Newly diagnosed

[Jess]

Hi,

I normally post on the hydrocephalus and chiari sites because i have those conditions too, but i was diagnosed with endometriosis a few days ago. I have had really painful periods with nausea, diahrea, cramps, the works, since i was about 16. I have a family history of endo too, so my mom was all over that it was endo when i started to have chronic abd pain since the age of 16 and started having ovarian cysts that would burst. The gyno i saw, which for me was mortifying at 16, said no way you are too young. I have had varying degrees of abd pain since and i am now 25. I ruptured a cyst that put me on the floor on Halloween. I went to the ER on the first because i still could not move. I wasn't sure what it was because i usually feel relatively ok the next day after a cyst bursts. Three days in the hospital with no food or water and i finally insisted on leaving. They were waiting for something, but i don't know what. The surgeon that saw me said to go see this really good ob/gyn. I made an appointment, but had to wait until this last week because he was so booked. I went in thinking what the H--- is he going to do for me anyway. He spent an hour and a half with me and said "your ovary is stuck to your abd wall, who said you don't have endometriosis?" So...finally a diagnosis of something i and my mom have suspected for almost ten years.

I am currently awaiting a surgery date. I have bad adhesions throughout my abd from other surgeries, but the ob/gyn wants to clear out the endo at that time. I hope that takes care of it. Oh please. I will get my ovaries removed if i have to someday, but hope it doesn't come to that.

[Lil E]

I've never had cysts but a couple of months ago I started having pain in my right side. Got some tests and was told I had cysts in the left ovary. Now I had a hysterectomy at 32 with no trouble since. Anyway I kept having pain so bad I was admitted for four days. They told me a cyst won't give that much pain. I said maybe its not a cyst. So now they want me to take Lupron. Its a med with so many side effects it imitates fibro and causes it in some people. I already have fibro so now I have to tell them no. I doubt they will do surgery unless I try it first.

They haven't mentioned Lupron to you? Considering your age I thought they might instead of removing anything. They usually won't unless you've had some kids. My daughter is 31 and has wanted everything taken out but that is the excuse they give her. Now days they use small incisions and lasers instead of chopping you open.

Unfortunately endo comes back a good percentage of the time, sometimes they do surgery and then put you on Lupron. I'd google lupron and learn about it just in case.

[Jess]

Thanks for the reply. I might ask him about Lupron. My doctor decided to laprascopically take down the scar tissue/endo that is in my pelvis, since a surgeon will be taking some out in my upper abd. I have only seen this guy once, but he doesn't seem like the type to do anything drastic unless absolutely necessary.

[Kathi49]

Jess,

Ask about the Lupron but be aware...it throws you into artificial menopause. I am not saying it is a bad thing...just extremely potent. If it were me, and having been through the endo thing for years, I would have it lasered out along with the adhesions. I used to get endo on my ovaries all the time and my RE would laser it out. So, yep, they can clean you out. Of course with me, it would come back about every two to three years but I would just have it lasered out again. And that worked...even if a bit of a pain. It wasn't until I was around age 45 that I told my RE...let's just take it all out. Now, she laughed and said I don't get a hysterectomy just because I want one. So, I said, okay then, am I candidate for one? And she laughed again and said...yes, you are. But then I was given ONE injection of Lupron to put me through menopause first and then addback therapy later. I am telling you Lupron can have some major SE's. Just talk to the doc about it...he may or may not want to try it. I have also read in MANY instances that Lupron can cause major joint and muscle pain LONG after the injection. However, that is usually in the folks that might get two or three injections. I did talk to my Ortho doc about this once and he KNEW what I was talking about. So, just be careful and get all the information you can about it. I am not saying it isn't useful but there can be issues with it. I THINK it was a source of advanced osteoarthritis for me. I never had OA so bad until after that shot. Can't prove it...but I think Lupron contributed to it. And after talking to many other women who have had the Lupron shots, they are all saying the same things. So, just get as much info. as you can about it.

[Jess]

Thanks for letting me know about the Lupron. Artificial menopause would cause a whole new set of issues for me.