In agony: Hello all, I wonder if anyone... - Endometriosis UK

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In agony

JessAH profile image
3 Replies

Hello all,

I wonder if anyone could offer any advice please? I've been having endo symptoms since I was 13 (10 years ago) all of which are getting worse. The pill helped for two years but now I am in pain everyday. My recently laparoscopy saw nothing, but for the last year and a half I have been getting heavy recital bleeding only during my period (colonoscopy showed nothing and was done while the bleeding was starting). In the last three weeks I have been having constant pain in my lower abdomen, along with back pain and pain spreading to my legs. I have on and off foul smelling urine (no pain associated with going) along with a constant feeling like I need to have a BM. In the last two days my pain is to the point where I want to throw up and am finding it hard to catch my breath, the pain is even in my kidney area on the left hand side. I'm currently on holiday in a small village in Italy and I'm worried. I don't know whether this is associated to endo or is something else?

Any advice please!

My GP has referred me to another specialist as they are still convinced the Dr who did my lap didn't see anything

Thank you and hope you're all well xx

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JessAH profile image
JessAH
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3 Replies
Tia1991 profile image
Tia1991

Hi there I'm 26 and for 12 years I've had severe pain everyday I was diagnosed with endo in 2014 I had operations to remove it and now on the prostap injection I went about 3 months with no pain then it all come back and apart from the rectal bleeding everything the you have stated above is what I get. I've been for a scan and as they didn't see anything they told me it is in my head calling me crazy basically. I would push for another laparoscopy as it does sound like endo but I'm not defo as I'm in the exact pain and apparently all my end has gone. If you look on my other post the last one I did is asking if anyone knows what the pain could be there is a few suggestions on there.

Hope you get the help you need keep us informed

Take care xx

JessAH profile image
JessAH in reply to Tia1991

Thank you so much for your response. Hopefully my gp's referral has gone through. There is nothing else that it could be anymore. I've had 8 opinions and all say my bleeding can only be from endo, it's just so frustrating!

Annoyingly too, this bout of severe pain led me to go to the A&E here in Italy whilst on holiday. Turns out I had a severe UTI and kidney stones. This is after I kept getting told that I didn't get uti's and to just get on with it!

So fed up with doctors now! At least at this A&E they were very kind and made you feel like you weren't insane for once!

Xx

Starry profile image
Starry

Given your rectal symptoms if your first lap was in general gynae then make sure the new referral is to a BSGE accredited specialist Endo centre. General surgeons can quite often miss Endo as they are not specialist enough.

bsge.org.uk/centre/

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