Endo, Laproscopy, Now Debating Lupron

Until about 18 months ago I was on the pill. I'd stopped once about 12 years or so ago and ended up having periods every other week, so I went back on it. I never really thought that the bi-monthly periods meant anything really bad. I'd recently tried the Depo shot and had been on the pill before that and just figured that it was my body adjusting to all of that. Fast forward a dozen years and I started having BP issues due to a combination of meds I was on and I had to stop taking the pill. 

At first I didn't really notice any issues. After about 6 months I started developing a lot of yeast infections. It was like it wouldn't go away. Finally, while we were on vacation in Jamaica and I got hit with yet another yeast infection, the Dr there gave me both a cream and a pill to take at the same time. That FINALLY did the trick. That was in May.  In June I started working out really hard and did that for a couple of months before I started having some pains. The first time I felt it was after a pretty intense Pilates workout, so I just assumed I'd strained my ab muscles.  Then a couple of months later it happened again after working out and it hurt so bad I had to lay on the floor for a good 30 minutes before the pain subsided enough to get up. From there it didn't really get better. I saw the Dr and at first he thought it was chostochondritis. I've had this before (it's normally in your chest area rib cage, but evidently can occur in your lower ribs), so it made sense. However, it didn't go away. He said I could keep working out "just do anything that bothers it". Ok, so I avoided ab exercises at first and that was enough.  But, over the next few weeks I realized it was more than that and any type of impact exercise bothered it.  The pain was on my right side just under my lowest rib; between my rib cage and my hip.

I mentioned the pain to my gyno when I was there for something else and she sent me for an ultrasound, which lead to an MRI when they saw a small cyst on my kidney. She then sent me to a Kidney Dr who said that it was all no big deal. From there I went back to my GP who sent me to a GI doc who ran every test in the book over the next few months. Initially, he had decided it was something called Sphincter of Oddi. But he really didn't have anything to go on for it so I avoided the surgery that he wanted to do for that. Finally at one visit I told him that I had the pain during sex. We'd been having sex less and less because I coudln't stand any pressure on my abdomen, but the last time we'd tried it had hurt like hell in exactly that spot. A light bulb went on and he said "sounds like it could be endometriosis". He told me the only sure way to know was laproscopy, so I called my Gyno. At the same time he came up with one more test he hadn't done, so we did that just to be sure. When I called my Gyno she said she could either refer me to a specialist or just do the laproscopy. Not thinking it would take almost 6 months to get with the specialist (who is 2 hours away) I told her to make the appt with the specialist.  After the GI did his last test and basically threw up his hands at me and said he was done, I called her back and asked her to just do the surgery.

After so many negative tests, I didn't expect to find anything. Even my Gyno said "I hope we find something". She really didn't think it woudl be Endo and had already told me how she'd also be looking for scar tissue, etc that might be causing the pain.

I ended up spending the night after the procedure in the hospital due to the pain.  It turned out that I definitely had endo (and a good bit of it). There was a mass that had wrapped itself around and twisted up my falopian tube (see image below).  Then there was endometrioma attached to that... then there was scar tissue attaching all of that to my large intestine. So whenever I moved or did anything that put impact on my body that scar tissue was being pulled on... right where I'd been complaining of the pain (she said).

It's now 3 weeks after the surgery and I'm still recovering. Yesterday was the first time I drove (to my post-op visit with my Gyno). I did too much while I was out and feel it today.  She wants to put me on Lupron (had scheduled it for yesterday but the shot didn't show up). I've been reading a lot online and find so few good reports that I can't justify doing it.  I still have the appt with the specialist the first week of Feb. At this point I'm planning to keep it and see what he says. Although, from the looks of things, Lupron seems to be the favored choice by Drs everywhere.
JustJulie JustJulie
36-40, F
1 Response Jan 10, 2013

Hi Julie,

I tried Lupron my treatment started on June, 2012 for endometriosis level 4 doing the add back therapy this therapy is when they give you some kind of birth control medication to give you some estrogen back, I do not want to disappoint you but it didn't work for me, I was on disability for almost six months because of lupron, couldn't walk because of the pain, I was using a cane to help me get around if you deside to get the injection anyways please becareful and look for these side effects, terrible bone pain, migranes, memory loss, weight gain, hot flahes, anxiety, sleepless nights.
I wish you the best of luck.

Your story is not unlike others I've read. The migraines scare me since that's something I deal with already. The bone pain and bone loss... terrify me.