Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
So I had enough pain and was tired of it called and scheduled an appointment Monday to see my doctor. Told him my pain is getting worse and have had 4 Lupron injections so far. He told me that Lupron makes endometriosis "disappear" but everthing I have read says it just puts a "band-aid" on the problem. So he referred me to a GI to check my digestive system and make sure I don't have something else. I'm so ready to just open me up again. It has been way over a year of chronic pain and already had 3 lapo's and ready for another one! I'm going to see the GI doctor to make my OBGYN feel better and have another sono. to make sure I don't have a cyst but he told me since I'm not ovulating there is no way my body can produce more endometriosis! Ugh I hate doctors and I hate this disease!
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!!!
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.
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.