Endometriosis UK
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Confused and would like answers :(


Quick bio: I'm 29 y/o. Diagnosed with PCOS at 18 and most recently endometriosis. A typical "episode" — the morning of my period — is the most excruciating pain in my lower abdominal area. I've blacked out, thrown up and it severely affects my bowels. I'm on tablets to help the pain so once i've taken a tablet, it takes a good 45 mins to kick in. And then it stops/settles.

Dec '15 was my last period. I haven't had one since. What I have had is 2 "episodes" — one end of Jan, one this morning. But no period following it which is unusual. And it's worrying me.

Doctors are clueless. Took this long to get an actual indication of what was wrong, and they don't seem to provide answers. They've suggested a coil to help with the heaviness but what I want to know is that is this AWFUL pain. Does anyone else get it? How do you manage it? Will it ever go away? What causes it?

When I was on the pill this didn't happen. So I'm contemplating going back on and just setting aside the side-effects I get and celebrate not having the pain.

If this sounds familar, would be great to hear about it as I'm feeling very alone.

1 Reply

Hi Rosie, sorry to hear you're suffering. Painful (really, really painful!) periods are normal for Endo but blacking out and throwing up isn't. Have the doctors looked for ovarian chocolate cysts? They're particular to Endo. I've suffered from a burst chocolate cyst a couple of times and although both episodes were 20 years apart, I recognised the pain instantly the second time around - agonising pain in my abdomen like a knife slicing through it, nausea and fainting. I was rushed to hospital where they found and removed a chocolate cyst that was attached to my ovary.

I went on the pill after my first episode and that helped for several years until I stopped to try for a family. So it might benefit you to go back on the pill.

The best thing to do is to research your options (what pill? What other treatments are there?) and arm yourself with information to take to the doctors. You're the expert where your body is concerned, the doctors should be there to facilitate your treatment.

Good luck, I hope you find a solution!

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