Endometriosis or IC or both?

[skeetor]

Does anyone out there have endometriosis AND IC? If so, how was the endo. diagnosed? Laparoscopy? How was it treated? I've read that IC can often be mistaken for endo. This may be my situation so would like to hear from anyone with this issue. Thanks

Renee

[ICLori]

Hi, Renee, I have both endometriosis and IC. I was diagnosed with endometriosis several years before developing IC. It was treated and diagnosed basically with laproscopic surgery. I had a mass around my belly button that was protruding through my abdomen that could be palpated manually before even going into surgery, so they knew that they had to go in and see what it was, since it's not normal to have something poking out of your tummy like a finger.

Anyway, turned out it was a bunch of endometriosis, they surgically removed it. It came back a couple years later, they reoperated (this time removing my entire belly button) and it's been (knock on wood) gone for several years now.

Researchers are calling IC the "evil twin" of endometriosis because they occur so frequently together - I think the comorbidity rate is something like 80%!

Blessings,
Lori

[Tracey5399]

Hi renee,

I have both. The diagnosis came at different times and there is actual proof per my doctor's which 1 i got 1st.
Not all icer's have endo, but it is known to be associated more so in patients w/IC.
The only full proof way to know for sure is a lapraoscopy. My gyn was convinced i didn't have endo just IC she was very sceptical when i pushed for the surgery and when she went in and found it she herself was surprised.
As far as treatment i was told either Lupron shots or Birth control to try and slow the growth. I am not really sure if either treatment works because my only alternative is the pill which i have had no luck on not flaring on them.
My cousin had enod and had the lapraoscopy also about 15 years ago & she swears it hasn't come back, but she also hasn't had another lap. I am not really sure if she is correct.
I wish i could be more help, I am really sorry you have to even have to think of these things. I hope you seek the proper diagnosis soon.
In my own opinion id rather have the lap than the Hydro.
Best wishes,
Tracey

[trinklebell]

i have endometriosis, ic, and IBS. my mother had/has all these conditions, and she was/is on the lookout for me; so, when i started to have symptoms of these diseases at a very early age (i.e. painful periods, painful ovulation, and having a period every three weeks instead of four), my pediatician/ family friend, sent me to a specialist. the doctor was actually a specialist for those with ovarian and/or uteran cancer. he was very experienced and knowledgeable. he suspected i had endo or polycystic ovarian disease. so, before resorting to surgery, he wanted to treat me w/ birth control pills. he said if my symptoms got better on birth control pills then i wouldn't have to have surgery and i wouldn't have to have the label "endo patient" on my insurance, which would have made the rates go up considerably.

the pills helped control my pain mid-month during ovulation and also regulated my periods, but i still had extremely painful periods. after trying different/ stronger doses of birth control pills and pain medicines with no relief (i also had continual break-through bleeding), the doctor said he thought we should do a scope (a.k.a. labaroscopy???) to see for sure what was really going on down there (that was in May 2004, when i was 15). so, i was officially diagnosed with stage 1-quickly-moving-to-stage 2 endo. so, he put me on a b.c. pill that would cause me to only have four periods a year.

this is the part that makes me sad 'cause my good doctor was then forced into retirement b/c of his own medical problems. he sent me to another specialist who he thought was really good. however, this doctor did not believe that i was still having chronic pain and told me it was in my head and i should see a psychiatrist. (my mother was not too happy about this :tsk:) she (the doc) also told me that endo did not cause pain and i should stop taking my b.c. pills. so, against my mother's advice, i did as the doctor said and experienced a long period of time where i was in much pain and questioning my sanity. (did i really have pain, or was it just in my head? it was nerve wracking for all involved, i can assure you.) i don't know what i would've done without the loving hand of Jesus guiding me all the way.

by this time, my pediatrician had moved away and i had "graduated" to seeing a doctor that treated adults, whom our family was also friends w/. i told him about my problems, and, after poking my stomach around a little, he said he was 99.9% positive i had irritable bowel. (my stomach and gut always hurt and i had chronic diahhrea and constipation--w/ no in between-- but i thought it was just stress.) so, he gave me levbid and, after increasing the dose one time, it has worked wonders. i no longer have pain each and every time after i eat, though i do have still have chronic bloating, constipation/ diahhrea that is related to other problems. overall, the levbid has been great. anyway, the doctor also suggested that i see a new gynecologist that just moved to town (my previous specialists lived 1 1/2- 2 hours away.)

so, i went to her and guess what? she's great!!! before considering lasering out my endo, she gave me a zoladex shot (which is like lulpron) in may 2006. i was still having chronic pain after three months, so, 2-3 weeks ago, i had a laparoscopy, colonoscopy, and cystoscopy:loco: :cussing: . (i had the laparoscopy and colonoscopy one right after the other in the same day, and i had the cysto. a week later due to a bladder infection.) it turned out that my colon looked good, my endo was in remission thanks to the zoladex shot (hallelujah!:woohoo: ), but it was my bladder that has been causing all the pain-- i have severe ic.

so, now i'm taking a strong dose of b.c. pills that will only allow me to have 4 peroids a year; i started elmiron; and i will start distillations next month.

i hope at least some part of this post has helped you.

sincerely,
trinklebell

[irishnan3]

Skeetor:
I have both endo & IC. I have had Endo for 20 yrs. I know the only true way of diagnosing it is through a Laporscope. It can be very painful and it almost always comes back if you still have harmones coming from Ovaries or medication. Most people think that once they have surgery to clean it up it goes away. That part of it will go but new endo can grow and adhesions also form were the endo was removed. It has been a circle of problems for me. But I must say that after having it removed I did do well for 15 yrs. before the Endo started to bother me again. At this point the doctor thought that my bladder had been affected too. That is when they found the IC. It was a rollercoaster ride from there. I tried Lupron, Birth Control, Elmiron, and pain management and nothing helped me. But I hear that a lot of women have had good luck with Lupron & BC. Pain management is the road I'm on. Hopefully your is just starting and one of these meds. will help. Good Luck

[trinklebell]

patty-
have you tried a zoladex shot? i know it is similar but not exactly the same as lupron (is lupron a form of progesterin treatment?). i hope you'll find relief from your pain soon.

-trinklebell


*does anybody else have vericose veins in their bladder? has anybody found ways to help relax it?

*are frosted flakes safe to eat for ic patients?