Endo - Help with decision

Hello all,
I'm 34 years old and have endo. They tried birth control...bad reaction, laparoscopy with ablation (Oct. 3rd)...swole back up like a balloon with my next cycle. I've been pretty much in constant pain since March, and now the doctor is suggesting Lupron. Honestly, I'm terrified of the drug. I already have severe depression along with some of the other side effects that are listed on the Lupron site, and don't think I can handle it if they get worse. I have read the good and the bad on this stuff. The bad seems to outweigh the good, and even my husband has said there is no way he'll let me risk this treatment.

I have a 15 year old daughter, and we have no plans on extending our family any more. I originally told the doctor that I wanted everything out. Not only because of the estrogen feeding the endo, but for my family history of cancer. The fact that I smoke doesn't help matters any.

This last surgery that she did was a day before my cycle ended. I know that the growths bleed out like the uterus during my cycle. Would this be the reason that she didn't see more than she did? She said that she blasted all that she could see, but if it had all been blasted, I don't think I would have swollen up like a balloon again this soon. I'm supposed to go back to her this Friday, and am so confused as far as what to do. Does anybody have any suggestions? Any help would be greatly greatly appreciated.

Thanks,
Char

Endo is just a nasty, icky disease and I am sorry you have it.

We have several Endometriosis Resources you might want to read through to help you know more about endo. But one thing you do need to know, up front, neither a hyst or BSO will cure endo. Unfortunately, there is no cure at this time, only treatment.

There is no correlation between symptoms and how much endo you have! Sounds weird I know, but this is one reason some drs don't even stage their endo patients. Mine only gave me my stage when I asked because I was being asked so often.

My GYN has told me he has specifically seen women such as myself with little to no endo pain, and we actually have tons of it, stage IV. He has also seen women with horrendous pain, stage I endo, if that!

As I have endo on my bowel walls, I have found that anything affecting my entire GI system affects my endo. (I also have IBS.) The more I adjust my diet to help with GI type bloating, the better my endo bloating is as well.

And, not all endo can be seen. It can be very microscopic in its earliest stages.

I would suggest to check to see if you would be able to see an endometriosis specialist.

Yes, I know that you can read a lot of horrid stuff about Lupron. But I have also read where women have felt it was a wonderful help. One thing my GYN thinks is that if you try Lupron and your current symptoms lessen, then you can be pretty sure endo is the culprit. However, if your symptoms don't decrease, then you know you need to look for other medical conditions. I have not been able to use Lupron as my migraines are too bad so I cannot offer personal opinion. At one point though, I had planned to try it, even had a DEXA scan, as then we would have known if my pain was from the endo. But my neurologist ruled out that option.

Read as much as you can about endo before your appointment Friday. Make a list of every question you can think of and take the list with you.

There is no perfect answer and we all will have a different scenario. Endo does not even act and react the same in all women.

Oh, and do think about your ovaries carefully. Having a dr who is very knowledgeable about endo and hormones is going to be very important for you.

I, with my dr's advice, chose to keep my ovaries, even though we knew they would provide estrogen for my remaining endo. However, at 25 yrs old, we felt that going another 25 yrs on HRT or very limited HRT was not good for my overall health. HRT is very tricky for women with endo as any estrogen can feed endo that was left behind.

Many best wishes to you!

Thanks for the advice. I went to see my counselor on Thursday, and she advised against the Lupron (even though it had worked without bad side effects, it did make her a little depressed).

My husband and I went to the doctor's office on Friday. We discussed the Lupron along with the Depo-Provera. She has decided to do the TAH/BSO due to the fact of how I have reacted to birth control and that I have had no relief since she went in for the laparoscopy. It took her 3 weeks to set the date for the first one. It took her less than 30 minutes to set this one. I am scheduled to go in on Dec. 12 at 8 am.

I am really thankful to those of you who started and contribute to this forum. I'm finding a lot of very helpful information.

Thank you
Char

I was diagnosed with endo at 18; I'm 25 now. I had my 3rd lap in May and was put back on continuous birth control and I have had nothing but problems since. I went in for a follow-up on Oct. 27th about my doctor changing my pills in August (again). We discussed lupron, but I told her that was both not a financial or medical option for me. We agreed then that a tah was the best option and to leave my ovaries for now. I'm scheduled to have the surgery on Jan. 3rd (time undetermined yet because that hospital is a trauma center and only schedules surgeries the day before the surgery date).

I'm going to be honest--I'm a little scared. But I'm also tired of being in pain, bloating, and bleeding all the time regardless of the pill. I'm looking forward to this is a relief to the misery I have gone through. I have my child, my family, and now I want my health.

~nicci