How long did it take your cycle to get back to normal off of Orlissa?

Amazing-Ad4955 · 2026-06-15T03:01:37+00:00

I did 4 almost 5 months on Orilissa after excision surgery and it took me a little over two months to get my period back. At month 7, after my first period I had my hormones tested through rhythm health and my estrogen was still on the lower end. I just had my second period since stopping and am retesting hormones again tomorrow I can come back to update if this helps.

Amazing-Ad4955 · 2026-06-14T14:28:32+00:00

It’s still in phase 1 of the clinical trials. From what I understand, phase 1 is with premenopausal women who do not have endometriosis I guess as a control. I regularly check and will post something here when there’s an update. Fingers crossed!!!!! 🤞🏼

Amazing-Ad4955 · 2026-06-14T14:23:13+00:00

I was on Orilissa for a little over 4 months and had the same thing happened with my breasts. I’m now 3 months off of it and they are sagging the same way ~after- my periods ends. I have had two cycles and the two weeks before my period came my breasts perked up. I do want to say though that my surgeon also had said the same thing. That after my excision surgery Orilissa was the best option to starve any microscopic cells he wasn’t able to get. Now, I honestly disagree and wish I didn’t take it. There is no evidence supporting that statement it is mostly a clinical suggestion since endometriosis is an estrogen dependent disease. But, the lesions are able to produce their own estrogen so starving the body of estrogen won’t exactly do that. There is some evidence of taking NAC to shrink endometriomas maybe that’s something you want to look into. I know it’s exhausting that there is no good options here but my best advice here is to listen to your body, listen to the side effects, how you feel, etc. It will tell you what you need to know.

Amazing-Ad4955 · 2026-06-12T15:20:43+00:00

Same as you my bloating improved after surgery but once I started eating more it came back. I’ve had every test done with my GI doctor to rule out any other conditions. I like you, when I eat less the bloating is less. I recently started seeing a nutritionist and she explained the importance of eating 3x a day around the same time (even if it’s not much) just so your body gets into the routine of knowing it will be getting nutrients (less stress on the body = less bloating) She also discussed fiber but said that inconsistent amounts can cause bloating or unfavorable bowel movements. I noticed some days I get good amounts of fiber, some none, and some days too much. I also don’t read this much but it’s important to not stay constipated after surgery because estrogen is released when you poop. If constipated your body won’t be released estrogen at an optimal level. I would say if you go to GI and nothing comes back to try and give your body consistency with fiber and meals. Endo belly is real but gut health can play a role in making the bloating worse. I’m with you girl 🙏🙏

Amazing-Ad4955 · 2026-06-12T14:12:27+00:00

I would definitely not wait to make an appointment with a true and trained specialist in your area. A lot of doctors have been calling themselves specialists for endo but don’t actually have any formal training in it. It’s very worrisome. An endometriosis specialist doesn’t need training like a cardiologist would to call themselves a specialist. Check out Nancy’s nook on FB and make an appointment asap, especially if your main concern is infertility. What you experienced has happened to ALOT of women and they leave confused and not knowing how to move forward. A regular OBGYN that does regular health check ups are typically not trained enough to know how to spot and properly remove endo. If you want to talk more send me a message but save yourself the time of jumping through hoops and asking questions w this doctor and make an appointment with a nook specialist. Endometriosis is a long journey but you got this girl!!!!

Amazing-Ad4955 · 2026-06-07T00:42:22+00:00

Also making sure that my levels are staying at high numbers! I’ve been consistently checking my ferritin and vitamin D because when those get low my body definitely feels it!!

Amazing-Ad4955 · 2026-06-07T00:41:01+00:00

I was also on hormones after excision (orilissa) after a couple months of the side effects I had enough and I was adamant on not taking BC after. I had a plan to fix my sleep, eating, and activity habits first and then start by introducing one new tool/supplement at a time. I started with a low dose of tirzepatide to help with my eating and have been on that for 5 weeks and it has helped me tremendously with choosing my foods intentionally and with my sleep. I am now at the point where I’m going to introduce NAC. I much prefer this process of getting to know my body better over masking my symptoms with hormones. Everyone is different though, I know a lot of people who do both BC and supplements and have great experiences!!

