Month 2 & 3 on Orilissa | Liver Problems | Nausea
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- Опубліковано 6 жов 2024
- Hello Y'all, here is my reflection on month two and three of taking Orilissa for my medication. If you have not already I highly recommend watching my one-month video (linked below) because I cover some symptoms that I don't in this video.
As I said in the video. Months two and three were filled with a lot of nausea and some breakthrough pain. Nausea could be explained partially from the liver problems, but could also have been having been some IBS type stuff mixed in there too. Regardless, I hope you find this video helpful on your journey.
Please comment and let me know what your experience on Orilissa has been!
*Link to month one on Orlilssa Video*
• One Month On Orilissa ...
I had severe nausea and vomiting with the medication. I only took it for 3 weeks before I had to stop. In that time I lost 10 pounds and was already small to begin with. I couldn’t eat anything. I kept calling the doctor telling him it was making me sick and he kept telling me it wasn’t the medication. Said it was normal to have some nausea in the beginning but it should have subsided. Told me it was probably a bad GI bug. I ended up in the ER because I kept getting worse. They found high LFTs and the ER doctor found the liver warnings on the medication and told me to immediately stop the medication. I am currently waiting to recheck my LFTs to make sure they are coming down. I am still sick but feeling some slow improvements day by day. I just wanted to put it out there for anyone else who may have the same thing happen to them. Listen to your body! I’m glad my husband took me to the ER when he did or I certainly could have gotten much much worse.
Please continue making videos they are beyond helpful I had the same issues with orillisa, I just had my first lap surgery June 4th. Luckily even tho I am 19 I was able to get it. Its upsetting how much doctors do discriminate. I am on an endo support group it's an app and I have recommended you to many of the women on there to watch. It's nice hearing others stories and not feeling so isolated
Nicole Sciacca what is the app called?
What’s the app called i really need some help & advice
I'm 18!! I just started this medication. It is so nice meeting someone else this young dealing with it. Sending you healing
Which app?
I love the bedroom aesthetic!
I took my last birth control pill today and I start Orilissa tomorrow. The side effects are what scare me most. Thanks for sharing your experience. I pray that it works for me, if not I see another surgery in my future. Endometriosis sucks!!!
How are you doing now?
I didn’t even make it to week 2, I had TERRIBLE headaches that would not go away no matter what I took, I could not go to the bathroom (SEVERELY CONSTIPATED), the hot flashes were non stop, the insomnia was getting in the way of my daily living! After I stopped I got my period twice in one month and haven’t had a period for a month (from December 3-January 3). After all that I had given up on birth controls/endometriosis meds AND MEDS IN GENERAL. I finally found a black female doctor who was actually listening to be and relating to me instead of rejecting me because of my refusal for more medications! I scheduled my surgery for March 24th to be diagnosed with endometriosis, HOPEFULLY nothing goes wrong and I will be good from there on out! ❤️🙏🏾
Pleeease can you continue to make videos? I love your style of video and just how you make us all feel welcome and wanted here, I hope you're doing better now, would love an update and maybe a video about the surgery ect... I've been suffering with endometriosis for at least 10 years now and have been chucked from doctor to doctor feeling like a nuisance and liar, I'm still waiting for an official diagnosis too... You may not have 1000s of subscribers yet but the ones you do have value your content more than you know! It's very informative, comforting and you've an aura that's hard to find. I'm sure you have your reasons for not posting recently and I hope it's nothing serious! I just hope you can find the time to start posting again as I really do enjoy your content 😌❤️
I'm currently taking Orilissa an the side affects that I experience suck. I wake up everyday with a sore body like I ran a marathon the day before. I have hot flashes, headaches, insomnia, severe depression and mood swings and at night I feel like a drank a full bottle of liquor an feel hangover. I feel like taking this drug just adds more issues on top of my endo.
I took Orlissa for six days and I was spotting and cramping. I also noticed a decline in my mood.
Thank you so much for sharing your experience with us. I have sever endometriosis and I was at the point that I could not function my normal daily activity. I had tried birth controls and high dosage of pain killer, but none of those work. So my OBG doctor prescribed me the Orilissa. I have many concerns about this drug since it's fairly new to the market. But after watching your video, I will be on look out for any effects symptoms. I appreciated that you mentioned IUD. I will bring that to my OBG doctor in the next visit. Many many thanks for all your videos!
