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.
I saw another doctor today for a 3rd opinion. Basically, I've been debating whether or not to have another lap and wanted another opinion. I'm a bit frustrated and confused by what he is saying. He spent a lot of time with me and said he has known a lot of endo patients. However, he says he does the surgery on them, puts them on lupron, and most of his patients RARELY have any problems after that. So he thinks I'm a rare case to keep having pain after surgery (although I haven't done lupron). Also, my pain isn't always worse on my period.
He says I can't assume endo is the cause of my pain because I did have good surgery (he saw my pics and knows my dr) and have been on bc ever since. He thinks bc should be keeping it at bay (again, he said it is very rare for it not to keep it away). He said that if I try lupron and it doesn't relieve the pain, then endo is not my problem. He also says that very few of his patients have a difficult time with the side effects. Most of them just have some hot flashes. He says the ones that have problems are the ones posting online.
I don't know what to think. I see his point and I do think I should try lupron. At the same time, I didn't want to hear that my pain might not be caused by endo. He wasn't telling me that it was in my head, but it still kind of made me feel crazy. I don't know what else would be causing the pain.
I also had two complex cysts. I guess one went away, and the other one is a hemmorhagic cyst. Any experience with these?
Any thoughts? I know that he is a good gyno for other things. Very experienced...voted top doctor by all these different places, etc.
He says I can't assume endo is the cause of my pain because I did have good surgery (he saw my pics and knows my dr) and have been on bc ever since. He thinks bc should be keeping it at bay (again, he said it is very rare for it not to keep it away). He said that if I try lupron and it doesn't relieve the pain, then endo is not my problem. He also says that very few of his patients have a difficult time with the side effects. Most of them just have some hot flashes. He says the ones that have problems are the ones posting online.
I don't know what to think. I see his point and I do think I should try lupron. At the same time, I didn't want to hear that my pain might not be caused by endo. He wasn't telling me that it was in my head, but it still kind of made me feel crazy. I don't know what else would be causing the pain.
I also had two complex cysts. I guess one went away, and the other one is a hemmorhagic cyst. Any experience with these?
Any thoughts? I know that he is a good gyno for other things. Very experienced...voted top doctor by all these different places, etc.
What I can say about your pain, is there is a possibility that is it caused by something else. My surgeon was extremely up front and told me surgery isn't a guarantee, because do have other things going on. But you also have cysts and I don't care what any Dr says, those can be painful.
Good luck with your decision.
I can understand where your doctor is coming from because with any trusted treatment like excision and BCP/Lupron it really should work for MOST people. However, that doesn't mean you are most people and he has to recognize that. Unfortunately you could be that small group that it doesn't work for.
And yes it could be something else...But I still think it's smart to treat for endo because it just might work. I would exhaust the options you are comfortable with for treating endo before trying to see if something else is the cause because otherwise you'll feel like it's just endo and you didn't try everything. If you exhaust your treatment options then it makes sense to see if there could be another cause, afterall what else could you do even if it is endo?
I was never comfortable with Lupron, but it does work for many women and if I were miserable enough I just might try it. As for the what to do after the 6 months to 1 year of Lupron - if it really worked well for me I would be open to an oophorectomy (removal of ovaries), but obviously that's a super tough and personal choice to make. Also, I know they've been working on a long term pill option so it might be available in the future and you'd know pretty well if it'd work for you.
Also, like VallyWillis mentioned my doctor (he is recognized as an endo specialist) told me my recurrence rate post-op as a late twenties age stage 4 case is about 50%. I don't think this means your doctor is a bad doctor or anything, different doctors can have different and successful approaches...I got 3 conflicting opinions prior to my second lap and I just had to go with the one that seemed the best for me...hard choice for sure.
(sorry this reply got super long!)