IC Patient Successfully Sues For Mistaken Hysterectomy

[icnmgrjill]

IC patient Angela Burch, wife of Army Major Daniel Burch, was awarded $2 million by a federal judge earlier this week, resulting from medical malpractice case relating to her diagnosis of IC. Ms. Burch had been a pelvic pain patient for several years. In a situation that we believe is quite common, her physicians disagreed on the source of her pain. Her urologist believed that she had interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Regrettably and inappropriately, a hysterectomy was performed despite the fact that her uterus was perfectly normal.

We have received numerous reports from patients who have had a hysterectomy for the treatment of their pelvic pain only to discover, after the fact, that their pain came from the bladder rather than uterus. Some were quite young, such as former ICN Assistant Manager Diane Manhattan-Lopresti. Given the outstanding diagnostic methods we currently have today, such as the PUF questionnaire, this simply should not be occurring. Our hearts go out to Ms. Burch and her family. We applaud you for your courage in bringing this legal action and in telling your story!

http://www.marinetimes.com/story.php?f=1-292925-1519620.php

[hollipop]

Wow!

[kadi]

I went to see a new gynecologist about a year ago. The first thing he said when I told him I had IC was that I should have a complete hysterectomy. I asked why, he said that it would heal my bladder. I asked him how removing other organs could heal an inflamed one and his next question was "Why do you want useless organs if you are not going to bear children?" I got up, told him he was not the doctor for me, and walked out. I'm just sorry I didn't ask for my copay back.

I am so glad he was not the first doctor I saw for my IC pain....

This probably happens more often than we know.
Kudos to Ms. Burch for being courageous and tenacious enough to bring this to light.

[Casi]

It must have taken a lot of courage to go thru all of that. I know after my hysterectomy everything got much worse than it was before the surgery, and like most women I was having the surgery to feel better 2 years later, still struggling...
Thanks for posting that!

[ICNDonna]

I also applaud for Angela Burch! I also had an unnecessary hysterectomy --- and I developed IC almost immediately after the surgery. That was 32 years ago.

Donna

[patricia1]

I to had an uneeded hysterectomy. I started suffering in 1996 after my c-sect. I then started seeing my gyno for the pain and all the other bladder stuff. In 1999 we dec to try the hystrectomy to see if this would help my pain. Nope it did not. It was 2 yrs later I got my diagnose. I have always felt and said that IC cost me to lose a body part that I did not have to lose. I was only 28 at the time of the hystectomy.

[dancemomof2]

Good for her!!!!

[Sarojini]

I haven't undergone a hysterectomy but I did have a doctor (a GYN) say that if I would get pregnant and have kids, all my IC symptoms would disappear. Uhhhhhh....

I don't know why these gyn's think doing something, anything to the uterus is going to help the bladder. I applaud Ms. Burch and I am glad things worked out in her favor....

[Janie Miranda]

I was told to have a hysterectomy by one of the first doctors I saw for my IC problems. Thankfully, I had already found the ICN message board here and had figured out on my own, what my problem was . . . then all I had to do was find a doctor who could diagnose and treat me. After finding that doctor (Thank you, Dr. Wiygul) and getting on the right meds and the diet I began to steadily improve. . . and thank the Lord, I didn't go through with the hysterectomy. Dr. Wiygul told me, "what ever you do . . . don't let anyone do surgery on you. It will only make you worse". I've taken her advice to heart and the only way I will ever permit surgery is if I have cancer.

[icnmgrjill]

Thank you everyone! I would really love to hear from other patients who were also told to have hysterectomies. We need to do a story on this BIG TIME and put some pressure on various medical associations to prevent this from happening further.

Jill

[Judy777]

I think some of the OBGYN's think they can solve everything with either a birth control pill and if that won't work how about a Hysterectomy.

I was diagnosed with IC and Endo last year in July. I had the Endo lasered off. This did not help with the painfull periods/ovulation and pain during intercourse in fact if anything it has gotten worse. I was told having a Hysterectomy would get rid of my Endo. I even asked for my Urologist's opinion and how having a Hysterectomy would affect my IC and he said it sounded like a great idea and that he would recomend it. He said he has seen where some patients bladder problems just disappeared after having a Hysterectomy.

[Babs RN]

I have been part of the military health care system as a child, active duty, and as a spouse. While I a found a few truly professional caregivers overall, I am usually pumped full of pain meds, operated on, pumped full of meds...well you get the picture. Throw in a wife whose DH is gone and you are just plain :loco:

Hugs,
Barb :grouphug:

[kadi]

Hmm, gynos... If the only tool you have is a hammer, everything looks like a nail?

[hollipop]

Kadi - did you come up with that "If the only tool you have is a hammer, everything looks like a nail?" thing by yourself? :biglaugh:

I need to remember that quote....you are so witty! :bow:

[tigger_gal]

you know that is so sad.. My doctor removed my apendix, thinking that was where my pain was.. and after it was removed I still had pain, and was told it was in my head, or it was flank pain..... maybe I should have looked more into this.. my apenix was taken out 10 years ago..
I am happy she won her law suit.

[kadi]

Hey Holly,
Wish I did come up with it, but no, it's a quote, don't know from where. But it seemed to fit here:)
Cheers!