Sooooo happy you filmed this. I just got this prescription and I’m feeling skeptical
Thank you, your content is spot on and I really appreciate it even in 2021. I started Orilissa on Tuesday after a lengthy surgery consult for endometriosis. I am definitely more conservative about my medication and as important as it is to be medically compliant, I am not interested in medicating my medication. My doctor is using this medication temporarily as a non-surgical indication of endo before surgery. Be well, ladies.
Thank you so much for this. Also, I must say, your drive and tenacity is so beautiful. You are a gem. 💎❤️
There is something called bowel endometriosis, and apparently is mistaken by ibs. I am so grateful for this video, because l was thinking of trying it. I will prefer take pain killers. And suffer than take that medication
Everyone is different. I’m starting mine tomorrow.
Thank you for sharing this. I have been on Orilissa for 2 weeks and have felt awful. I appreciate you sharing your journey. Making an appointment with GYN tomorrow because I’ve felt nauseous all weekend.
Like many of you, I have had surgeries to "remove" endometriosis. I have one ovary left- everything else has been removed (uterus, tubes, right ovary, cervix), but I am still having pain. Unfortunately, endometriosis loves scar tissue and since I've had three surgeries- I have a lot of scar tissue. They discovered in the last surgery that endo had spread to my intestines as well as my appendix. I kept my ovary so that I wouldn't go into menopause, but now I have a cyst in that ovary. I started taking Orilissa a week ago to prevent having yet another surgery hoping that the medication would decrease pain and shrink the cyst. The only side effect I have at this point is feeling depressed. I don't know if this is because of the situation and realizing that after everything I've done to rid this disease- I still am still not free of it? Or if it is due to the meds. Either way, I am going to keep taking it. I have to say, I do feel less pain, but it is still early on and I'm not sure if it's in my head. Thanks for everyone's comments- it's nice to know I'm not alone.
I know it has been a year since you posted but I'm very curious how you managed on orilissa because our stories are similar!
Yes can you let us know I cry everyday and I’m so depressing ...two surgeries and I’m still in pain
@@marag1563 are you currently taking Orilissa? I have been on it for over 2 months and i am doing better. The first 2 weeks i didnt notice a change. Then in the 3rd, i started having some joint pain and headaches. I hate the idea of being on any medications so I was adamant that I couldnt handle the side effects and wanted off. But i kept with it until the 4 week mark when i had a recheck with my doc. Ultrasound at 4 weeks so one cyst had shrunk in size and the other was ruptured/leaking fluid. So doc said stick with it and i did. At 8 week check up, 2 months on orilissa, both cysts were gone. However, i had about 5-6 new ones, much smaller. Doc says i am text book endo with an overactive ovary (lost one ovary in 2010 to very large cystadenoma). Am going on 3rd month and doing great. Can tell the difference in lower hormones but pain is better and hopefully, still keeping the cysts from getting too big.
tourtney17 good day no I’m not taking Orilissa ! I will be going to see a fertility endocrine tomorrow to see what treatment he suggested but My Doc assistant told today that he maybe put me orilissa that how I came about this video and was reading the comment ...I had my right ovary and both tubes remove nov 2019 which makes me so depressed along with pain I’m facing after I did this surgery mind you I went to take out fibroids this to know my ovary and tubes remove...after the surgery can you imagine devastated much ...I start having pain again now I heard I have a cyst on my left ovary did a mri on Friday they say I now have water my tubes mind u they say they take them out /I’m confuse depress thanks God for my family.
