Posted on 07/10/2010 9:45:00 AM PDT by kimmie7
Thanks. But all I can offer is my personal experience with it.
Did you get checked for the gene? There is a BRACA test for women who have the gene for breast and ovarian cancer.
If you have it, the thing you want to spend time on is making sure you don’t get ovarian cancer. I hate to talk this way, but it’s a death sentence. People I know who test positive for the genes have just taken out their ovaries, because they don’t want to risk it.
Paved has stated she does counseling for people with the problem. I think that qualifies her to speak somewhat authoritatively.
There are lay people out there that know more than the experts.
No, but I’m not telling this person to undergo a major surgical procedure or to take drugs. I am only telling her to make sure she is obtaining good medical advice. I don’t need to be an expert on the disease to give some good common sense advice. Meanwhile, diagnosed in ‘95, I spent years studying the disease. I don’t think I’m an expert but I am very knowledgeable about it. Are you trying to be a smartaleck? (No response necessary; that was rhetorical).
My sister’s grew to the size of a small melon before they took it and her uterus. Mine just caused me a bunch of cramping, irregular bleeding, that’s what I remember. They took my uterus out 30 years ago during the scare about the new style tampons which I was using.
No, I’m not trying to be a smartaleck. I was responding to your statement from post 34 . . .
***Do not accept advice from anyone who is not an expert on this disease***
You seemed to be sharing advice so I asked if you are an expert. Simple as that. There’s nothing wrong with sharing advice. It’s up to the listener to determine if the advice is worth mulling beyond the listening. :o)
I was diagnosed 27 years ago (at age 25) but had symptoms since age 11. I also experienced infertility. A close friend (since age 10) of mine was a SoCal prez of the Endo Association. Through many years she attempted surgeries and various Rx therapies in addition to exercise and proper nutrition. She was tapped in to the best in the endo specialist industry. Much like my experience, nothing was truly helping and her quality of life was spiraling downward every year .. for years. Ultimately she chose hysterectomy and now lives an amazingly pain free and joyful life.
Many endo sufferers delve into research about the disease (as well they should!) and in the end they must choose for themselves, based on that research and where their heart leads, what path to take. There are no cookie cutter paths. For some that is a completely natural approach, for others it’s ongoing surgeries and Rx therapy, and for yet others it’s a final decision for hysterectomy (after other forms of therapy..never as a 1st choice). As to the latter, the women I know who chose this path all shared that it was the best decision for them. That includes the former SoCal prez of the EA.
All’s grace,
Mrs Tiggywinkle
I’ve had symptoms since around the age of 20 really bad, always had rough periods. I was diagnosed with the laparascopy a little over 2 weeks ago. I’ve been researching ever since. I’ve come to the conclusion that I do NOT want the Lupron injections, and have pretty much decided to request a hysterectomy. I have diverticulosis/itis as well and a host of other medical problems. Having one less to worry about would be quite welcome.
Now she is a grandmother.
As God wills, there are healings. <><
All the women in my family have endo and other issues to varying degrees.
Estrogen is the food of endo.
Many women are surprised to learn that even after a full hyst, if they go on estrogen there is a possibility of endometrial tissue regrowth, especially if the doc doesn't get it all out.
kimmie, please read everything you can get your hands on about hormones. I've been on this rollercoaser my entire adult life. You are lucky to have a doc who is even familiar with PCOS. Many are not. Heck, many don't really give much of a rip about hormone disorders in general, throwing medicine or hormones at you at best, telling you that you are crazy at worst.
If your PCOS has caused your est/prog to go out of balance, maybe some prog would help. I don't have PCOS, but I know women who do.
FYI, I had a complete hyst at the age of 38.
Yep. Ever heard that some women will try soy supplements after a hyst, rather than estrogen? It is because the theory is that soy contains natural components that will assist in estrogen levels.
With all due respect, I don’t think anyone needs to join an association and pay dues just to find information and support. There are lots of free support groups out there, and information is free as well.
Prior to endo did you have any uterine procedures that might have injured your uterine lining?
Just a c-section.
I got my surgery date!! Hysterectomy on the 16th of August! hooray!!
Hi! Just wanted to let you know that I have a surgery date for my hysterectomy for endo/pcos/pain!!
Got the date set for my hysterectomy! So happy.
Great, I hope this puts an end to your miseries. Thanks for listening to my counsel. I hope it helped you come to the right decision. Do you have any new questions? What time’s your surgery scheduled for anyway? Do you mind if I pray for you?
I don’t turn down prayers! ;-)
Don’t know the time yet. I’ve been visiting www.hystersisters.com a lot. Finding lots of answers.
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