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Living Donation Discussion and News => Living Donation Forum => Topic started by: alyfaye on February 22, 2013, 07:37:39 PM

Title: Endometriosis after kidney donation?
Post by: alyfaye on February 22, 2013, 07:37:39 PM

Hi all!
I've really missed this board. After I donated in March I took some time off to travel, and then moved from Texas to DC. I can't believe that it's been nearly a year since the transplant...wow! Unfortunately, lately I've been back in the hospital for an unrelated issue.

I've had difficult periods off and on since I was 16 (sorry this is a tmi post, guys), but it wasn't consistent and birth control plus prescribed pain meds kept them in check. However, since my donation I decided not to start back on birth control, and the pain med (naproxen) is an NSAID that I can no longer take. It's likely that I was just masking the endometriosis. My dr now says that he is 99% sure I have endometriosis, and it's wreaking all kinds of havoc. I find it hard to believe that it's even possible to miss that while taking out my kidney? My OBGYN didn't have much to say about it so I don't have a clue. I mean, endo is diagnosed by performing a laproscopy. My nephrectomy was laproscopic. It seems strange that it would have gone unnoticed or no one thought to mention it to me. I'm just curious if any of you ladies have donated with endo, or found out post-donation that you have endo?

Title: Re: Endometriosis after kidney donation?
Post by: lawphi on March 04, 2013, 05:48:25 PM

I have PCOS and wasn't diagnosed until I tried to start a family shortly after my surgery. I stopped birth control and experienced the belly weight gain, mild hair growth, and period issues. 

I think you are right that your birth control masked the endometriosis.  It just depends on how well controlled your endometriosis was at the time of your surgery and whether or not it had spread outside your uterus. 

In my case, I had a few cysts on the left ovary a week or two after my surgery.  My OB is a good friend and didn't think the surgeon would necessarily notice the cysts removing the vein.  I also had an HSG performed in December and saw my staples near the ovary.  The staples didn't seem to be very close to the ovary, but I am not an expert.