endometriosis and urination problems

[jess4412]

Hi.  I was diagnosed with endometriosis on my ureter, bladder, and behind my uterus about six months ago.  I had a laparoscopy (also six months ago) and the doctor got rid of most of it, but was unable to get rid of what was on my ureter, because she said doing so could cause a blockage and cause me more problems.  I'm really suffering with frequency and urgency with urination.  I can't get through a class at school without having to pee, and i actually get scared that I might pee my pants if I wait longer than an hour.  I usually can't sleep through a night without getting up to pee (granted, some nights are better than others).  I'm getting really frustrated... I was willing to put up with this at first when my pain felt a lot better, but now it's really starting to bug me!! It's like embarassing how much I have to pee.  And it's always been this way...I was just always too focused on the pain before to care about the urination issues.  I don't know what to do :(  Is there anything that can be done for this?  I feel hopeless since my doctor said they can't get rid of the endo there without causing damage :(  Can anyone offer any advice?  Anyone in the same boat?

[achilles2]

I understand you urinary issues I have been there. (I also have IC) You might want to find another doctor. My doctor has removed endo off my ureter and I did not have any problems because he is one of the best-- he trains doctors world wide. If felt so much better after my surgery. If you can you might want to see if you can get into see this doctor:
http://www.althysterectomy.org/meet_dr_toaff.htm
Also contact the endo association to find a specialist near you if you cannot see Dr. Toaf:
http://www.endometriosisassn.org/

I hope this helps,
achilles2

[jess4412]

thanks for your response it's nice to know i'm not alone :)  i did actually have a cystoscopy because from the start thats what my doctor thought it was originally but apparently the inside of my bladder is in perfect condition.  I just can't understand how exactly endo on a ureter causes this extremely annoying problem!  there has to be something that can be done!!

[ticked]

You are like my twin!!! HAHA

I was diagnosed with Stage IV endo 4yrs ago. I had a Presacral Neurectomy done as well and I was covered all over just like you.

However I was told everything was removed as he is one of the top surgeons in canada and he is very skilled with the bladder, bowels etc.

Anyhow since then I still have these same issues. I had a cystoscopy done last November to see if I have interstitial cystitis which goes hand in hand with Endo. I was told there was no inflammation inside the bladder but I still think that is what I have.  I was told that it is still posisble to have it without visual inflammation.

I go back to see my surgeon again in November and will be bringing this up again as well as its either the Endo again or IC.  

I am trying to attach a link but my computer is slower than molasses so maybe just google interstitial cystitis and read up on it.