[Silverfox]

The Hers foundation is very helpful when a women are told the need a hysterectomy and other female surgeries. I have supported this group because I had an unnesscessary hysterectomy. After I had this surgery a Dr. told me it was not needed and that he had the skill to keep the uterus in the body. That was over 30 years ago so now they have developed a newer surgery to save a prolaspe of the uterus.

I did not rush into it, (I thought about it for 2 years before I went back to the Dr.) but I was in so much bladder discomfort surrounded by people who were demanding that it be done. When in severe pain you get so fatigued from it that you lose the ability to make a good judgement for yourself. I try to remember that, when I feel myself blaming myself for allowing anyone to lie to me and do me harm. I think all Drs. take an oath to first do no harm and I will not let this happen to my two daughters as was done to me.

See and talk to the people at the Hers foundation if you are told to have pelvic surgery or a hysterectomy. Please Support this foundation so it will be different for our daughters!

website is: www.hersfoundation.com

PLEASE SPREAD THE WORD ABOUT THE HERS FOUNDATION SO WE CAN STOP UNESSCESSARY SURGERYS ON WOMEN! :grouphug: :grouphug:

[dg2901]

Count me in on the unnecessary hysterectomy to help with bladder/ pelvic pain. Found out from another GYN the surgery was unnecessary, though I had already figured this out on my own. Now not only do I still have the bladder pain I now also have a very sore vagina, adhesions, and another prolapse (had prolapse prior to hyst but was asymptomatic)--2.5 years later.

And I had to laugh at the hammer/nail analogy--the Dr that did my hyst was named one of the two--you guess which one.

ugh
diana

[celine]

WOW-Can I relate. I was having pain (in my bladder), but "they" said I needed to have a hysterectomy.So I did. Same Pain, still there.hhmm...Let's take out your gallbladder.So they did.Same pain, still there.hhmm... Well, we cant help anymore,(figures,not much more to take out)We will send you to a pain doctor. I told him my symtoms, he says "sounds like it could be IC.He sent me to ICHC.(Iowa City Hospitals and Clinics) There they did a hydrodesention on my bladder.Wow-look at that,I have IC.Clear as day.You would not believe all the pain and years wasted to finally get my diagnois. And now look-I cant even have more kids!!! Anyway that's my story,all summed up. So,I'm real glad for that lady.Sure wish I could claim that against my GYN. Thanks alot for the article Jill. Celine

[ihurttoo]

Kadi - did you come up with that "If the only tool you have is a hammer, everything looks like a nail?" thing by yourself? :biglaugh:

I need to remember that quote....you are so witty! :bow:
I love that quote too! I had never heard it before either. Wish I had that one to tell it to the psychiatrist who told me that all chronic pain had ".psychological origins"!

[Bianchi]

Gosh, so many people having hystorectomy before they discovered it was IC. Same thing happened to me 12 years ago. I complained about pain, pressure on the bladder, urgency and was told by my OBGYN, that a hystorectomy would take care of all that. NOT! I struggled with it for years before going to a knowledgeable URO who told me right away I had IC.
Wonder how many women went through this in this country alone.
Bianchi

[Trac348]

I also had a hystorectomy. I ended up having a blood clot. They did not know that though when they went in. It was for pain that ended up being IC. Thank good they found the clot, but it was only by God that they found it, because they were'nt looking for that.

I think the surgery made my IC worse rather then better. When the Gyn did not know what else to do, I told her I was going to a Uro specialst to see if it is IC, she said go ahead but that cant be it.

I am very thankful that they removed the blood clot,but as far as pain it was not the cure all they and I wanted it to be.

Tracie

[hoping4acure]

I too applaud Angela Burch.

I wasn't the victim of an un-necessary hysterectomy
BUT my mother was. As a matter of fact there were several patients around the time she had hers done....It did catch up to him, and he was arrested!

[Babs RN]

I am beginning to think about drafting a letter to the top docs for the millitary branches as well as some of the topic written and TV media outlets.

Hugs,
Barb :grouphug:

[Amyinagony]

UNNECCESSARY HYSTER HERE TOO!! (normal uterus-per pathology report), for chronic pelvic pain (without EVER having children!), turned out to be of bladder origin and ended up with IC (5yrs after the hyster) to be the diagnosis when my pelvic pain persisted after the hyster.
VERY SAD! AND MAD!! :mad:

This has always been a very sad part of my life (NEVER having children), and I deal with sad feelings every single day of my life. My organs are gone and nothing could ever replace what I've missed out on by lossing them. If only I had known about IC before then. When I first learned about IC (which was after being diagnosed), I compared my symptoms with that of IC, I was sure than that is what I did have. Not only that, but the writting was on the wall the entire time, and THEY (the doctors!) (the professionals!) missed it!! :headbang:

I applaud Angela Burch too for sueing.

I totally agree Jill: We need to do a story on this BIG TIME and put some pressure on various medical associations to prevent this from happening further.

Another misdiagnosis that I had, before the IC diagnosis was Endo of the bladder and was given oodles of Lupron. I wonder how many times THIS happens too? So now, due to the early menopause due to the unneccessary hyster and the oodles of Lupron (due to misdiagnosed Endo) I now have pre-osteoporosis. Hmmm...I think we do need to pressure the medical associates BIG TIME.

