What do you want to know about endometriosis?

Endometriosis is often painful and it is definitely scary to hear that you have it. If you’ve just been diagnosed with endometriosis, you have questions – questions for your doctor and perhaps you’d like to ask questions to other women who also have this condition. We preparing a YouTube video with Dr. Destephano, Mayo Clinic, to answer top questions about symptoms, diagnosis, treatments, etc. to help women and girls who have just been diagnosed.

What questions would you like Dr. Destephano to answer? What do you wish you had known when you were first diagnosed with endometriosis?

Hey @loren12 @phoenixzip @airey2 @mcmurf2 and @asegura, did you see this call for questions for Dr. Destephano? We'd like your questions to help create an expert video with the doctor and continue a conversation for women and girls who want to know more about endometriosis. What do you wish you had known when you were first diagnosed?

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I think it is great that someone is making a video to draw awareness to this disease. I think for me the biggest point of frustration/anger was how long it took to be diagnosed to begin with. I am on the “quick” end of that being that it only took 6 years for me when it takes much longer for so many other women. If I was at the start line of my diagnosis again I would like to know:
1. How does one get endo?
2. Can endo be cured?
3. What are the top/main symptoms of endo?
4. What courses of treatment are there available?
5. How can/does endo have an impact on your future?
6. I would have liked to have been heard more. I was dismissed by multiple emergency rooms, told I was over reacting, to go take Advil/Tylenol and “suck it up”….. I think it shuts people down and we do not speak when we are told those things.
7. Endo does not just effect your “lady parts” and I think that most people do not know that and are not told. I would like to see this addressed. (GI was especially a huge problem for me which was constantly misdiagnosed)

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Hi, I would like to know what technology or tests are potentially being developed to better diagnosis endometriosis. Also I would like to know how to bring awareness to this disease to the many potential sufferers and medical professionals so that the "years and years" before diagnosis can be reduced.

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Hi , is there anything you could recommend me doing for my endometriosis pain as I am only young and I can’t have a surgery or anything yet.

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Great idea on video. I had terrible menstrual cramps as teen, and even saw dr who dismissed it as just a "women" thing. Then I ended up hospital at 18 with tumor on ovary due to endometriosis. I had never heard of it. Had surgery at 18 to remove one ovary, then multiple D&C in my 20s and 30s and eventually had hysterotomy at 40.

The endometriosis caused fertility problems.

Some questions that I think video should address:

When is it cramps vs something more serious?
If diagnosed with endometriosis, what are treatment options?
How does endometrioses effect fertility?
Why do we hear more about it now? Is it awareness or because women are waiting to have children later in life.

Laurie

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