Thank you for posting this video, I just got a call for an endometriosis research program and they wanted me to start Orilissa, I have an appointment with them in 2 weeks, but after this video and several other videos I've watched, I will be contacting them tomorrow to cancel.
Omg ive always had headaches but when i got on Oralissa it did get worse. So many of the symptoms you mentioned are how i feel!! Especially the brain fog
Ugh, I’m sorry you’ve experienced the same side effects! It’s been a long time now since I stopped this medication and I’m still having neck soreness and headaches, and the brain fog is still terrible😕 I hope you have a better experience with it and are at least able to get some symptom/pain relief💛
Jeez I'm so sorry!! I have been feeling the symptoms you describe from my endo, I can't imagine what would happen if I took Orlissa. Definitely not gonna try it if my doctor recommends it...I hope you're feeling better now ❤️
I just came across your video & I know it’s a couple years old but I have to say thank you for posting it and I only wish I’d seen it before. I was on orilissa from July to November and gains 20 lbs. I’m having the hardest time getting back in shape. It’s so frustrating & unlike anything I’ve had to deal with before. Wish I’d never taken Orilissa
I’m so sorry you also had trouble with Orilissa😔 It’s been such a long time since I’ve been off of it and have had some lasting side effects…I really hope you don’t continue to have problems years later!
Thanks for the video! I was on it for 18 months, on the low dose. It helped abate the pain completely but 6 months I experienced severe depression and suicidal thoughts. My doctors put me on Effexor since the pain was gone. Things got much better mentally but then after a year I started to get severe joint pain. It got to the point where I couldn’t lift myself out of the tub or put wait on my bones without them giving out because of the pain. My doctor opted to pull me off of it. It’s also worth noting that I had a surgery in the middle of taking Orilissa and my doctor noted my endo growth was far far far less than I had before in the same time period. However, I’ve been off of it for 6 months and am going in tomorrow for another lap and to get my left ovary removed as it co to use to stick and bond to my uterus and cause pain. Also, interesting thing you mentioned about the hair growth. I didn’t pay it much attention at the time but I also experienced that. Best of luck to you on your journey. Thanks for sharing your story. ♥️
Taryn, thank you for sharing! I'm happy to hear you had some benefit from Orilissa, but that is really too bad about the mental health side effects, as well as the weakness and joint pain that you experienced:( I'm happy for you that you stopped the medication and hope that those side effects go away eventually! Yes, that is something that is supposed to happen with both Orilissa and Lupron...your endometriosis lesions are supposed to reduce in size which I had success with while on Lupron, but for me I did not have that result with Orilissa. Something I am going to touch base on in my next video is about how having surgery while on Orilissa/Lupron...it is not supposed to be optimal as it does disguise and shrink the lesions, making your surgery less effective as these lesions are known to come back after being off of Orilissa/Lupron for over three months. I hope your surgery went well and you are able to be as close to pain free as possible without the use of these drugs:)
Danazol was great for me! Did they have you on 200? That was the dose I was on. I wonder why so many people have such dramatically different experiences. 🤔
Happy to hear Danazol worked well for you! I can’t remember the dose I was on as it was quite a few years ago now, but I had a rough time with it. Everyone is so different…so hard to say what will work and what won’t.
Thank you for posting this video, I just got a call for an endometriosis research program and they wanted me to start Orilissa, I have an appointment with them in 2 weeks, but after this video and several other videos I've watched, I will be contacting them tomorrow to cancel.
Omg ive always had headaches but when i got on Oralissa it did get worse. So many of the symptoms you mentioned are how i feel!! Especially the brain fog
Ugh, I’m sorry you’ve experienced the same side effects! It’s been a long time now since I stopped this medication and I’m still having neck soreness and headaches, and the brain fog is still terrible😕 I hope you have a better experience with it and are at least able to get some symptom/pain relief💛
Jeez I'm so sorry!! I have been feeling the symptoms you describe from my endo, I can't imagine what would happen if I took Orlissa. Definitely not gonna try it if my doctor recommends it...I hope you're feeling better now ❤️
Thank you! I hope you are able to find something that helps you with your symptoms💛
I just came across your video & I know it’s a couple years old but I have to say thank you for posting it and I only wish I’d seen it before. I was on orilissa from July to November and gains 20 lbs. I’m having the hardest time getting back in shape. It’s so frustrating & unlike anything I’ve had to deal with before. Wish I’d never taken Orilissa
I’m so sorry you also had trouble with Orilissa😔 It’s been such a long time since I’ve been off of it and have had some lasting side effects…I really hope you don’t continue to have problems years later!
Thanks for the video! I was on it for 18 months, on the low dose. It helped abate the pain completely but 6 months I experienced severe depression and suicidal thoughts. My doctors put me on Effexor since the pain was gone. Things got much better mentally but then after a year I started to get severe joint pain. It got to the point where I couldn’t lift myself out of the tub or put wait on my bones without them giving out because of the pain. My doctor opted to pull me off of it.
It’s also worth noting that I had a surgery in the middle of taking Orilissa and my doctor noted my endo growth was far far far less than I had before in the same time period. However, I’ve been off of it for 6 months and am going in tomorrow for another lap and to get my left ovary removed as it co to use to stick and bond to my uterus and cause pain.
Also, interesting thing you mentioned about the hair growth. I didn’t pay it much attention at the time but I also experienced that.
Best of luck to you on your journey. Thanks for sharing your story. ♥️
Taryn, thank you for sharing! I'm happy to hear you had some benefit from Orilissa, but that is really too bad about the mental health side effects, as well as the weakness and joint pain that you experienced:( I'm happy for you that you stopped the medication and hope that those side effects go away eventually!
Yes, that is something that is supposed to happen with both Orilissa and Lupron...your endometriosis lesions are supposed to reduce in size which I had success with while on Lupron, but for me I did not have that result with Orilissa. Something I am going to touch base on in my next video is about how having surgery while on Orilissa/Lupron...it is not supposed to be optimal as it does disguise and shrink the lesions, making your surgery less effective as these lesions are known to come back after being off of Orilissa/Lupron for over three months.
I hope your surgery went well and you are able to be as close to pain free as possible without the use of these drugs:)
Danazol was great for me! Did they have you on 200? That was the dose I was on. I wonder why so many people have such dramatically different experiences. 🤔
Happy to hear Danazol worked well for you! I can’t remember the dose I was on as it was quite a few years ago now, but I had a rough time with it. Everyone is so different…so hard to say what will work and what won’t.
On the second day of taking it I became so deeply suicidal I couldn’t be alone. Thank god I have my lap on the 20th
Ugh, that’s awful😔 Good luck with your surgery tomorrow! Wishing you the best outcome💛
Can I message you on ig or something 😢I need to talk to somebody bout this meds is jacking me up horribly I feel hopeless
Of course! Find me @shantelleannemarie
@@shantelleannemarie6190 thanks I sent the request ✨