[Babs RN]

Amy,
I became a poster child for Lupron. The sad part with me is that I had gone off the Depo Provera to TTC again and started having pain. Since I had been diagnosed with endo before, no one even looked at my bladder as option and went straight for the hysterectomy option. After recovering, I had kidney and bladder pain that were "multiple kidney stones" and never investigated further. To think I could have safely given Lindsey a sibling....AARGH! :cussing: I have also found that if you complain(at least at our current, soon to be former post)as a spouse with substandard medical care, they label you as a trouble maker immediately. Would be glad to be a part of this if it helps one person not be operated on without a good reason.

Hugs,
Barb :grouphug:

[gypsyjoy]

I, for one am really happpy that I had my hystorectomy in 2002. My bladder, posterior wall and uterus had all prolapsed and I had not yet been DX'd with IC though I did have the symtoms already. My periods were unbelievable they were soooo heavy, I would wear a pad with a depends, just so I would not mess the motel room sheets....I traveled for a living back then. The cramps were from my knees to my waist and would last 4-5 days. Not worth it in my book. I was more than happy to say get it out of there.
JOY
I am really pleased with the courts decision for this woman!

[mare mare]

Our female organs are there for many reasons. They also support other organs. ( ex. bladder, rectum linning) My mother-in-law's rectum linning fell out her vagina. ( rectum prolaspe) mainly because there was nothing supporting it. She had a hysto many years ago. Back then they used hysto alot for birth control. She did not have cancer. Major surgery had to be done to build up some type of "foundation" to hold her rectum in place. During this surgery something happened to her bladder. As she was recovering, her bladder was leaking. (It had not leaked before surgery.) She had to go in for a Collagen treatment. This has helped so far. If it hadn't, she would have had to have major surgery to repair her bladder! On one of her visits to the Dr. with her, I told her Dr. that from my experience of the pain, agony and mental things she went through, it has taught me to "keep all my parts" if possible and make it through menopause! (even though I do fight with endomet.)
Hanging in there!!
Praying for an IC-Free day for all of us!!!!!!!!!!!!

:grouphug: mare mare

[Zookeeper]

I totally agree Jill: We need to do a story on this BIG TIME and put some pressure on various medical associations to prevent this from happening further.

I had a hysterectomy after about 3 years of them telling me it would help.I think they just got sick of seeing me all the time.I have 1 child out of 12 livivng(prego alot) and they just wanted me out of pain from what they thought was only endo. oh boy where they very wrong.My family is glad I did it but I totaly regret having it done now that I know better.On top of it my endo is worse now, they forget to tell you that it can still grow with out the uterus.I did argue that fact with a very stuburn doctor.I had him flabergasted and unable to finish sentences.LOL I WON MY CASE WITH HIM.

I wish all doctors would learn all there is to know about there own field...

Best of luck with this one cause it has happend so much. : :grouphug:

[pain 24/7]

I can also add my name to the list. Although my situation is a little different. I never had any problems with my bladder prior to having a hysterectomy. I had a hysterectomy ten years ago when I was only 29 years old. From the moment I awoke from the surgery I had terrible bladder pain. At the time I believed it was just the usual post operative surgery pain, however after weeks and weeks it became clear that something had gone wrong and my bladder was damaged and has caused me pain every moment since that time.
I haven't seen the gynecologist since a few months after the surgery. I often wonder if he ever thinks about my situation and wonders if I am still in pain. Since I have never heard from his office I am guessing he doesn't even remember my case.
I work in the healthcare field and I understand that things can happen and not everything always goes perfectly, but I know that in my office I definitely would have kept in contact with a patient who had such post operative problems.

[Silverfern]

I had a hysterectomy as I had a very large fibroid on a stalk and numerous smaller ones in my uterus. It was thought by my gyn that all my bladder urgency and frequency was being caused by the fibroids pressing on my bladder. That made sense to me at the time as my bladder problems seemed to be increasing along with the size of my fibroids. Had a hyst but right from the word go my bladder got worse. I can remember the third day after the surgery at the end of peeing it felt like someone was squeezing the heck out of my bladder....took my breath away. Never ever had that before. I put it down to the surgery, but over 4 years later I've still got the same problem along with lots of other symptoms. I often wonder whether my fibroids would have eventually shrunk if I had waited long enough (I was 18 months post menopause when I had surgery but they'd shown no sign of shrinking). I guess I'll never know the answer to that. The jury's still out for me as to whether I made a mistake having the surgery or not.

I take my hat off to that woman for taking the action she did.

