Endometriosis

[KathyT]

Do any of you have this condition? Any experience with it? I just got back from my dr and he thinks this is what I have. I have been referred to a specialist and will go for an ultrasound and then some kind of scope if need be. I am just so glad to finally have something to go by, it has been a painful year.

[AnnW]

Bless your heart! I don't, but have had friends who have..very painful. I didn't realize though that it could just happen, most of the gals I know that have it, have had it for years. Hope you get some relief. Did he mention fibroids, they can mimic endometriosis.
Mandy (Netmechwife) has it, but she hasn't posted in a long time since she said she was having testing for seizures.

[KathyT]

Thanks for the response Ann. He checked for fibroids and thinks I may have one or two small ones, lucky me. I don't know anything about endometriosis except that whatever I have been dealing with has really gotten out of hand pain wise. I asked if it could just happen at any age and he said yes.

[KarlaB]

My step mom had a big scare with it last year because she was misdiagnosed. They were positive she didn't have it and thought she had cancer. She went to the Mayo Clinic for surgery and they found she was pretty much taken over by endometriosis. (Turned out to be a huge relief for us!) They figured she had had it for years although she had had no pain or symptoms. ?(

I also knew a gal who had it in high school and she had surgery for it becasue she was in so much pain. :(

Hope you get some answers and pain relief soon!!

[Diane]

My sister had surgery for endometriosis years ago and I think she's doing okay. I personally don't know that much about it except that it can pretty painful. Here's a link. I hope it helps. :) Good luck!

http://www.endometriosis.org/

Diane... :wave:

[AnnW]

Originally posted by KathyT
Thanks for the response Ann. He checked for fibroids and thinks I may have one or two small ones, lucky me. I don't know anything about endometriosis except that whatever I have been dealing with has really gotten out of hand pain wise. I asked if it could just happen at any age and he said yes.


Fibroids can be horribly painful. They can also cause you to have heavy and painful periods. All the women in my family have had hysterectomies by 40 because of them, but me.

[netmechwife]

Sorry I haven't posted in a while.... Been really busy with testing and pregnancy etc...

I have endometriosis and will be going to a specialist in CA named Dr. Andrew Cook. His website is www.drcook.com. Even if you don't go to him he has tons of information on the condition and is very compasionate toward those who have it. The best thing you can do is become as informed as possible and get the best care you can. Don't let you doc tell you what you "need to do" Be part of your treatment plan. After you read as much as you can you can make an informed decision and know what to ask your doc and whether your docs suggestions might need to be thought over. Be in charge of your care! It's your body. You are hiring your doc to care for it. I have known too many women who went through treatments and surgeries that didn't work just because the doc said that was what they had to do and the doc himself was uninformed on all the facts of endo (many docs are...). If you want to email me feel free: netmechwife@hotmail.com. I haven't been able to check the board often so you may be able to get me more easily by email or I have msn messenger with the same email address or aol Instant messenger: netmechwife
I would love to help you in any way I can. I know how hard it is to go through the physical pain and emotional pain.

[imamama]

I was diagnosed with Endomitriosis when I was 19 and had surgery at 20. But, they couldn't laser the patches off, so I went on Lupron Depo. It's an injection and puts you in a state of menopause. It was miserable, but helped some with the pain. Birth control pills didn't work for me. Then, when the Depo Provera injection came out, I started getting it and it REALLY helped me. Then, 4 years later pregnancy helped!!!
There are probably more options now as this all started for me 12-13 years ago. Now, I found out I have an ovarian cyst. My doc put me on birth control pills to see if it would either shrink it or keep it from growing. I don't have much faith in these pills, though, because they have yet to regulate my cycle and I'm having dull throbbing pain sometimes. As long as it's not gotten bigger, I'm fine!! I'm sure he'll just try me on another kind of pill. So, we'll see.

Good luck with getting treatment for your Endometriosis. Sounds like netmechwife has some great suggestions!!!