This disease taking over my life at this point 😭
Im in a similar situation, I have endo but I have 2 C-sections surgeries done in the past and now I have only my two ovaries after the hysterectomy I had done a year ago and I’m waiting for orillisa from my insurance. I’m in so much pain all the time because I have scar tissue from C-sections and endo I guess
I’m in same boat.Trying Orilissa because they want me to try it before surgery .Thank u for the video such a big help!!😊😊
Thank you for making these videos on your experience with Orilissa. I'm 34 now and I had my first surgery at 23 to confirm I had stage 3 endometriosis and to remove all the growths and cysts. I was put on Lupron at first and that drug was making down right insane so I eventually got off of it. I was able to get pregnant with my daughter soon after and for 8 years I've been on an injection of Depo Prevera. My body started getting used to the Depo shot so my endo has been growing back slowly over the past couple years and now it doesn't work at all. I've been dealing with some pretty bad pain for the past 9-10 months, and it feels exactly like it did 11 years ago before my first surgery. My OBGYN put me on Orilissa a month ago and I found videos like yours of women who have actually been on it. The Orilissa has help to take the edge off of my pain but it's still there and some days it feels just as bad as it did before. I am getting the same symptoms with my liver already along with muscle tremors (especially in my lip and hands) which Orilissa is the only new medication I've been on in years. I feel like I am hungover, very nauseous, thirsty, cloudily brain, and I quit drinking 6 years ago. I've had hot flashes, insomnia, feeling fatigued and thinning of my bones for 11 years now with all the hormone drugs I've been on so that wasn't new, but the liver damage is a new thing. Thank you again for these videos, just confirms I need to get my liver tested at my next appt. My next step is finally getting a hysterotomy, I am so done with the pain and all the hormone drugs I've been on.
Thank you for this video. I have been suffering with endometriosis ever since I began my cycle, but I wasn’t properly diagnosed until 2004. My doctor has mentioned this drug to me and I’ve been doing some research and so far all of the women are saying that the side effects are really bothersome. I already have hot flashes and headaches and I don’t want to take something that will make them worse. I think I’m going to tell him no.
Thank you so much for these videos. My dr prescribed this, and quickly went through the side effects, I had to do the research on my own, and I was terrified to start this med! I sent her several messages wanting clarification on things, such as would I need a bone scan, should I take calcium and vitamin D, should I have my liver tested periodically, and the response was just reiterating side effects and I felt as though my concern was being minimized. I did start taking it, out of desperation, and I’m very nervous about the potential side effects. 😬
I’ve been on this medication for about a month now. I’ve had 4 surgeries. My last one we removed my right ovary and Fallopian tube, along with my appendix. I’ve been on various medications, lupron being one of them... did nerve blocks, pelvic floor physical therapy... I was on the higher dose of orlissa and was getting the hot flashes and night sweats. I’ve had these since the lupron injections (years), and started getting migraines just about every day, and now breakthrough pain. It was and is horrible! Anyways, we are switching to the 150 mg, to see if it helps with the side effects, but I’m at the point of saying no more! Thank you for sharing your experience. I hope you don’t have to deal with the pain as much!
@marissa amaro. I had the same effects with Lupron shots. It was so miserable. I’m now on orlissa and now I’m beginning to start having the same side effects.
As of today (GYN app. Today) im starting this medication. I’m doing the high dose for 6 months. (Stage 4/severe Endometriosis - over all organs/intestines, up into my diaphragm) i has surgery in 2015 and plan on another this summer. I’m switching from norethadrone and sprintec to orilissa. I really appreciate you making these videos! So many people do not understand how debilitating this disease is. My worry is that this is for “pain” ... so does it also manage the spread of the disease?! I will start posting videos of my experience with this medication
Hello. They said me the same thing stage 4 of the disease. Can you please share your experience with me. I'm not sure if take or not this pills.
I just started this Monday, it took forever it seems for BCBS to approve it for me but I have it now. I have had 2 surgeries in the past to remove Endo and it still remains a constant source of pain. So far I haven't had any of the issues you have had, although I am super grateful for your videos because if any of these symptoms come up, I now feel comfortable going to the doctor and saying I have issues if something happens. The two best things about this medication for me is so far no pain (I still have to see how it is when I'm on my period but I was in pain about 2 weeks out of the month) and my severe exhaustion has dissipated somewhat, I feel like I can think clearly and doing basic things no longer seems like climbing a mountain. Hopefully, I can continue like this for a few months and live a normal life for a little while.. I'm already dreading going back to how it was...
Amber Thomson I’m so glad to hear that it is helping you. Like I said it really did improve my pain levels for a while. I am also glad that you feel more comfortable going to your doctor now. It is so impotent to be in communication with them especially because this is a very new drug to come onto the market.