[MakinIT]

Well Jill (and All)

My story is a twisty one that takes me to IC. In 1995, my second daughter was born, prematurely and I came very closely to death. We didn't do any tubal ligation at the time b/c I was worried if anything happened to kids we may want more in future or we want wore anyway. SOO...2years after, husband and I decided to do a permanent BC. He was absolutely not going get snipped so I had to go in and get tied, burned..whatever. Bout 6 months after that,I started pain in my lower right quadrant. I had a fever..rebound tenderness, etc...all kinds of things that point to appendicitis. so they did an emergency surgerey, found my appendix ok(but removed it) but my right ovary all swollen and the tissues around it and the burnt tubes inflammed (pus filled...nasty) . So after that, (which formed more scar tissue and I am a prolific scar tissue producer), within a year my periods got very, very rough and caused me to miss alot of work. Talked it over with my Ob/Gyn (same on who delivered my preemie and saved my life) and we sorta came to the same conclusion together..I wasn't going to have anymore kids...why stay in so much pain? So she removed, through my belly..not vaginally, my uterus and right ovary. (felt I was too young to have my left removed and be put into menopause.) When that surgery was over and I was recovering (2001) I started to have probs with my bladder. Underwent testing with a uro (complete grouch) and he said all was fine. I'm convinced, looking back, IC started mildly then.So...I went on with my life until spring of 2003 when I had been enduring daily mind splitting migraines for months, and left side cramps that made me hurt so bad I could hardly move. I went to the gyno, again, and she could feel my ovary, said it was huge and I went through the rough on that exam. Then, she me ultra sounded..the ovary was 9 com. The nurse called and said my surgury was schduled for the end of that week. The doc said She would only open me on my old hysto scar. When I awoke, I hurt so incredibly bad. The next day, while on morphine drip, she and her partner pulled the surgical wrap back to check the stitches and I saw the new scar. It went from hip to hip. I guess I said "How may Fu***ing hands were in there?" (according to my doc) When I was more coherant, she said the ovary had burst many times so there was a bunch of old blood, and she had to untangle the ovary, bladder, urethra , bowel , and all the arterioles and venuoles from each other, all mixed in the blood, and she said quote "I was very worred about harming the urethra, so i was extra cautious dissecting it from the mess, but wasnt so concerned about the bladder b/cause it's a simple muscle and can easily heal." "sigh" ...bout 4 weeks after those same pains started like in the prior surgery only much worse. This time, my gyno said "Go to a urologist now and start getting tested now, there is something going on."


And here I am.

[Amyinagony]

Amy,
I became a poster child for Lupron. The sad part with me is that I had gone off the Depo Provera to TTC again and started having pain. Since I had been diagnosed with endo before, no one even looked at my bladder as option and went straight for the hysterectomy option. After recovering, I had kidney and bladder pain that were "multiple kidney stones" and never investigated further. To think I could have safely given Lindsey a sibling....AARGH! :cussing: I have also found that if you complain(at least at our current, soon to be former post)as a spouse with substandard medical care, they label you as a trouble maker immediately. Would be glad to be a part of this if it helps one person not be operated on without a good reason.

Hugs,
Barb :grouphug:


Barb,
I did the Provera too, before the first 3 months of Lupron, which was given to me for suspected Endo before the hyster. No Endo (according to pathology reports from the hyster) Because of suspected Endo in the bladder, (when I continued to c/o pelvic pain after my hyster) I had 18 more monthly injections in a row. I had a total of 22 injections of Lupron. I think that I'm on the Poster with ya. It's a wonder that I have any bones at all left. And it was all a waste of time, (and money) because I didn't have Endo. Is that insane...or what?? In fact, when my "Endo" became out of control for my GYN, I was sent to an Endo specialist. It was that doctor who first said that he thinks I may have IC. I feel like a dope for not knowing the harm in all of this (Lupron) prior. I guess I was so despirate for help that I submitted to everything (of course also thinking the "doctors" knew what they were doing).
Do you get bone density tests done?

And, yes, I too was (sort of) labled a trouble maker because I did the 'doc hop'. Those doctors must all talk. One good thing that has come out of all that is, I've become much smarter (with knowing my rights as a pt) and much braver with doctor's crap, and I don't put up with it for one minute. Anyways...I do have a wonderful doctor treating my IC and I just love her and her entire staff. Thank God!! :)

[lilfox]

I had my hysterectomy in 2004 . pain is still with me every day . It's a full time job just trying to keep the pain at bay and trying to have some kinda life . Glad she won.

[MakinIT]

Hmm...Don't know what Lupron is...guess I'll look it up when I'm done. My moods have been odd, as has my health, but then, such is my life for the past 3 years. A new community center opened near my house (like 1/4 mile) and it is gorgeous...they have an indoor track (walk around 13 x = mile....thank goodness you can look down and watch the rock wall crawlers and basketball games. So Yesterday I went and walked 8 times around and stopped to ride a recumbent bike for 3 minutes (pant, pant) rolled on a ball...then went to an elliptical trainer for about 4 minutes. then I just experimented with the equipment (weight lifting). I used to be in such good shape...but I digress.. I told myself I won't look back, onlyforward. (Still, I could cruise on an elliptical for 40 minutes and be jammin') So, when done, I left, backed out of my parking spot, and an elderly woman came flying past me (believe me, there was a ton of pedestrian traffic b/c of some conference so I was cautious) I looked back and forth for a bit then started to back out and I bumped this ladie's 1980's ish Honda Accord. I get out and look (No damage to my truck) and she tries blaming a rust stain on my bump. A rust stain. Even in the PNW it takes longer than 30 seconds to oxidize a spot where paint is gone. I did, maybe, break, the plastic over the wheel well. (the trim) I said something about the pedestrians and the pressure of the other drivers wanting to park making you drive quick and she got very defensive. Gez....did I hit a nerve. Oh well. I don't want her to file a claim. I told her to call me first. I'll pay for it. (And like, this is just one more thing my husband needs to use to say I shouldn't drive) I have already agreed not to drive after noon unless it is within a mile of my home (since they changed my meds to methedone) I got very frustrated last nightt in bed with my husband...(no ..stop being naughty) we were just talking and I was saying my kids have no respect for me, I don't work, my husband is frustrated with me, and I fall asleep at the drop of a hat. And I don't have any fun. He is taking my oldest to Italy in 2 weeks for her 16th birthday. I am still stinging from that but I know damn good and well I couldn't travel that long. He promised to take me to Scotland in the Fall for a conference he is speaking at. We go over the North Pole so it is only a 4-5 hour flight and the travel agents have already said icould travel first class, and likely slip Roger in if it wasn't full...When he comes back from Itally he is taking me to Cirque De Soleil "Vardekei" (I've seen Dralion and the first one that came through Portland...I can't remember what it was called) My husband knows I love those shows...they are are increadible...exspensive as hell...he got us the center front row seats so I am predicting something embarrassing (you know, force audience participaticing!). I better lose some more wieght!!!

