Gotta love having a period when you don't have a uterus :P

[Aethne]

I am the proverbial genetic freak.. I was diagnosed with Endo when I was 17, which even after 3 laparoscopies still kept coming back worse and worse.. After 2 miscarriages and then not being able to conceive anymore, I opted to have my cervix and uterus removed at the age of 25.. I had 7 1/2 blissful years of no pain, just the odd cyst every once in a while, and then it started.. Pain and spotting..  I have tried just about everything from various birth control, meds, surgeries, chemically induced menopause and the hysterectomy and nothing seems to affect the progression of this effing disease.. My OBG and I both came to the conclusion that the endo is back and I've been just dealing with it, but it's spreading so far out of it's "normal' area that I now suspect that it's attaching to my right ureter and has caused it to collapse twice now, resulting in surgeries to stretch it back out.. I get chronic renal pain which always seems to coincide with the spotting, which has now gotten to the point where I have to actually wear pads up to about 4 days every month now.. On Aug. 15th I go to see my OBG again to book a surgery to remove my right ovary; at 38 I'm not ready for a total hysto yet.. I guess my question is: Has anyone else gone through this and is it possible that it could've attached to my ureter and possibly even my kidney? In the past year I've had so many CT scans, x-rays and ultrasounds that by all rights I should glow in the dark and they can't find ANYTHING wrong with my kidneys, yet there was VERY visible blood in my urine for a month and a half and while not visible anymore, is still present in EVERY urinalysis I've had done for the past 4 - 5 years.. I don't even know what to think anymore and my doctors are just kind of throwing up their hands and shaking their heads; they have no clue either..

[ticked]

Also have you ever been tested for IC? interstitial cystitis?

It goes hand and hand with Endo, so maybe that is something you need to rule out?

[ticked]

I haven't had a full hyster but I have had ureter involvement since my first surgery. I had it everywhere. All was excised.

7 yrs later I was having serious urine and bowel issues. By the time a surgeon would operate on me I was peeing 60+ a day, sometimes without any kind of sensation to have to pee it would just come out and at other times I had such urgency that the pain was so unreal and debilitating and by the time I would get to the bathroom I would only go a little or nothing at all. It was torture.

When they went in I had carbon residue from the laser being used on my bladder flap which acts as a splinter which could have probably been a reason why this was happening. I also had bother ureters tangled up in scar tissue. One ureter and one ovary still was left embedded into the pelvic wall, however about 90% of the symptoms are gone so it had to be all the scar tissue as well.