Hi Amber! How do you feel now after four months? Still feel good? I just talked to my doctor about this but Im very concerned.
I have endo on my liver this is one of my biggest fears. The endo and the orilissa giving my liver a hard time! I'm trying to decide if I should take this medication at all. Thank you so much for sharing your journey with the disease and with diet,self care, it is reaching a lot of people. You've helped me in my journey
I have endo, 😔.You are strong, thanks for all your videos.Helpful
I am actually starting this medication tomorrow! Your videos were very helpful!
Ok, skin!!! Can we get a video on how you manage your skin with endo -it's been real
Sorry to all 🤦🏻♀️😔who suffered with symptoms from Orilissa. I went from Lupron injections to Orilissa. Since taking it I have had irregular bleeding/spotting for 2-3 months and horrendous pain. I saw my gynecologist recently and she said she didn’t know what else to do for me. I have the option to take birth control or see a specialist. I am choosing to see a specialist.
I've been on Orilissa 4 or 5 months. Seemed like it helped some with the pain in the beginning but now I've started having bad pelvic pain again. The hot flashes suck too. Thinking about going off of them. 😕 I also worry about what they could be doing to my liver.... I've had 3 surgeries for my Endometriosis.
Thank you for making this video. It’s helped me a lot. I’ve been on the depo for almost a year now and stopped it because it made me gain weight and as you girls know, that’s a big deal. So my gyn recommended to start taking this. I’m scared to try it out because of all the side effects but don’t want to keep gaining weight on the depo. I feel lost at what to do.
Hope you are free from endo pain now! My insurance wouldn’t cover Orillissa so I’m going to get the 3 month Lupron shot while waiting for my hysterectomy (I’m 41 dx with endo, adeno, fibroids at 25 and a ton of polyps last year).
Does the Lupron shot help? My insurance doesn't cover Orlissa either.
I just recently heard of Orlissa for the first time while living in California. Literally in the last two months was my first time hearing about it. (I don't watch a whole lot of TV nor have I seen a doctor since being laid off about a year ago, so that could be one reason I had no clue it existed) I have however, taken Lupron (the chemotherapy drug). I used Lupron for about 3 months, and the hot flashes were absolutely the worst side effect that I experienced. I don't remember experiencing much nausea at all with Lupron. I personally don't see myself getting back on the drug only because (just like Orlissa) it's kind of just a band-aid to the problem. A couple of months after my last chemo injection, the pain returned like it never left. It was a little different, but not better. I'm grateful for you sharing your experience with this new drug. I am always skeptical of western meds in general... but what can we do? lol :) Don't give up, and I wish you the best. #newsubbie
I have been having a terrible time on it... I have been on it for 4 months, I have gained 35lbs and I eat even less than I was able to before the Orilissa... The extra weight is affecting another chronic condition I have, so I might have to get off of the Orilissa soon. The 2 point pain level decrease from the endo has been over taken by the pain in my tendons, ligaments, and basically all my joints. I was a very petite person, now I look about 7 months pregnant. Aye, my poor skin will never be the same it stretched so fast it looks ripped in some places. I react badly to most medications though, so my experience is a weird one. Oh! I have only gotten a period every other month so I don't get that at all either. Sorry for the rant... I am just so frustrated cause I am kinda running out of options for my case. I definitely cannot do a full to years like this.
I stopped taking this medication a couple months ago I was on it for a year I stopped taking it because I was still having periods and my doctor told me i wasn’t suppose to have a period while taking the medication but I was so I gave it a chance for a year it did help me with my pain but the problem that I am having is since I stopped taking the medication my mood swings have become intense and my knees and breast have been hurting so bad one of the side affects is tendered breast, another is mood swings, and bone loss. I have stage four endometriosis and I had surgery last year and my doctor wanted to take out my ovary because it was in such bad shape. Endometriosis is no joke it’s the most horrible thing a women could go through. I’m on my second surgery and I’m not even 30 yet.
