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Orilissa and Lupron

I am 32 years old and have been diagnosed with endometriosis since age 14. At age 19 I had several laparoscopies to deal with the addhesions as well as scar tissue (I have had other abdominal surgeries due to other health issues and I have a very large amount of scar tissue...pretty much everywhere) and an reconstructive surgery. At that time, my doctor tried to preserve my fertility and I had a second set of laparoscopies and another reconstruction around age 25.
My endometriosis is genetic, my grandmother and mother both had it and mine is (according to the doctor) more severe than theirs. They both had complete hysterectomies before age 40 (my grandmother in her 20s and my mother in her early 30s).
I have just gone to see a new doctor and he would like me to learn a bit about Orilissa and Lupron before I decide on whether I want a hysterotomy.
Does anyone have any experience with either of these drugs? I am planning on going through with the hystorectomy as soon as I get a call from the pelvic pain specialist I'm being referred to but I wanted to do as the doctor asked in the meantime. From my understanding, neither of these drugs are meant to be taken for longer than 2 years and I haven't had a good track record with any kind of medicine for this. Every drug I've been given has failed and only made things worse.
My husband and I are going to be starting Foster to Adopt so I am anxious to get things settled before a child is placed in our home because I can hardly function with the endometriosis. It causes me to miss work/get sent home early and when I am home I have no energy which isn't conducive to having a kid!
Any help would be greatly appreciated! Thanks!

  1. Hi , while you wait for other community members to chime in with their experiences, I wanted to share some articles that may be insightful to you about both forms of medication. Here is the experience of one of our advocates on orilissa:

    https://endometriosis.net/living/orilissa-hot-flash/

    And here is what another advocate wrote about their experience on lupron:

    https://endometriosis.net/living/my-experience-lupron/

    Don’t be afraid to ask for a second opinion from a different doctor if you feel you need to. I understand wanting to have a symptom-free life, or at least one that is not full of flare-ups that are hard to manage. In my case, I went on the pill form of the provera shot. It has helped me achieved an almost symptom-free existence, although I know it’s not a permanent solution. But it has helped enormously.

    Thanks for being a member of this community. If you have any more questions, just let us know 😀 – Jessie (team member)

    1. Thanks so much for these! They really helped and I'm even more sure of my plan to go through with the surgery after reading them. Honestly, I've been ready for a few years but was told by family that no one would preform it on me due to my age. Luckily, my new doctor said that given how long I've had endometriosis and the amount of pain I'm in then he see no reason why I can't have the surgery.

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