How many others with endometriosis on/in bladder?

[anewday]

I wonder sometimes if this is the "cause" of my IC. My IC symptoms began right around age 12- after I started my period. I had definite endo symptoms at age 14 and my doctor said it looked like I had endo for years but for some reason it had just gotten really aggressive.


I basically had endo everywhere- my ovaries, tubes (it twisted one ovary around a tube), bowels, and according to my doctor it had "glued" my bladder to my abdominal wall.

I live in fear that my endo will come back despite the hysterectomy. My doctor said there was a chance since it was so severe and had grown everywhere.

I am curious to know how many of us with IC have or did suffer from endo.

[hdb1982]

I have suspected endo but have yet find a dr. who woll open me up to see if/how bad it is. Every doc says my pain is all ic. I haven't given up. I am doing what I call the "doctor bounce" I will bounce from one to another until I find one that satisfies what I am looking for.

[anewday]

I am sorry, it is so hard to get an endo diagnoses. It took me months to convince my doc to do it, and he said the main reason he did it was to remove the cysts on my ovaries and that I might have a "very small" amount of endo which would be normal for a woman my age. When he came out of surgery, he told my mom and husband that he should have listened to me and that I had to be in a large amount of pain from the endo. It was so bad he couldn't even remove it all and 6 months later when I had my hysterectomy he said it had grown back worse than the 1st time.

I finally got him to listen to me when I brought a huge list of my symptoms into my visit. I would always forget symptoms or be to embarassed to talk about some, so I just handed the list to the nurse to give to him.

[leelee88]

I had suspected endo since I was a teenager and hurt so bad around my period, to the point I would be sick in bed with and ice pack for 2 days. It was confirmed 5 years ago when I had exploratory sugery because I was doubled over in pain, thats when they also discovered I had appendicitis and removed my apendixs.

[GriffsMommy]

I had the diagnois of endo before I got the IC diagnois. I was one who actually had a mass of endo grow through my bladder wall. It showed up on an ultrasound they were doing because of my pelvic pain and I was referred to a uro who removed it from my bladder. He thought from what he saw I had bladder cancer which was terrifying being I was only 23 I think. I think my endo and IC are def related. My current dr thinks I've always had IC but I'm sure it didn't help my bladder that endo grew through the wall and needed surgery on it to get rid of the endo.

[gigisgirl]

When I had my hysterectomy 4 yrs ago they found endometriomias or chocolate cysts throughout my ovaries and tubes. Once you have a hysterectomy is there a way for endo to come back?? I didn't think there was but someone above said it may be able to.

[anewday]

When I had my hysterectomy 4 yrs ago they found endometriomias or chocolate cysts throughout my ovaries and tubes. Once you have a hysterectomy is there a way for endo to come back?? I didn't think there was but someone above said it may be able to.


Yes it can grow back, especially if it grew on places other than what was removed during a hysterectomy. Endo feeds off of hormones, natural or synthetic. He removed both of my ovaries/tubes as well, but I had to wait 5 weeks to start my hormones- he said if he left any microscopic bits behind (especially on the bowel or bladder) that the hormones could make it grow back.

When I had my 1st surgery, they did an ablation and I didn't even have periods (no spotting, nothing) and even so they found more endo 6 months later during the hysterectomy than had been there the first time.

[GriffsMommy]

Yup, Jen is right. My mother had a hysto for endo about 10 years ago and they wanted even longer than 5 weeks before they would let her start on hormone replacement. She actually had her endo grow around part of her bowel and cut off blood flow. They had to take out the dead part of her bowel and section it back together. They wanted to make sure that none would grow back afterwards. I know she did the hormones for awhile after she was aloud but then decided it wasn't worth the possible risks and stopped the hormones. That is the one thing that scares me about a hysto, as I think I may need one in the future that it will grow back after it is all removed. Scary stuff I tell you.

[ihurttoo]

I had a total hyster 3 yrs ago for endo and adhesions, and my Dr also said it could come back. (He also said it feeds on hormones.) I DO take Estrogen now, (Estrodial/Estrogel), and have ever since my hyster. (I am a crazy person when I miss a dose!)

I also had endo on and in my bladder and colon. (It was even in the lower part of my back!) So, I definately share your fears about it returning! Worse than it's return is the fact that after you have a hyster, how would you know if it came back or not? I mean, it COULD be the cause of alot of my pelvic pain now, but what Dr. is going to go in THAT often to check and clean me out? So, who knows?!!!


I doubt I'll ever know the total cause of my IC or the pain. I mean it could be the Endo, adhesions, getting countless UTIs every year, all the sodas I guzzled non stop all day for years, all the cigarettes I smoked, hormones (and the surge of them during pregnancy, since that's when I started having MAJOR problems with IC and right after it), or maybe it is my Lupus that attacked the bladder! I mean really, who could say WHAT caused mine!! There's just too many possiblities for me and things they could choose from to blame!

[anewday]

I had a total hyster 3 yrs ago for endo and adhesions, and my Dr also said it could come back. (He also said it feeds on hormones.) I DO take Estrogen now, (Estrodial/Estrogel), and have ever since my hyster. (I am a crazy person when I miss a dose!)