I'm 32 and I've had two surgeries so far....I was diagnosed with endometriosis at 31. Endometriosis is debilita and isolating. I've been prescribed Orlissa, but after taking it six days, I discontinued the use. I'm going to change my diet and lose some weight and see how that works for me. Every day is a battle with this awful disease. Sending you positive vibes ❣
SO thankful to have come across your channel. I just started the orilissa 4 days ago and have had some nausea already. However I am like you and have had IBS complications from the endo so it could be either at this point. Since this is a fairly new drug I have been looking for any feedback I could find. Thanks again for the videos.
I’ve been on it for about 3 weeks. I’ve had hot flashes a couple of times. My pain is down significantly. I haven’t had any bad side effects yet (hopefully won’t get them) but my libido has been a lot higher and it wasn’t low before I started.
Orilissa shrunk my tumor and eliminated the excruciating pain, BUT, it also shrunk my skeleton, permanently it seems. Couldn't fit into clothes ..became skin and bones
not feeling well
My endometriosis is back and extremely painful
Dr says to also remove my ovaries if pain meds doesn’t help ., I guess removing my uterus was pointless since she told me endometriosis is in the ovaries and painful each time I ovulate … it’s soooo painful .. I’m 41 years old I literally called my mom sobbing 😭
I'm starting taking it tonight. I have to at least try it before they will take the ovary and uterus out. Crossing my fingers that it helps.
I’m on day 6 of this medicine I don’t think it’s really helping to be honest. I’m still having a lot of pain, constant spotting, hot flashes, nausea. Also the joint pain makes me feel like I got run over by a truck. It’s so unfair what we have to go through.
Thanks for the videos, I am headed into 2 months on the medicine. I will admit that the liver issues was something that is a concern of mine due to being diagnosed years ago with a "fatty" liver. Since that I've changed my diet and bloodwork over the years have been good, but my fear is that this medicine will bring the issues back to light. I too dealt with the hot flashes, they seem to come and go, some days worse than others.
One question I do have for you or anyone reading the comments; did you ever feel weak while on orilissa? I sit here some evenings and just feel wiped out and have no energy. I want to say my bones hurt, even though that sounds weird! I'm hoping that all goes away, but I almost feel like it's causing me to lose muscle and causing weakness. Any thoughts are appreciated!
It makes sense your bones hurt. Are you taking any medication with Orilissa to help with bone strength? Maybe calcium supplements could help. Sending you healing!! I just started this medication and they have me on another medication to help with my bones.
I am taking calcium and orilissa and I went food shopping earlier and for some reason my bones in my feet hurt. I am emailing my doctor immediately. I have fibromyalgia so I do not need that side affect.
I am scared to deal with this medication. This is why I never took lupron!! This is why I never want to take orilissa! I am so nervous! Thank you so much for your reviews! I am nervous. They give these meds to cancer pts. I just got in PA school. I am overly exhausted 24/7 and I just don’t knw what to do 😭 the pain is just getting worse and worse everyday #thissucks
I took my last birth control pill today and I start Orilissa tomorrow. I am so not looking forward to the side effects. Hopefully it works if not it looks like there’s another surgery in my future. Endometriosis sucks!!!
Just began my rx today and took my pill
Praying it helps but I really think I’ll need my ovaries removed too…
i wonder what the long term effects of this drug are...
I just talked to my doctor today about it and she said the long term effect is actually bone density degradation but it is reversible.
Did anyone ever experience swollen hands and continuous hot flashes?
Thanks for doing these videos. I have this pain it’s so bad and I have surgery planned for 3 months out . Doctor wants me to take Orilissa or she gave me the progesterone mini pill . So which is worse ? Is it better just to take nothing just wait ? I get a lot of pain with endometriosis normally with nausea and some constipation and all over place and I eat good and changed my diet too . This is so frustrating. A lot of cramps and pain . Thanks !
Hey love. Which IUD did you end up getting? I was just told I have Endo yesterday & I’m about to get the Liletta IUD next week when my menstrual comes.
I'm taking orlissa and norethindrone together. Not much side effects in tye beginning but my period came on about a month ago and it's been on since. I think it helps with the pain but now I'm experiencing some nausea. I just want to get off everything but endometriosis is kicking my ass. I may go back on b/c junel fe or give my body a full break. I'm just scared I may bleed forever and never stop. This is all just frustrating what we go through.