OKAY: SO HERE IS MY QUESTION for you all. the meds I've been on are of course, constipaters. (sounds like a bad rock band) . I've had some probs with Hemroids...(I love telling people I've never met my secrets...) So, yesterday I was at the gym and was going to the bathroom. Remember I've had a hysterecetomy....anyway...as I was doing my thing, cleaning up, I thought I felt liquid and I pulled my hand up and it was covered in bright red blood. Like I was stabbed. But there was no pain. Now, when I've had "fissures" in the past, it hurt like heck and there was some blood, but this was a bunch of blood and it took about 5 minutes to stop. There was no "BM" at all just blood. (after the initial minute or two) Have any of you experienced this with constipation?I know, I know...I need to call my doc...I reeeeeallly wasn't into the exam but I know I should be looked at. Part of my "post surgical""problems include alot of adhesions and there is one spot on the lower left side of my intestines that just hurts like hell sometimes. (They all shrug...MD's)

Thanks so much

Tracey

[sami4]

Reading through all of your stories makes me think about how much hormonal imbalances play a role in female pathology. Sometimes like the woman with the fibroids and heavy bleeding hysto is an answer, at least to the bleeding problem.
And no, they dont always go away after menopause, mine havent and I am still spotting almost every day from them. Most gyno dont seem to have a clue about hormones, if it isnt progesterone or estrogen they glaze over. I also wonder about the older surgical techniques? Today, the laproscopic, cervical sparing hysto is the coming thing as it leaves a lot of the nerves and support tissue in tact, and is least traumatic to the bladder and lower UT. The abdominal hysto left a lot of organs exposed and vulnerable to all sorts of problems during the surgery. Also not replacing estradiol at sufficient levels after a hysto lead to major bladder and other problems. Dr. Elizabeth Viett says a hormone blood level of 100-130 is critical for menopausal women or hysto women to keep bladder and nerve endings lubricated. Any measures that block estrogen will cause problems with bladder such as Lupron, or many of the pregnancy inducing treatments with high progesterone. Hysto is the ultimate estrogen removal treatment unless estrogen is given immediately and in adequate dose. I also know women who feel a hysto with estrogen after changed their life for the better????
This is just my two cents worth of musing.
Sammie

[saptree]

I had pelvic pain and had laparoscopy to see if I had endo. Nope, clean. Sent to a GI specialist, had tons of tests- no problems there. Went back to the gyn and he gave me Lupron for my invisible endo. I ended up on it for 9 months, even though I switched gyns after the first one sent me home with prozac- saying that it was a great painkiller (I gave that man a lecture he'll never forget.) I lost my bone density- ended up with osteopenia and on Fosamax at the age of 25. I didn't figure out I had IC until I was complaining about having another of numerous ultrasounds at work. One of my employees heard me and gave me an article about IC and the phone number of her uro. That was the best thing that ever happened to me! Then I moved from that area to another. Found a new uro and a gyn who had heard of IC! Wow! So yeah, been through hell finding IC, but still able to have children- I have one. My biggest problem was how my symptoms would fluctuate with my menstrual cycle. Always have and still do.
I feel horrable for those of you have lost your ability to have children. Its truly robbery!
Sherry

[icnmgrjill]

Tracey... I think that that blood flow is definitely a concern... sounds like you ruptured a hemorrhoid or something. But, if you were doing "your thing" but didn't have a bowel movement... that makes me wonder too if something else is going on. God knows, between hemorrhoids and adhesions, it's a miracle we can go to the bathroom without crying. Please let us know what the doc says!

Jill :)

[sister]

Good for her!

I don't know why Drs are always performing such unnecessary surgeries. :( It is incredibly sad.

I am one of the lucky ones. I had been living with pain for several years I went to a new gyno (Dr Hodes the Women's Health Clinic in Overland Park, Kansas) he just talked to me a bit, and then had me fill out one of those "pee-ing issues" questionares. He then said "Blah IC blah google it...blah specialist"

So I googled it. I got my Dr from this site and he scheduled a hydro distension and that was that. IC.

