anyone here have endo on their bladder?

[ALT76]

I was just at my dr today, because I thought I had a UTI over the weekend when I got my period, and the test was negative.  I have endometriosis (and PCOS) and since last Friday I have had a CONSTANT urge to pee.  When it came on the urge was definitely the worst, and since then, there's times when it's worse than others, but it's always there to some degree.  I just started taking the pill for the first time in 7 years last Wednesday when I got my period, so I was hoping maybe this was some weird side effect or maybe the pill was causing interstitial cystitis.  I have no actual pain urinating or burning, but I ALWAYS have pelvic pain.  Something that I've lived with for a long time with the endo and cysts I keep getting.  It has been worse than ever lately.  I don't necessarily think this doctor is right - which is why I'm here asking for your opinions.  He thinks that the constant urgency to urinate is from endo growing on my bladder.

Does anyone here have this problem?  If so, how did it start for you?  From what I read, it sounds MUCH worse than what I'm experiencing - I have no blood in my urine or pus, and no pain urinating.  Just the urge.  I'm sure everyone's different, but I'm just wondering if those are more advanced symptoms and it can start out with just an urge?  This wasn't my actual doctor - my dr is on vacation for the week so this guy is the other obgyn in his office.  When I got the UTI test over the weekend from my GP, he prescribed me some pills to relax my bladder to keep it from spasming.  They really helped at first, but now they just help a little.  

I can't take this having to pee feeling, so if this is what it is then I'm wondering if I should push for a cystoscopy?  They've been trying to get me to have another lap for some time now, but my last one was just 9 months ago, and I can't afford to take off of work again, so I'm trying to hold off.

Let me know what you think if you have endo on your bladder (or any other opinions are obviously welcome!)

thanks

[jess4412]

Thank you for that info achilles2, that's actuallly really close to me!

[achilles2]

Michael E Toaff MD
1201 County Line Road Suite 100
Bryn Mawr, PA 19010
Phone: [phone]

[jess4412]

Thanks achilles2 that is very helpful. Where in PA?

[achilles2]

I am sorry that you are still having problems. I have endo on my ureter and bladder twice (besides having IC) and both times my surgeon (and endo specialist who travels the world teaching and is on the endo assoc board) removed it off both the bladder and ureter. There is an endo guy in PA and here is the link if you would like to contact him. You can leave a message on his site and he get back to you. (I know someone who did this and he called her, even though she was in another state.)
http://althysterectomy.org/meet_dr_toaff.htm

Or you can contact the endo assoc to see if they would recommend. If you can get to NY I would recommend Dr. Nezhat he is one of the best in the world!
http://www.nywomenshealth.com/md-farr-nezhat-st-lukes-roosevelt-hospital-new-york.htm

I hope this helps,
achilles2

[jess4412]

I have endo on the bladder (and left ureter), so I know ridiculously frequent urination and urgency like nobodies business.  My doctor's were SURE they would find IC, but cystoscopy showed I have a very healthy bladder (on the inside :P).  Laporoscopy confirmed endo was on the bladder and ureter, which was considered to be causing the urination issues.  

It feels like I can't hold anything I drink! I drink a glass of water and within 10-15 minutes I have to pee! And then I usually pee two more times from that same glass of water!  It's crazy and I HATE it. You might consider looking into pelvic floor dysfunction.  A lot of women with endo develop that (your muscles loose ability to properly coordinate/remain in spasm (they call it high-tone in the muscles), and that pressure/lack of proper coordination can make urinary frequency even more of a problem.  


So my question to all of you ladies with endo on the urinary tract:  Anyone else have it on the ureter?! Because I can never find adequate info on it, and it's always burning in my brain that it's there! (They didn't remove it, due to risks of blockage, which could lead to kidney damage).  But I always can't help but wonder if that's why my pain and symptoms continue to reoccur.  It's been almost 15 months since the lap and I'm still having so many problems, as I have been since 6 months after surgery.  My pelvic floor always flares up on the left side, and that endo is still there on that left ureter, and that just doesn't seem like a very good situation to remain in...

  

[am511]

I would look into interstitial cystitis. I had similar symptomes and they diagnosed me with IC. just a thought!!