When you mention liver numbers, are you specifically referring to the alkaline phosphate level in your blood? Thank you!
I have endo. And I started this in December. And what started happening to me is that i broke out here and there on my face. Im still on this medication, however I do still have pain days, that no one would ever know. So it is helping to a point. I dont think anything that they make will ever help 100% . So when i was starting this medication the first month my period was crazy heavy, second month was like it was nothing, third month i got all the symptoms but no period and still going on like this. So now i am, like ahhh noppee not this time i see body.
What surgery' did you have???
How did the IUD work out? I was given the choice of Orilissa, Taytulla or IUD. Im very conflicted because of the bad side effects of all and the issues I experience now and with birth control in the past.
What blood test did u have done
Oh the liver right ? I’m so nervous
When I had surgery my Dr. said I needed a hysterectomy. I did that and the pain is the same.I am scared to start this medication because I do have heart problems aswell.
I had a hysterectomy at 21 due to severe endo. Pain has gotten out of control with almost no bladder function at 26. Was told no more surgeries because I will leave with a bag. Always try and remember that unfortunatly, endo is our life and taking this medication will either help or not and side effects happen. Atleast we can make that go away!
I had a hysterectomy three years ago and the pain never stopped. I kind of just dealt with it until I had bleeding. I was prescribed Orilissa today but it's $1014 sooooo I'm going to continue to deal...
Hi! What surgery did you have?
So the Orilissa didn’t help at all?
How is your life after sx? And life after the higher dose or progesterone ?
Hello, did the orilissa lessen your periods or stop your periods entirely?
lsanchez0202 thanks so much for the question. My periods totally disappeared when I was on this. That is not the case for everyone but it did workout that way for me. You can look at the rates of women that no longer get their cycles on the drugs website.
Hi All! I popped this comment onto the video of 1 Month on Orilissa too, but wanted to post here too, in case it might help someone who just comes onto this video
Just wanted to let you also know about my experience with Orilissa - overall it's been very positive for me. Since many people have found this to be a problem drug for them, I thought I'd share my story, since it may help with some who are worried about at least trialing it.
I'm three months into using Orilissa - the first month or so, I had the occasional hot flash during the day and night sweats most nights. But my energy and mood improved in a way that I haven't felt in years. It completely manages my pain (though I'm having a little bit of breakthrough pain now and again, which only started recently).
Though my mood and pain are in a great place (so my quality of life is excellent!), I do have elevated liver enzymes. My doctors are still investigating whether this is caused by the Orilissa or not. I had terrible nausea for about three weeks that has since improved. This is apparently a very rare side effect, if it is caused by the medication, and has mostly been found to be self-limiting (which means it should go away on its own) so I have not gone off the Orilissa because it has made such a difference to my endo symptoms. (I will post an update if/when I have more information on this)
Previously, I have tried Visanne, CBD, pelvic floor physio - none of these touched the pain or helped with the brain fog for me. Also, I do have a Mirena IUD as well, which I have had since before trialing these other treatments out and still have it while taking Orilissa.
I am taking a lot of precautions around maintaining healthy bones (which is necessary with most medications for endo) - calcium supplement with vit D and resistance exercise two times per week, plus walking daily. I do also have some bloating, but I can live with that compared to daily, intolerable pain. I do also have the occasional day of apathy (I've had two in the last three months).
I hope this helps if you are considering asking your doctor about it or if it has been recommended to you - obviously you may trial it and have a different experience to me, but there is a chance it could really help too. In my opinion, it is worth trying it, if you haven't had any success with other treatments.
(and also, I'd encourage all you endo sufferers to check out www.stuffthatworks.health/ - I'm not associated with this site, but recently found it and it has given me some great insights into what has worked and not worked for lots of other women with endo)
I’m starting tomorrow I’m afraid to take it but oh well...
How are you doing?
@@ebo7310 stopped taking it after 2 months I got worse.
@@pikkigonehippie thanks for the update
What type of surgery did you have?
Laparoscopy
Anyone get bad flu and cold symptoms in orilissa?
Did it at least stop the endo pain ?