My road was incredibly hard, but I cannot imagine what many of you have gone through.

I just want to choke every single one of those Drs. :rant:

[MakinIT]

Quotes:fr Kadi
The first thing he said when I told him I had IC was that I should have a complete hysterectomy. I asked why, he said that it would heal my bladder. I asked him how removing other organs could heal an inflamed one and his next question was "Why do you want useless organs if you are not going to bear children?" I got up, told him he was not the doctor for me, and walked out. enquote


(Idon't know how to make that quote thing work) This is from waaay back in Feb of this year...Kadi...yah got great kuhanas...:smile tee I think we need a Kahunas (for females) page. (or brave men) It just teaches new and young patients that doctors are not God...unfortunately, we don't know by looking at their license if they were a 2.0 med student or a 4.0 student. I feel fortunate. My doctors have figured our that I read up on stuff I don't know that they tell me, or I question stuff they tell me that I do know about...(ok...so they prob groan about me behind my back..ha, ha, ha,) seriously, I feel comfortable calling them and joking with them. One doctor kept my health plan so he could keep me (he makes alot of money with me.....note cynicism) My doctors are a Godsend, but they are not god. I sat with my main doc and filled out my semi annual Attending physician form for my private LTD form because he wanted to get it done, and knew that I had the info...he agreed with all the stuff I said, and he actually wrote things more than I would have then he sealed it up and sent it off. I just don't know WHY other docs can't do that (that is, treat their adult patients like adults...) Really, it's not rocket science to explain how your organs work, what the hormone effect is and what medication may or may not do. (rather than just telling you what they want to do.)

I hate being sick.:rant:

[Tammy321]

I was also told i needed a hysterectomy. I almost went through with it, and at the last few days decided to get a second opinion. im glad i did cause my fermal organs were normal. I had a very large adhesion removed that relieved some of my pain. But still had the bladder pain, but at this time didn't know exactly where the pain was coming from.

[Moonheart]

Me too. Uterus was perfectly normal. No endo in the uterus, only behind it. It turns out I probably had IC the whole time and nobody explored it.

This is going to be a landmark case.

[MakinIT]

wow...amazing...My endometriosis is all over my pelvis...and was in my Uterus.....I still have that to torment me. My daughter has it too. (Endo) She can feel horrible pain between her back and bowel with every period (post egg plop, until her period ends) And she is miserable.

Take care

[lorihoss]

I had a hysterectomy in May of this past year. I am really glad that I did. I was having major pain, heavy bleeding, and clots. Back in 1999, I had a myomectomy to remove a soccer size benign tumor. This time when the doctor started talking to me about my options, I told him take it out. I was sick of dealing with it all and wanted it out. Boy was I right. When he got in to see if he could leave the ovaries, everything was connected together as well as being connected to my other organs. The hysterectomy was the best thing in my life. I feel ten times better even though I am now dx with IC. I can't imangine dealing with the pain of a period and this like I was last spring. It had gotten to the point where I wasn't able to walk during the week of my period. My doctor is a wonderful gyno who specializes in women's diseases and is truly gifted in what he does. I found him because a friend of mine had him when she was fifeteen and he refused to let the ER doc give her a hysterectomy then. He helped her keep her organs until she was 29, which enabled her to have one child. So, I tell all my friends if you need a second opionion, call Dr. Dick Glick at the Broken Arrow Women's Clinic in Broken Arrow, Oklahoma. He is truly wonderful!

[Curlyfries]

Started period when I was 10 and was terribly sick with every one. I had huge cysts removed from my ovaries several times and finally decided to to get hysterectomy. When I got off the bed for the first time after surgery, I felt my bladder fall instantly. Had bladder and bowel lift in 1996 but it wasn't done properly and all fell down again and haven't been able to get a doc to fix it right ever since. Praying for all.:angel: :smile tee :angel:

[MakinIT]

It just blows me away how we walk such similar paths:lorihoss, my gyn described my "second hysto" (oompherectomy of remaining ovary) as hell. Everything was glued together because my ovary had burst sooo many times. Plus adhesions,plus endo...Curly fries...I'm sorry things are so bad for you. i have a friend who had a bladder lift and says she can feel her bladder in her vagina (and another friend whose bladder lift worked perfectly) I know there has to be a reason for me to be enduring this, I just wish I could figure it out because I feel like I did much more good in the world, teaching in special education, than accomplishing one chore perday and being groggy from pain meds. I was actually cracking some funny jokes with the family tonight on our way to a movie tonight, and my 11 year said "Mom, you scare me when you are funny..." I didn't know how to take that....I asked her if my jokes were bad and she no they were very funny but she is not used to me making jokes. (My older daughter remembers me better the way I was before all the meds and pain, forgetfulness and frustration. ) My husband IS funny when he isn't gloomy over something but he is always silly.

