Undiagnosed Endometriosis from lap and Or... - Endometriosis UK

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Undiagnosed Endometriosis from lap and Orilissa. Do I have endo?

SharkGirl profile image
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Hi all, I recently had a laparoscopy with my OBGYN that left me without answers. He said that I had blisters/possible endometriosis on my ovary, but it didn't explain my pain. Since then I've had my case looked over by a specialist who said that I probably have stage one endometriosis. He also wanted to do a laparoscopy but I have yet to schedule one, due to other health issues that may also require surgery (bum ankle from kickboxing.) The specialist said that my OBGYN didn't look for bowel endo the correct way and that he would be able to find 25% more of the endo. I also have undiagnosed ICS and have been on elmiron for it.

Anyways, I don't have any solid answers. For months I was on Cymbalta (before my lap) and it helped with the painful pelvic pain, but the side effects weren't worth it so I went off of it completly about a month ago. At this time I also stopped skipping my periods with birth control and completly stopped using the birth control (doctor's orders.) In lieu, I started taking Orilissa. I took Orilissa for a month after stopping the antidepressants and birth control. It seemed to work, but I wanted to get clean of medication entirely so I stopped taking the Orilissa. Two weeks later I got the period from Hell. Dante's Inferno level of hell. I woke up to heavy bleeding and my ovaries were in a sword fight with each other. Or maybe they were nuking each other with atomic bombs, it could have been either one honestly. I took three 500 mg midols within six hours and it did absolutely nothing for my pain. It is safe to say that this was the worst period I've had in months.. since before starting the antidepressants and skipping of my periods with BC. I immediately picked up Orilissa from my pharmacist and started taking it again that day. Within 24 hours the pain was manageable. In retrospect, Orilissa has worked the best for me. Especially with bloating....

So my question is, has anyone else been through this? I do believe that I have endo. I just think that the OBGYN didn't find it. I don't think that i have adenomysis but I'm not a doc so who knows. I think that since Orilissa works for me, that this is a major clue to my diagnosis.

Here are my symptoms, would love to hear some thoughts on other people's experiences:

- gluten intolerance

- endo belly bloating/looking prego for no reason

- chronic constipation

- negative colonoscopy for any issues

- a lap with very little answers

- ovaries on fire during period and ovulation

- pelvic monsters at war during period and ovulation

- pain with sex, i.e. pain lingers for hours after sex and advil is needed

- lower back pain, i.e. some ghost keeps using my lower back as boxing practice

- painful gas that smells like a marsh at low tide

- other reproductive issues that have been linked to endo (caused by)

- sometimes when I poop I think my ovary is beeing stabbed by a Samuri

- sometimes when I poop my vaginanal walls pretend to fall out

- midol doesn't work

- Mood swings from hell

- Orilissa and a gluten free diet works to relieve my issues.

Help?

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SharkGirl
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ALJ780 profile image
ALJ780

I'm going through this right now, actually! It's almost as if i am reading my own words! I start Orlissa this month. My endo was missed by general OBGYN - it is highly likely that it is there but simply overlooked. I see a specialist for a second opinion consultation soon - based on his opinion, my photos, and my research even I can see some endo lesions that were totally missed. The surgeon completely disregarded my bowels, rectum and vagina while searching for endo :( it was like he was mainly focused on checking if by tubes were blocked.

I appreciate your descriptions of the endo pain- I only laugh because I can relate!! if I don't laugh I will just cry all the time. I hope we find some relief and the answers we deserve :)

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