a tampon. He told me to try to break through the tissue with a tampon. This seemed odd, but I didn't say anything.
ReplyDeleteDuring the year in between, I still didn't try to use a tampon. It just didn't seem to be that pressing, I wasn't planning on having sex, and I was happy with pads. Then I go in again for my yearly check up, and the doctor I had previously seen. So I saw another doctor. And she was wonderful. She was kind, and understood all my problems. When she saw the extra tissue, she said I would need surgery to remove it. I mentioned what the other doctor had said about using tampons, and she was astonished. She said it could be done, but it would be extremely painful and bloody. I also discussed the birth control, and she changed it right back. I then had the surgery to correct the extra tissue, and now there's almost no pain when I go in for check ups.
So, please, don't give up on doctors. There are good ones out there, you just need to find them. And don't be afraid to ask them to explain what they're doing, or why they're doing it. The good doctors will be happy to explain, and the bad ones will show themselves to be bad if they don't, or they do it with annoyance. Meet the doctor beforehand, and if you feel uncomfortable at any time, say so. I learned the hard way, and so have you, but it doesn't always have to be hard.
Oh, Jen. So many hugs coming your way. My trauma was being six, being a tough stick, and having a sadist take my blood. I won't detail it. Since then, I've had some good vampires who have restored my faith...but even the good ones are told they only get 3 attempts. Then it's time to bring on someone who is having better luck that day!
ReplyDeleteYour previous doc deserves to be squared up upon and kicked in the taco. You DON'T do something to someone's body without their knowledge or permission. Being upset that she did doesn't make you weak.
Just wanted to lend you some moral support and give John some applause. I'm glad you both have each other!
I'm so sorry, Jen, that things have been so horrible for you. Keep your chin up and remember to breathe. It will all be okay. <3
ReplyDeleteSometimes the bravery of others gives us the courage to not only speak up, but speak out. You've given us a mighty gift. I know I (and others) will read this and remember your courage when we need it most. Thank you.
ReplyDeleteDearest Jen! (I hope you don't mind me calling you that right now, I just feel like we're so much alike, and could be friends if we ever met) I so feel your pain. I don't go to the ob/gyn at all, and I've never had to deal with an unexpected procedure. I'm traumatized by just getting naked for a stranger to look at, I don't care how professional they are or how clinical it's supposed to be (it's not about them, it's about me). I have suffered with anxiety and depression for years and years now, and traipsing around from doctor to doctor trying to sort that out led me to just working that out for myself, and generally it's been really effective. My general philosophy with doctors is that I'm not going until I can't ignore whatever it is that's bothering me. Poor doctors, I know they hate the kind of patient I am, but I just have to do what works for me. I did finally find a gp that I Love, because the first time I went to her she put her clipboard down and looked at me while I talked. But the OB I went to when I was pregnant and who did my delivery was the exact opposite and it was pretty well a terrible experience, so I'm twice as gunshy now. I can totally relate to the fear and anxiety and general desire to run screaming the other way when it comes to all things medical, but I also know that once you get something dealt with so it doesn't bother you anymore, that can be a great relief. In fact, you've just inspired me to go see about some stuff I've been putting off because I hate going to the doctor so much. Thank you for being brave enough to post this. I'll be thinking of you and sending you much Love. (sorry this is so long.)
ReplyDeleteI've also said a quick prayer for you. And i would also like to advocate for an advocate being a good thing. i've never been to the ob-gyn for myself actually) but i have had experiences which drove the importance of advocacy home. i'm a caregiver, and one time when my mom was in the hospital the staff gave her Haldol for two nights before i knew about it- despite there being an FDA black box warning against the use of such antipsychotics in elderly patients with dementia. They told me they gave her something to help her sleep, and it wasn't until the doctor casually said the name on her second full day there that i realized this meant antipsychotic not sleeping pill. If i wasn't an MSW, i might not have known it even then. i did not give informed consent to this drug, and she was not able to do so. There are good doctors (we found her one) but there are doctors (like that awful ob) who will do things without your informed consent because they believe it's right, if you or someone you love isn't on their toes. Informed consent is vital, and should be one of the things at the heart of any helping practice whenever possible. you didn't have it, and that stinks so much. Give John an extra hug on our behalf- we're glad you have him.
ReplyDelete