[curlette]

I, too, had severe endometreitis and was hemmohaging so severely that they had me on steroids for almost a year before they removed all my female organs. The hysterectomy itself was botched right from the start and I ended up back in Emergency because the surgeon had stapled my colon to the neck of my Bladder, and they then had to remove about 12 feet of my colon to reconnect everything properly again. I have had constant problems with urinary tract infections coming more and more frequently, until I finally ended up in hospital with a serious kidney infection, where they almost killed me again, with the IV antibiotics that they used on me. I have been diagnosed with IC now, but feel that I am being used as a Guinea Pig in a clinical study, rather than a patient. The medications I am on isn't really helping me, at all, and I continue to have recurring urinary infections inspite of the med and adding conjugated estrogens, now vaginally as well as orally.My sex life with my husband is going to hell and nobody seems to understand very much about this so-called syndrome. It's really frustrating and I don't see any light at the end of the tunnel yet!

[MakinIT]

Hi Colette

Hey your symptoms seem to be so "routine" in some ways but the yeast is a big, big alarm to me that you have obviously lost the yeast killing organisms in your disgestive/tummy/ whatever tract...yeast inthe mouth is just not normal for anyone beyond I think 6 wks of age...

Can you see an alternative therapist under the Canadian plan? I think you need a wholistic over the the body looksee by a naturalpath...someone trained in eastern medicine who won't just look at your kidneys, or female organs, or mouth thrush....There is definately a need to see how it is all combined and you can have the best western docs (and I really like mine) but they can frustrate the heck out of you when they don't talk to each other and compare notes re: how one system affects the other.

as an aside, my sister in law lives in Chase, B.C. (I've actually visited up there so often I've had to see the doc in the town, and the kids have had to as well with ear infections...even w/o Canadian Insurance, the emergency bills were so reasonable...and the kids always get a "lolly") The town is about 30 minutes east of Kamloops (Winter, 45 mins ha, ha) Hopefully, you live closer to Vancouver and can see more docs there who practice alternate medicine. I used to visit a practioner of Eastern Medicine when my migraines were horrid. She was very helpful.

[S.MARLER1997]

Hi I Was Dxd With Pelvic Pain Yesterday Dxd With Ic In 98 U Seem To Be Doing Ok How Do U Stay So Strong Would Like 2 Talk 2 U More On Line If U Want

[MakinIT]

uh...S.Marler: to whom are you referring? : ) you can send private messages to the person...go to you want to talk to, (like me..makinit) click on my name in the message (should be blue) it will come up with options. One of the options is send private message. OR go up to your user CP (on the bar towards the top and a bunch of options come down including private messages) Anyway...that's how you do it ....kinda cool, you can talk privately with anyone on the site.

[TaysProudMama]

I have uterus problems,along with PCOS, so I have been told many,many times it was all related to my uterus or ovaries when I knew darn well it was my bladder..I am just so thankful that I found such a wonderful doctor so early.

[kfeldman]

Thank you everyone! I would really love to hear from other patients who were also told to have hysterectomies. We need to do a story on this BIG TIME and put some pressure on various medical associations to prevent this from happening further.

Jill

Hi, My name is Kim Feldman and I am 33 years old. I had a laporascopic/vaginally assisted hysterectomy 2 years ago for endo and have done nothing but suffer major pain from IC and my bladder since then.

6 months after this procedure my bladder dropped into the uterine space and I had to have a bladder sling right away. Too much info to share about this. Email me if possible directly kimfeldman@verizon.net.

Thanks for all the support.

Kim

[MelissaT]

I had a hysterectomy for pelvic pain in 2003. I had been told for about 10 years that if I wanted the pain to stop i would have to have the hysterectomy. One dr. even told me when I got tired of the pain that I would be back to see her , she never even discussed anything else. I talked to her, including the exam, for about 15 minutes. I never went back to her. The pain got so bad that I went to another gyn and he did a abd. hyst. and left my left ovary. The pain seemed to get worse. I finally was sent to a gyn that specialized in chronic pelvic pain. My next appointment was to a psycharists. I had been told so many times that there wasn't anything wrong with me, I thought if there isn't anything wrong physically then it has to be mental. I talked to the nwy gyn for about 5 minutes when he told me that he was sure that I had IC. He asked me how many doctors I had been to before I saw him. I couldn''t answer there had been so many. He sent me to a nurse practitioner that deals only with ic. I cancelled my psycharist appointment. I feel like I am just rambling. I am so glad that I found this site. I read the posts and cry. It feels like I have finally found people who undersstand the pain that I feel. Thank you all soooo much.
Melissa

[kfeldman]

MelissaT,

I agree 100%! I felt like a crazy woman for the longest time. Now I read the stories and know. My docs NOW are great! It also took me a long time to get the right help.

Currently, I take Pyridium everyday for the burning & frequency. My pain has gotten better with an interstim implant that I just got 2 weeks ago.

I am only 33, I am a wife, mother of 3 and have a job that I have had to miss for 5 months cause things just got too bad! Hopefully, in a few more weeks of recovery I will be back at work. I need to get a life! It sucks staying home sick!

