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Diagnosed with Interstitial Cystitis after Hysterectomy
yvetteb34 posted:
HI, I am 34 years old and I had a hysterectomy last July 2011 and the minute I woke up from surgery I immediately had bladder pain. When I informed the nurse her response was "it's normal due to the catheter". Well it wasn't 7 months later I am now diagnosed with Intersitital Cystitis, I NEVER had any bladder problems prior to my surgery. I would like to know if there is anyone else out there with similar issues. I'm contemplating in seeking legal advise.

Thank you
tierneyn responded:
I am sorry you are suffering, and I understand how difficult and frustrating IC can be because I have had it for eight years now. I would check out the IC Network (, specifically the ICN's forum ( to see if anyone else has had a similar experience; I am sure some IC patients have, but I am not sure if other ICers have taken legal action. However, it may be difficult to get the justice you deserve because we still do not know the exact cause of IC. Do you mind me asking why you had the hysterectomy? Best wishes.
Kari_Mill responded:
Hi, Yvette,
I have interstitial cystitis too and understand the pain you're in about the condition.
I'm developing a new service to treat IC.
I'm not ready to begin offering the program yet, but I'm reaching out to women like me to ask them if I could interview them about what they need in term of support so I can develop better programs to serve them.
Would you be willing to talk to me about your experiences with IC on a 15 minute phone call?
If so, please email me at
Good luck!
Kari Miller
notalone responded:
Hi, I am 50 years old and also I had a Hysterectomy, because my doctor found out that I had endometriosis, and now the same like you, Interstitial Cystitis, and I NEVER had any bladder problems. My sister's friend is about 27 years old, the same endometriosis and now she have bladder problems the same with my sister co-worker. WHAT IS GOING ON?? I'm tired of being in pain and changing doctors expecting one to tell me something different. I need to know like you, if anyone else have or had similar issues too!!. This is too wierd.
yvetteb34 replied to notalone's response:

Hi, yes I agree something is going on here. I've tried obtaining an attorney for a possible law suit but unfortunately two have turned me down as there isn't much info on IC. I think we need to unite and do something about it.

The pain is horrible and not to mention ongoing doctor visits and medication has become so expensive. Please anyone who has had luck finding more info on the causes or seeking legal advise please reply.
jomikemeehan replied to Kari_Mill's response:
hi, my name is jo, i am 35 years old and was diagnosed with ic about a year ago and recently had a complete hysto because of endo. i am interested in learning more about programs you are offering. my email is i look forward to hearing from you.
An_253476 responded:
Hi, I am 42 years old and I have had a hysterectomy as well and have experience the same exact problems. I too was diagnose with IC after the surgery. I did not want to remove my uterus because I wanted the chance to have another child. But my doctors convinced me otherwise and it took a while after 2 surgeries and nights of tears of not being able to have at lease one more child to accept that I just have to live with it. I was laying here thinking what if I was misdiagnose and others were too. So I started researching and found this posting. Has anyone been successful with legal help? Please let me know. This madness must stop.
yvetteb34 replied to An_253476's response:
Hi An_253476,

I have looked into a lawsuit and had no luck since they really don't know how IC starts. I wish you luck on this long journey. I would love if you keep me posted on your outcome.

Good luck,


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