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A MyEndometriosisTeam Member asked a question 💭
Los Angeles, CA

Hi, I’m recently diagnosed and very confused, what is the point of getting a hysterectomy if the endometriosis can still come back to other organs? Or am I crazy wrong? Also, have any of you taken Orlissa? Had the IUD? Did either of those help you? What treatment options have helped you the most?

March 31, 2022
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A MyEndometriosisTeam Member

Thank you

April 6, 2022
A MyEndometriosisTeam Member

There is not any simple answer when it comes to treatment and what is helpful for one person might not help for you.
I personally have not had success with mainstream approach of surgery and hormones. Relief after surgery lasted a few months and then came back worse! Had bad side effect from hormones and could not stay on them long enough to know if they could help with pain.
For now i try to manage with rest, heat, gentle stretching, diet changes, massage, pelvic physio, supplements, CBD products, breathing techniques. It can all be overwhelming trying to find what helps you. I had good days and bad days. Good luck

April 6, 2022
A MyEndometriosisTeam Member

But I have an HMO insurance plan so I don’t think any of these drs are on my plan

March 31, 2022
A MyEndometriosisTeam Member

Hysterectomy is usually last ditch effort to relieve pain, but it typically does not get rid of endometriosis. Orlissa essentially puts you in menopause to prevent the implants(of endometriosis) from becoming inflamed on your organs by stopping your menstruation. I have not heard good things about orlissa. IUD is ok but it takes about 6 months for your menstruation to regulate. Have you tried progesterone only pills? If you are trying to stop menstruation, that may help without or with the IUD. If you are looking for a surgical option, there is something called excision surgery. That removes your peritoneum (the lining around your pelvic organs) and removes some endometriosis, but it usually comes back and may cause scarring in your abdomen call adhesions that can cause pain. I am sorry you have this and I hope you find something that minimizes your pain 💜

March 31, 2022
A MyEndometriosisTeam Member

I had my uterus out a month ago. But they pain returned. I have been taking orilissa and it has not helped me at all yet :( on my next apt I think I'm going to ask to get my ovaries out even though I didn't want to. I can't live in this pain.

March 31, 2022

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