Kim

[tulipgirl]

Hello
I no what you mean about feeling like a gunni pig, and you almost feel like you are crazy or something because everyone says they can't find anything.I had a hysterectomy too before I was allowed to have any kids, I had endometriosis so they took everything out including my cervix and appendix but I also kept getting reoccuring bladder infections so I thought until the medicine did not help and I was crazy with pain. I just got told that I had IC a couple weeks ago and am on 3 medicines Elmiron 100mg 3x a day and Estrace cream because I was low on hormones everynite for 2 weeks and then 2x a week after that, and Oxybutynin 5mg 3x a day I think this is to help me not pee so much but I still do and I still get up 2 - 3 times at nite still what a pain, I feel like I never get into a deep sleep. I hope you feel better soon, Maybe you should go back to your doctor and have them try new medication for you, it is terrible to be in such pain.
Take care and God Bless
Connie

[ICLori]

My urogyn also recommended a hysterectomy to me, even though he knew my diagnosis was IC and that I wasn't having any problems related to the uterus at all.

Blessings,
Lori

[MelissaT]

The only thing I gained from the hysto was no periods. However, I still cramp and have mood swings and bloating.
I could have done without all the pain of having the hysto. They also done a bladder tack and a tvt at the same time.
I was in a lot of pain. I think it would have been alot better without the hyst. that I didn't need. I had a very hard time finding pain meds. I had to stay in the hospital an extra day because of it. 9 days later I had to go back into surgery to loosen my tvt.
I couldn't pee on my own. I had to keep the cath in for the whole 9 days. It did save some pain from not having to get up to pee. But it was very uncomfortable, especially when I had company. I know I am going on and on. Since I have found this site I have talked about my problems more than I ever had. Sorry! Thanke for listening.

MelissaT

[stac7_8]

I also had a hysterectomy, just this past December 06. I have had an issue with cysts my whole life and I also had to have a Tumor removed along with my right ovary at the age of 27. My hysterectomy was preformed @ the age of 30.

I have been having the SAME pain that I have always had. It has only gotten worse.

Do I think I truly needed the hysterectomy...at the time yes, now No I don't. I wish I would of had the PST done first, had I knowen about IC.

I truly believe that since my female issues were backed each time by an ultrasound that is what they were "hooked" on. I never once had a doctor say hey stacey it could be this.....

[MakinIT]

You know...I have to wonder if these people actually compile some stats (IE:post hysterectomy complications) to deal with decisions, or are we just a very small minority of women unfortunate enough to get messed up by the complications? (I know, personally, 4 other women with hystos...of those, 1 had a bladder prolapse and severe potty problems as she called them. I don't know if she had IC or the prolapse surgery fixed it? another got adhesions almost immediately..she happened to have the same surgeon as I, and I will stand by this doc; the woman wanted to blame her adhesions and subsequent other complications..bowel obstruction, mild IC...on the surgeon and sue her but I reminded her of the fact you go into surgery knowing some issues could happen. A surgeon can't control adhesions, for Pete's sake. ) The other 2 women had normal happy hystos....promised all the period free moments and are content. hell, they were the ones who encouraged me, after my doc told me to think on it,


I honestly don't know the answer. It seems a total crapshoot. I'm afraid for my eldest. She has horrid cramps, down into her rectum...has since her periods started. Doc has her on the "once every 3 months" BC to ease her periods and stop the endometrial tissue growth. Caitlin is scared to death she won't be able to have babies. Funny, she isn't sexual and she had a fit when she had to start taking them "Mom..it makes me look like a ......... " I asked her who had to know.

For those of you who found this site and are finding solace in a place to talk, I'm happy for you. This is a nice and caring bunch of people. you will get more info out of these folks than from the docs, but as the disclaimers say, no one is a doc. We are here to empathize with problems, laugh at issues that come up (that no one else would understand) , to dole our own advice, and occassionally get off the path of IC and talk about stuff we arent supposed to talk about (politics, religion, ect.....) and rightfully find our opinions removed. (I have a "boca grande" and tend to get going sometimes) We also are here to help with relationships. almost all of us have struggled or are struggling with someone in their life due to this cursed disease.

good luck to all: Tracey

[pj77]

I'm a little late adding to this topic, but I just found it and read with great interest. I am so grateful for this site and to be aware of situations like this.
I can't believe how many people this has happened to.


I never had the hystercotomy thing suggested, but like someone else above wrote, I did have a male gyno suggest my symptoms would go into remission If I was pregnant/had a child. The way he said it made it sound like that was the cure.

I also had a female urologist, "pushing" interstim. I didn't even have a frequency issue, my IC problem was always pain, burning, pressure-and thanks to this site I knew that interstim is mainly to help with frequency issues, which I wasn't having a real issue with. This same doc, wanted to also start looking into possible exploratory for endo, but I had none of the typical endo symptoms that are so common and listed.

Anyway I'm glad I did my own research and I am much more informed thanks to places and people like here.

[saptree]

Oh, I had exploratory surgery for endo, had none, and was treated for it anyhow with Lupron for 9 months. Ended up on Fosamax for low bone density, all before I was even 25 yrs old. I'm one of the lucky women who get to go through menopause twice. I was also told to get pregnant, I think the theory is that it calms down endo. But if one actually had endo, getting pregnant isn't an easy thing to do. Luckly all the experimantal treaments didn't impare my fertility, I'm due in 4 weeks with my second boy. I do have PCOS, which I can't believe the other two gynos didn't notice. My IC discovery came through a coworker who heard me complaining about my symptoms and handed me an article about IC and wrote her uro's phone number on the top. Thank goodness, or I would still be suffering to this day (or in the padded room.)
Its a wild road we all go down!