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Orilissa After Hysterectomy Orilissa After Hysterectomy

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  #1  
Unread 04-28-2019, 07:39 AM
Orilissa After Hysterectomy

I am 6 weeks post op. Surgically diagnosed with Endometriosis and Adenomyosis. Prior to my hysterectomy, I was suffering from right pelvic severe to crippling right sided pelvic pain. It spiked around ovulation and period, but it is all the time pain in some degree. My surgeon suspected the Adenomyosis and the uterine ligaments that had endo were the reasons for my agony...3 weeks/4 weeks after hysterectomy surgery, that horrific shocking stabbing debilitating pelvic pain returned (seemingly during "ovulation") and hasnt entirely let up since (going on two weeks) the pain waxes and wanes. My surgeon wants to put me on medical menopause for a couple of months to see if this pain is helped in a menopausal state. I know that people will go on on how dangerous Lupron and Orilissa is and that a endo specialist is needed. I agree, but it takes months to be seen by a specialist and I cannot go on in pain like this until then, and I think it is fair to do a trial menopause just to see if it helps in any way before taking out my ovaries. So I appreciate those who will caution mre, I am really needing other women reviews, those who have or are taking Orilissa for menopause post hysterectomy. Thank you
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  #2  
Unread 04-28-2019, 12:41 PM
Re: Orilissa After Hysterectomy

I have not had my hysterectomy yet, but I have been on ORILISSA for 3 months now. I have suspected Adenomyosis and severe migraines. The initial week (usually begun at the first day of your menstrual cycle) was not too bad: bleeding and usual 4 day migraine, then I started bleeding again for another week and had one more migraine. The heavy bleeding/clots and "quality of the pain" were different than the usual, crampy-heavy period, it felt more like a wound. That pain and bleeding only lasted a week and my GYN said it was likely more estrogen withdrawal bleeding. The daily pain and cramping was much improved by 3 weeks and I have had no serious problems since then. After week 8, I did begin to have hot flashes, but they have been fairly mild and no mood swings. Now, I rarely have cramps or more than mild pain (except for sex) and have not had a migraine since the second week. My uterus is now 1/2 the size it was and I am preparing to get everything including ovaries taken out on June 18th.
I looked into the drug literature on Orilissa and it works within 24 hours by suppressing the pituitary function. It is short acting and quickly reversible (so DEFINITELY take it the SAME TIME each day!) It does not cause the estrogen surge that Lupron causes. AbbVie has a very good support program IF (and only if) you have been diagnosed with endometriosis. There are coupons available IF you have been dxed with endometriosis as well...it is expensive if you have not ($895 a month.)
  #3  
Unread 04-28-2019, 02:54 PM
Re: Orilissa After Hysterectomy

Thanks so much for the reply. I hope my experience with it is as positive as yours! Good luck with your surgery! I hope you feel better soon!
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  #4  
Unread 06-23-2019, 06:34 PM
Re: Orilissa After Hysterectomy

Hi MGee. Any updates? I took am post TAH, no hormones. Now my doc suspects endo growing in my upper abdominal cavity. He suggested Orlissa. Have you tried it yet? Any results? Hope you are well.
  #5  
Unread 06-27-2019, 06:53 AM
Re: Orilissa After Hysterectomy

My surgery is next week but I’ve been taking Orilissa for 3 months. It has reduced my pain but it has not gone away completely. My worst side effect has been hot flashes. I just randomly break out into a sweat. I also found that it gave me insomnia so I take it in the morning with my first cup of coffee and haven’t had issues sleeping since. I won’t know if it made a difference until next week with my surgery video but all of my scans and bloodwork were indicative of stage 3 or 4 endometriosis. The surgeon recommended the medicine in an effort to reduce the amount of things she needed to cut and burn during the surgery.
  #6  
Unread 01-22-2021, 11:42 AM
Re: Orilissa After Hysterectomy

Hi everyone,

This is my first post. I am 4 year post-TALH, I do still have both ovaries. I struggle with severe endometriosis and have a very spastic pelvic floor that I've been in physical therapy for since 9 months after my hysterectomy. I've finally been approved for Orilissa 150 mg after a year and a half of being denied and I've just filled the medication. I'm terrified to start taking it and I feel so silly that after over a year of fighting to be approved, I'm sitting here crying because I don't know how it will affect me. Before my TALH, I tried every birth control and hormone treatment offered, and Orilissa is the only thing I haven't tried. I have a lot of deep infiltrating endometriosis in my bowel and bladder, and if this medication does not work for me, my only other option is colorectal surgery and a high likelihood of waking up with a permanent colostomy bag. I am hoping that some of you can tell me your experience with Orilissa post-hysterectomy, especially if you had a negative experience with Depo-Lupron, Mirena IUD, or other hormonal birth control options in the past.
Thank you all, I'm happy to be here.
  #7  
Unread 02-22-2021, 07:17 PM
Re: Orilissa After Hysterectomy

I had a hysterectomy in 2014 due to endometriosis but still have 1 ovary . 6 months later my endometriosis was back. My doctor at the time made me jump through a few more hoops and before I knew it she retired. I was scared to seek out another doctor. I waited until my pain had reached my breaking point. I didn't like the 1st doc I seen so on to the next. He listened and heard my concerns. He recommended orilissa and said it would take 3 months to get approved for it and it was costly. I asked for lupron because I have been on it pre-hysterectomy and had good results. He agreed and I have been on lupron for a year now. The first month wasn't bad. I had light hot flashes, little moody, and my pain did get worse for about a week. After that I haven't had any issues. I feel about 96% better. Down side is my lupron is a 3 month shot and my body knows when my 3 months is about up because those last 2 weeks everything comes back but not every 3 months do I experience this sometimes its smooth transaction to the next shot. I am just sad because i have to get off from it because its been a year. My doctor is now recommending a birth control pill. I got off the pill for a reason and don't want to go back. But what else is there?
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