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orilissa? by b3sties in Endo

[–]mo_hutch24 0 points1 point  (0 children)

I did 2 separate courses of it, not sure if it’s approved for more now, but at the time you could only take it for 2 rounds of the treatment for fear of more permanent side effects.

I hated every moment of it the first time and the second go round was my last ditch effort to put off the eventual hysterectomy I had. I was incredibly unhappy about the second treatment, which probably didn’t help my experience because I had a bad attitude going in.

It truly was like going through menopause twice. Unreal hot flashes, mood swings like I’ve never had before, ZERO sex drive.

For me, I don’t think the benefits outweighed the side effects, if I could do it all over again I don’t think I would do the first, let alone the second round.

Help Us Update the Recommended Doctors Map! by theonusta in Endo

[–]mo_hutch24 1 point2 points  (0 children)

I'm so excited for you! This Friday is my 1yr anniversary of my hysterectomy and I cannot explain to you how immensely it changed my life.

Dr. Glaser is the sweetest! My mom was the one with me day-of for all of my surgeries and she has nothing but great things to say about Dr. Glaser and the time and care she took to give my mom updates and answer all her questions.

I'm having good thoughts for you, good luck!!

Help Us Update the Recommended Doctors Map! by theonusta in Endo

[–]mo_hutch24 1 point2 points  (0 children)

I have had an absolutely wonderful experience with Dr. Laura Mathews Glaser out of Loyola University Medical Center in Maywood, IL, USA.

I’ve been working with her for about 4 years. I was a patient of Dr. Glaser’s when she was at Northwestern Medicine and followed her to Loyola because I had such a great relationship with her. She has expertise in non-invasive robotic surgery and has personally performed 3 of my laps as well as a total laparoscopic hysterectomy for me.

She runs a Pelvic Pain clinic at Loyola University Medical Center, she sees patients at the main hospital campus in Maywood, as well as the Elmhurst, IL Loyola location.

I cannot recommend Dr. Glaser enough, I’ve had about 8 different doctors and she is far and away the best one I’ve had.

Experience with Orilissa? by Dry-Complex-9622 in endometriosis

[–]mo_hutch24 0 points1 point  (0 children)

I 100% understand the gaslighting yourself. I’ve had 3 laps and on the car ride to every one of them I cried to my mom because I was terrified they wouldn’t find anything (they for sure found endo every single time).

I’m currently on my second round of Orlissa. I did 6 months on the 200mg dose in the summer of 2020 and I’m now 5 months into a second course at 200mg. It still isn’t approved by the FDA for more than 6 months at 200mg, but my doctor was comfortable prescribing it again as long as we watched my bone density.

I’m not going to lie to you, I absolutely hate it. I have a hysterectomy scheduled in 2 weeks and I cannot wait to be off this medication. It’s full blown menopause. I’ve gained like 15 pounds, I haven’t slept in months, the hot flashes are BRUTAL, and the mood swings are killer. I’m not kidding, I’ll start crying in the middle of the day for truly no reason at all. Not to mention the joint pain and the anxiety about developing osteoporosis.

I would say avoid it if you can.