Endometriosis

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Has Visanne stopped working for anyone else after three months?

Has Visanne stopped working for anyone else after three months?

I began on Visanne early this year and for me it has been a miracle! My last period was in February of this year, and then March, April, May I didn’t have one on Visanne. I had three months of bliss being pain free!
Suddenly out of the blue though, I started spotting two weeks ago and having mild pain and then yesterday my period started fully, and my endometriosis pain is here FULL ON. Excruciatingly. Has this happened to anyone else? I am so lost… read more

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A MyEndometriosisTeam Member said:

This is an easy one. Did you see a Gynecologist or a specialist? If you were prescribed Visanne WITHOUT undergoing a laparoscopy (the golden standard… read more

posted about 1 hour ago
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Lupron Depot or Lysteda?

Lupron Depot or Lysteda?

Hello!! I want to know if some of you have treated these medications and if it has helped you.

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A MyEndometriosisTeam Member said:

Join Nancy's Nook Education Group. They warn against it and that it doesn't help or treat Endo. Only Excision Surgery.

posted about 13 hours ago
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Any suggestions for mood swings as a result of taking visanne?

Any suggestions for mood swings as a result of taking visanne?

I've been on visanne for 4 weeks now. I've noticed a few side effects however the worst is the mood swings and depression. My friends, family and boyfriend are sick of me and my mood swings because they don't understand what I'm going through. It is very frustrating because this isn't me and im not sure how to control it. I'm just wondering if anyone who has taken visanne has any recommendations on how to deal with the mood swings and if/when they go… read more

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A MyEndometriosisTeam Member said:

@A MyEndometriosisTeam Member If you have severe mood swings and/or depression while taking Visanne - stop it immediately. I'm not a doctor and I can't… read more

posted about 1 hour ago
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Relief

Relief

I would love to know if diet, exercise or what have you has helped in the symptoms of endo I have found some relief through specific supplements but would be interested in hearing others!

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A MyEndometriosisTeam Member said:

Excision surgery, yoga, Endo diet, bowel supplements, antidepressants, pelvic floor therapy

posted over 3 years ago
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Looking for Endo specialist near Allentown, PA

Looking for Endo specialist near Allentown, PA

I don’t feel like my current GYN is taking my constant pain seriously. I had surgery scheduled to remove a large cyst - it ended up bursting and I told them I still had pain- they said they could cancel surgery or do exploratory surgery - I responded by asking questions about the benefits of exploratory surgery, etc. and instead of responding they just cancelled the surgery. I feel stupid because I don’t know if what I’m experiencing is because of Endo or not but no… read more

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A MyEndometriosisTeam Member said:

You're welcome. Dr. Thias Aliabadi recommended them to me yesterday when I called for East Coast referrals.

posted about 8 hours ago
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Posting a question on Nancy's Nook Group?

Posting a question on Nancy's Nook Group?

Does any one know how to proceed for a post on Nancy's Nook Education Group?
During my search on Excision Surgeon List for Egypt. Egypt wasn't there.
But I saw a video of Dr Mohamed A.Mabrouk on Nancy's Nook . I noticed that he is Egyptian from Alex.But, he is working in U.K as i think.
So , i posted asking Nancy about not having Egypt in List and to help to get Contact with Dr Mohamed A. Mabrouk to ask for possibility to perform Excision Surgery in Egypt .
Can any one… read more

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A MyEndometriosisTeam Member said:

Thanks I'll check maybe UVA or VCU first. But Atlanta sounds promising if not and only about 10 hour drive from me.

posted about 9 hours ago
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Haven't had an official diagnosis, kind of stuck with doctors after them saying it was highly possible. Next step/ suggestions?

Haven't had an official diagnosis, kind of stuck with doctors after them saying it was highly possible. Next step/ suggestions?

A few years ago, my doctor asked if i knew what endo was. At the time it was new to me, now I know a little more. The doctors I have gone to have said it is highly likely with my symptoms and everything that I have endo. We did ultrasounds to check for cysts. My question is what is the best plan of action next? Do I keep prying for answers? Or is it just IBS? Thanks!

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A MyEndometriosisTeam Member said:

Next Step is to Join Nancy's Nook Education group if hasn't joined till yet. Search in Excision for a specialist near your living. Proceed for read more

posted about 13 hours ago
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Celiac?

Celiac?

Does anyone also have celiac? Over the years my GI struggles have gotten worse. I always thought it was my endo, cause i do have it in my bowels. But now i'm noticing that i get sick after eating gluten.

But then i started to notice other things. I was complaining of joint pain alot, and some other things that none of my doctors have attributed to endo. I was previously sent to a rheumatologist to be checked for fibromyalgia and arthritis and etc, all came back negative.

Upon looking up gluten… read more

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A MyEndometriosisTeam Member said:

I've had a lot of weird symptoms with my endo as well. I just had a double intestinal resection surgery April 1 because mine is so bad. Now there are… read more

posted 1 day ago
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Has anyone tried Orilissa?

Has anyone tried Orilissa?

Hello,

I have suffered from debilitating pain with my ovulation and periods for 15 years. I was diagnosed with endometriosis in my ovaries. Has anyone here tried Orilissa for pain? It’s very new and I haven’t been able to find any patient reviews online. If this medication works without crazy side effects it would change my life. I’m excited about it but don’t want to get my hopes up. Please let me know if you take it/have taken it, know someone who has or even if you have any advice on… read more

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A MyEndometriosisTeam Member said:

Early morning, thank you! I’ve never heard of norethindrone I’ll be asking my doctor about that and if it might be a good choice for me to also add on.… read more

posted 4 months ago
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Has anyone tried the new endo treatment Elagolix (ORILISSA)?

Has anyone tried the new endo treatment Elagolix (ORILISSA)?

I try to keep up on the latest endo treatments and I have been following this drug development since 2016. I hear it is basically a pill version of Lupron but I am not sure if that is 100% true. Do you guys know if it is basically Lupron and/or have you tried it?

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A MyEndometriosisTeam Member said:

That’s all great to hear! My dr seemed so negative about it but he is really pushing a hysterectomy now, so that may be why.

edited, originally posted 4 months ago
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