Posted on 07/10/2010 9:45:00 AM PDT by kimmie7
I was just wondering if anyone else is dealing with endometriosis and/or pcos. I've been looking for support groups elsewhere, but most seem to be (excusing the expression) dying out in popularity.
I'm not a new sufferer, but am newly diagnosed wih stage IV endo...and would love to connect with others fighting the same fight. For those others to be FReepers would be even better!
~*(~*( hug )*~)*~
Hi Kimmie. I was dx. in 1995 - Stage IV as well. On my colon and elsewhere. I refused Lupron. I could say more but if you are interested, you can email me here on FR. I do think Lupron is not good. Diet is very, very important and so is exercise. You know that red meat is the food of endo so if you can limit that, that is good. I also have IC (interstitial cystitis), which often goes in tandem with endo. I don’t know what PCOS is. I used to be a counselor on the endo support hotline. There is hope!
That pregancy/birth can cure endo is largely a myth.
Most women experience worse endo than ever.
Not all, but most.
yes.
No such thing as “clearing it up.” It goes into remission or not. It does not just “go away.” Nine months of pregnancy is good b/c the endo does not grow during that time. I spent a long time studying this. Just want you to know.
absolutely right
... and NO soy!!!
it is NOT good for endo sufferers!
Thanks for clearing that up. I wrote him as well. Just like women who think a hysterectomy clears it up. Oh, if that were only so. I used to work with a gal years ago and reconnected at an endo support group. She had it on her lungs. Very bad.
i’m one who the hysto helped.
100%? no. i’d put it at 90%
though. :o)
No, no and no. Hysterectomy is not the answer. Where do you live Kimmie? You need to find a good endo doc who is conservative. Don’t do anything desperate. Contact the Endometriosis Assn. (although I know they are struggling financially). Hysterectomy can bring with it it’s own curses. How we women are abused by the medical establishment.
Your wife was fortunate. It does not end for everyone; it depends where the endo growths are and is much more complex.
Mine hasn’t spread that far, luckily. It is mostly on my girly parts.
Don’t make important medical decisions based on money.
I contacted the EA, but just can’t afford to join right now. I’m in southern KY. I think Vanderbilt may be starting an endo unit soon.
That’s not really how it works, Kimmie. You really need to do some research before you make decisions and don’t think that your doctor will know either. A lot of them are very ignorant about this. Like I said, I was on the hotline for awhile and did extensive research into this. It’s still a mystery to many docs (yes, the ones who should know too). You need to find a good endo doc - someone who specializes in endo. Do not accept advice from anyone who is not an expert on this disease. Also, how old are you?
Okay - there is a place down in Atlanta. I gotta try to remember the name. As for joining the EA. It’s only like $25. It is well worth it. Every penny.
I’m really not. Since most of my endo is on girly parts, and I have the pcos...it would appear that a hyster taking ovaries and cervix as well would offer at least a good bit of pain reduction.
And peace of mind, my birth mother told me yesterday that she and her sister had breast cancer, her mother had ovarian and her aunt had cervical. The sister, mother and aunt all died from their cancer. My Bmother is in remission. Just seems that would be 3 fewer types of cancer to have to worry about.
I’m 41. Pretty much infertile, so future childbearing isn’t a consideration.
Here is the link to the Center for Endometriosis down in Atlanta (not far from you really).
I didn’t tell you to get pregnant; I think that was someone else’s advice. I just sent you a link so go on that site. You will get some great info. You can also talk to them down there. They are great. The Center for Endometriosis has been around for about 20 years. The experts there are the top in this field.
My endo specialist was/is amazing.
He treats my daughter now, who also
has the disease.
***Do not accept advice from anyone who is not an expert on this disease***
With all due respect, are you an expert?
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