Endometriosis pain - getting worse. - Endometriosis UK

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Endometriosis pain - getting worse.

Jessie-Mae profile image
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Hi,

So, I got diagnosed in October 2014 through a laparoscopy. The pain came back a month after the surgery. Since then, I went on a three month course of Zoladex that stopped my periods, but came with a long list of horrible side-effects, as well as the lingering pelvic pain of endometriosis that didn't quite go (the injections were from March - May). When I finished the treatment, I then tried the Aloe Vera Juice, which I thought was a wonder miracle drug throughout June, with minimal pain. However, in the last three weeks my pain (and periods) have returned with a vengeance. A month ago I went to the hospital for an ultrasound and they didn't find any Endometrial cysts, but the doctors are pretty certain it has spread to my bladder and potentially my bowel. But my next appointment isn't until mid-august.

My pain is now very intense, all across my pelvis, sharp jolts down my groin, and up my back. But it is specifically painful on my right side, around my right ovary, and up the right side of my back around my kidney. How do you know if something is getting worse? I mean, when you know you have endometriosis you accept that you're going to be in pain, but this feels different somehow, and I can't explain it. It feels far more intrusive in a way; deeper, sharper, and much more persistent. I've been bedridden all day, I've taken two zapain, I've had a hot water bottle on my side, and nothing... it's still here and it really hurts. Could this be a sign that the endo is getting worse, or spreading?? I don't know what to do. How do you know whether you should go to the doctor or A&E? I don't want to go there and then be turned away because it's "just your endo".

When I go back to the hospital mid-August, they went to do a cystoscopy or something, to look inside my bladder to see if it's spread to there. I have trouble peeing and balloon out to looking like I'm 3 months pregnant whenever I need to pee, and when I'm desperate, I still can't pee. I have to really squeeze to the point it hurts just to empty my bladder.

I'm just so tired of being "sick" and having this pain. I want a surgery that isn't a hysterectomy or a laparoscopy that will stop my periods, because I think that helped with the zoladex. But I don't want another course of Zoladex because that was vile.

So my questions are:- can intense, deeper feeling pain be a sign the endometriosis is getting worse or spreading? And what are other options surgery wise that might stop the pain?

Sorry for the long email! And thanks to anyone who can help!

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