Endometriosis Support Group

Wow! I've SO been where you are. Over the last 6 months actually. I had just about 4 months of Lupron shots -- was still incapacitated by the pain, bleeding almost constantly, etc. I went through a few doctors. Finally was referred to a specialist - reproductive endocrinologist.
He did some blood work and found that the Lupron wasn't keeping my hormones suppressed. No real shocker given how I was feeling, but it was nice to have it confirmed.
I'm now getting injections of Zoladex (similar to Lupron, but an implant) and Lupron. I get one of them every 2 weeks. So far, so good. I'm just now getting back to work and a normal life after about 7 months of constant pain and no work.
I wish you the best in getting well!!!

I am so sorry for both of you. I did NOT do well on lupron. I gained about 20 lbs and I was an emotional mess. The 2nd time I went on it I was actually suicidal.

Lupron definitely doesn't "cure" endo. It may keep it away for awhile. But it is a temporary "fix". I talked to someone who had been on lupron and wanted to do IVF. Her doc said that it would be a waste of her money because they couldn't harvest many eggs. It was so sad. I guess that is a side effect of lupron sometimes too. Not too weird considering it was actually first marketed for PROSTATE cancer!?! Yikes! I hate that we have so few options.

I have my GI visit next Wed. so I guess I'll see what medical marvel I am than! They seem so afraid to say that it is endometriosis it just seems like it is something no one wants to diagnose!!!

ok, first, it's good you're going to get other stuff checked out. Second, research laps b/c my ob/gyn did 1 lap to diagnose and said he'd only do 1 more b/c the surgeries aren't good to your insides if they keep doing them... I had chronic pelvic pain over 2 years, nothing worked to help them... pain pills, continuous bc pills... nothing. I had a hysterectomy 2 months ago, and the pain is gone, completely... and the migrains are too.

Ok, hold on. Does Lupron cause you to "lose" your eggs even after treatment? If anyone knows anything about that I'd really like to know because I am planning on doing IVF when I come off of this in five months! Now I am freaking out...

how can a doc say if ur not ovulating ur not producing endo.... people who have had a hysterec still have it?

That is one question I asked how did I have endo. when I was on birth control because I shouldn't be ovulating than either right??? I didn't get an answer!

ovulation has nothing to do with endo, except you may hurt more during that time. I had a hyst and still have endo, bowels, bladder now ureter!

I know you can have endo without ovulation, as proven by the fact that women with no ovaries or on BC still have it, but I think it must be a factor.
My old doctor (who was very very stupid) didn't believe there was anything wrong with me and put me on Clomid because I had trouble getting pregnant.
Clomid causes you to ovulate (which I was already doing, but I trusted this doctor) and in some cases it even over-stimultes your ovaries.
My endo got soooo much worse when I took Clomid. Not only did my pain double (both during ovulation and the rest of my cycles) but it also caused much heavier periods. Basically all my endo symptoms increased.
I told my current doctor about it and he is convinced that her treatment made me worse.
That makes sense in my mind, but endometriosis is such a difficult disease to understand, even for doctors. My problem is that I feel that a physician who realizes that he/she doesn't understand endo should admit it and refer the patient to someone who can help.
I've read so many theories about what causes endo and what makes it spread, but I think ovulation makes it worse in any case.
Either way, your doctor is wrong because a lot of women still experience what you are going through. It might not correspond with his theories of the disease, but he needs to face the reality.
I do think you are doing everything you can to stop the endo from spreading, but if your pain is still bad, you need to take care of that.
Make an appointment with a pain management specialist. Just make sure when you call that they offer treatments other than narcotics, just so you don't end up at a pill mill by accident.
I am having an injection next month to numb the nerves that are causing my pelvic pain. Its called radio frequency and after it is done I won't feel the pain at all.
I too am on Lupron and my obgyn cannot understand that my pain is still getting worse. So I found a way to treat the pain without pain pills.

That happened to me. The GI dr can't tell you anything. Have you tried going to a specialist? Yes, once you get of lupron it can come back. There is such a thing as taking to much lupron so be careful.