Suffering: I was originally diagnosed with... - Endometriosis UK

Endometriosis UK

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Suffering

ktbug31690 profile image
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I was originally diagnosed with PCOS, which I might still have since I do get ovarian cysts, but now my doctor is saying based on my symptoms that I probably have endometriosis. I haven't had a laparoscopy yet. I'll have to wait until I get home for that to happen. I am currently in the U.K. for grad school. I don't have any family here, so I don't have my usual support system and everyone at home is 6 hours behind, including my gyno. I'm really just looking for support. The pain is so intense when it hits and it's happening more and more frequently. It can be so intense that the only release of pressure is throwing up. Is there anything besides surgery that really helps?

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ktbug31690
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Starry profile image
Starry

Big hugs. Its horrible to be away from home and ill.

Some people do have success with hormone treatments like mirena, or zoladex, but everyone has a unique physiology and there are different types of endo too some of which are hormone resistant. It's a case of trial and error finding what works.

For me, I had a severe grade 4 hormone resistant nodule forming endo and the only viable treatment ended up being surgery as my bowel integrity was at risk. But surgery also has risks and potential side effects or complications. I've been a bit unlucky with post op complications so for me it has not been easy so isn't always a quick fix that sometimes it is presented as.

Pain management wise it depends on the cause of the pain. I'm post excision so mine is largely what is called functional pain ( with no pathological cause but due to a software fault in the pain messaging system which can happen in cases of chronic pain) I'm on pregabalin which seems to be helping that.

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