I also had endo on and in my bladder and colon. (It was even in the lower part of my back!) So, I definately share your fears about it returning! Worse than it's return is the fact that after you have a hyster, how would you know if it came back or not? I mean, it COULD be the cause of alot of my pelvic pain now, but what Dr. is going to go in THAT often to check and clean me out? So, who knows?!!!


I doubt I'll ever know the total cause of my IC or the pain. I mean it could be the Endo, adhesions, getting countless UTIs every year, all the sodas I guzzled non stop all day for years, all the cigarettes I smoked, hormones (and the surge of them during pregnancy, since that's when I started having MAJOR problems with IC and right after it), or maybe it is my Lupus that attacked the bladder! I mean really, who could say WHAT caused mine!! There's just too many possiblities for me and things they could choose from to blame!

I feel the exact same way! If I am fatigued it's like...hmm..is it thyroid dose too low, hormones, anemia, Lupus, or am I just plain sick?!

My jaw kept hurting and I assumed it was TMJ until I went to the dentist and he said he thinks my Lupus is attacking my jaw. I didn't even know it could do that.

[ihurttoo]

I feel the exact same way! If I am fatigued it's like...hmm..is it thyroid dose too low, hormones, anemia, Lupus, or am I just plain sick?!

My jaw kept hurting and I assumed it was TMJ until I went to the dentist and he said he thinks my Lupus is attacking my jaw. I didn't even know it could do that.

I havent had it go to my jaw yet, but it CAN go anywhere! (That's what's so scary!) With me, it usually goes to my weakest spot, (my bladder), but has also done some serious numbers to my lungs (plurisy), heart (infected lining), mouth and nose (ulcers all in my mouth, on my tongue and under it, on my throat, (making it hard to eat or swallow), my nose, (in my nasal passages) etc. I even had ulcers inside my eardrum once!! (Now THAT was one of the worst curses yet!) Then, my eyes have been attacked (thought I had some new strain of incurable pinkeye for 2 months that was just unresponsive to the antibiotic eye drops! And THAT'S just the places I KNOW about cause I could see it, and had the Drs check for Lupus activity. (But, it always takes ME forver to realize that's what it is, and THEN, it takes me forever to get my Drs. to at least believe it is possible before they will check my ANAs and do other Lupus tests to check my activity~ GRRRRR!!!! I hate Lupus, I hate Drs, well, heck...I hate everything today! (All the above has happened in the last month or so!)

Hope you are doing okay and havent had any bad flares lately. It IS scary when it happens, and worst of all (or scariest of all, is when no one knows what's wrong with you or how to fix it!) (Well, actually the SCARIEST is when they just quit looking and tell ya to come back in a few weeks if you arent any better and then when you do, they tell ya it doesnt "look like anything to worry about, and come back in ANOTHER 2 weeks if you arent better!" (This is after you have been this way for 2-1/2 mo already!

I dont know about you, but I remember being THRILLED when I got my Lupus d/x! I really was b/c I thought, "At least NOW when I am sick and go to the Dr. they will take my problem SERIOUS! CAuse everyone knows ya dont mess around with Lupus!!!" Well, apparantly not EVERYONE got that memo! (Because they dont treat you any more seriously with Lupus than they did before! At least they dont with me!) I STILL have to suffer for MONTHS before they will put me on the right med! (See now why "I hate Lupus, I hate Drs. and I hate everything today?" I sure hope that your story is different than mine THERE! :pray: (Though somehow I doubt it will be! From talking to other Lupus patients here and others who havent been d/xed yet but have many signs/symptoms PLUS +ANAs, they have the same trouble I do!)

AGain though, I DO hope you;ve had better luck!

Many hugs,
Amy

[anewday]

I have a really, really good rhuematologist. Actually, I got diagnosed with Lupus because of my achy joints and my gp was bright enough to realize a 15 year old shouldn't have achy joints and off we went to have lab work done. My ANA and anti-DNA levels were through the roof, and combined with my unexplained fatigue, soreness, Raynaud's and rosy cheeks I got diagnosed pretty quickly.

Now this IC crap is a whole different story. I am convinced I have had it since I was 12 and they just now have figured out what it is.

[mcdoll]

About the endo, I used to think that was probably the cause of my symptoms. It runs in my family and is such a common disease. When I saw the symptoms could mimic ic (when it's on your bladder), I thought that was it for sure. The did pelvic exams and an ultrasound and nothing came up, so now they're telling me that's not it, but everywhere I've read it seems like they need a laparoscopy to determine that for sure. Then again, even though my periods have gotten much worse since my ic symptoms started, it's only the first day that's truly horrible (I got my period when I was in the hospital and it hurt so bad they sent me to have x-rays to make sure I didn't have ovarian cysts). So I guess that's not very consistent with endo. It's true that endo can come back, but usually medication helps. Also most people feel relief after menopause (I know my mom did. She had most of her ovaries removed because of endo which went diagnosed for over a decade, but she still had problems until she stopped getting her period). Surgery is a pain, but it seems to be one of the most effective treatments for painful endo, even though it may have to be repeated. Also, the chances of feeling better for longer have a lot to do with how thouroughly the surgeon removed the endo. If they leave any it comes back faster. Some doctors will prescribe you birth control that you take for 2 months before getting your period. Also, there is a way they can simulate menopause with medications which helps some. Most people eventually need to be operated on again, but they usually have significant pain relief for a few years before that. I hope you're doing well and that things aren't too bad right now.