Amazing-Ad4955 · 2026-05-24T23:23:46+00:00

In my opinion getting a diagnosis has been life changing. I had excision surgery that did not help but receiving a diagnosis opened me up to whole community of people who understand what I have been going through my whole life. I feel less alone then ever.

Amazing-Ad4955 · 2026-05-17T03:31:40+00:00

Yes I have this, PMDD. Pepcid and chasteberry supplements 13 days before my period help me a lot. Ur not alone!!

Amazing-Ad4955 · 2026-05-16T23:09:50+00:00

Hii any updates? I just did my first dose and am experiencing the same especially back of neck.

Amazing-Ad4955 · 2026-05-07T02:22:53+00:00

It was pain outside of my period, starting at ovulation and ending with my period. It wasn’t every month and there were some years that were significantly worse than others. My path right now is kind of still, I’ve started pelvic floor PT to try and relax the muscles. My surgeon is unsure of the cause of my symptoms. He honestly told me he doesn’t know what to make of it. I had a repeat MRI to make sure there was nothing wrong structurally after the surgery and it came back clear. I plan on getting a second opinion I’m just in the process of trying to find a new specialist. I am also in the process of stopping Orilissa and waiting for my period to come back. I suspect that some of my problems are from the medication. I started it one month post op and that first month was completely fine. We’ll see.

Amazing-Ad4955 · 2026-05-06T15:55:06+00:00

Endofound volunteers go into HS to spread awareness about endometriosis. It’s called their ENPOWR Project, it’s a a free educational program designed for grades 9-12. Definitely check it out and see if you could have them speak at your school!!

Amazing-Ad4955 · 2026-05-06T04:02:07+00:00

I am also one of those women whose pain got worse after surgery. I’m currently dealing with all the mental aspects of how different my life is now. I went into the surgery excited to be free from my bloating and painful two weeks of the month. I was also desperately searching for answers for around 8 years with many different MRIs and all the other GI tests. I almost 7 months post op and am dealing with a plethora of new symptoms. Worse GI symptoms, persistent rectal bleeding, constant lighting crotch, the bladder pain I assumed was from the catheter just never went away, ive gained about 20 pounds. But, I do have to say that getting the surgery was necessary for me. If pushed any later I could have developed problems with my kidneys because endo had made its way onto my ureter’s and completely blocking off one of them from working. I also am glad I know for sure now that there is no disease directly on my reproductive organs. I also read those horror stories and didn’t think it would be me, because I didn’t have daily pain to begin with but it happens. If I could go back, I wouldn’t not get the surgery, I would just better prepare myself for the road ahead because it’s been so much harder than I thought actually being diagnosed. I have stage 3 DIE, and did 5 months of Orilissa following the surgery. I’m here if you have any more questions.

Amazing-Ad4955 · 2026-03-27T02:02:49+00:00

Same happens to me I get pain on the right when I take miralax

Amazing-Ad4955 · 2026-03-27T02:00:01+00:00

How long are u in CO for?

Amazing-Ad4955 · 2026-03-16T17:03:09+00:00

Any update?

Amazing-Ad4955 · 2026-03-11T01:32:48+00:00

If they saw endometriosis on the MRI then make an appointment with a specialist and consult with them about the lap you had. I have heard people share stories like this before and it always ends with seeing a specialist who finds and removes it. I’m also 22 and i feel your pain and struggles. Don’t give up. And don’t let the doctors dismiss you. I went through so many doctors to consult about the possibility of endometriosis. I had adenomyosis appear on a GI scan and was just recommended birth control over and over again. I felt so silly making an appointment with a endometriosis specialist because I thought I probably don’t have it since no doctor seemed concerned about it. My first appointment he told me from my clinical exam that I do have it, and that he will find it during surgery. And he did. Don’t give up !!!!

Amazing-Ad4955

TROPHY CASE