New here and need friendly advice! - Endometriosis UK

Endometriosis UK

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New here and need friendly advice!

Kez1210 profile image
6 Replies

Hi I'm new to this site..

I got diagnosed a year ago with endometriosis. I had surgery in jan to take some of it away and my consultant told me I had it very close to my Bowles which made it tricky to remove it... I was still suffering with pain so they used the medical induced hormone injection Decapeptyl and hrt. I have had these for 6 months now and not quite feeling myself.... endometriosis pain not too bad but if I need to go to toilet I get the most horrendous pain!! And also sex really hurts!

Anyone else experiencing this?

Kerry x

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Kez1210
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6 Replies
Sellk1 profile image
Sellk1

Hi, sounds similar to me. I kept getting fobbed off and in the end got referred privately. The consultant did an internal and said I would Definetely need surgery and straight away did the ovarian cancer blood test and sent me for an ultra sound and MRI scans. I ended up having a total hysterectomy four weeks ago and am still recovering, but my surgeon told me that I just couldn't have continued as I was for much longer.

Kez1210 profile image
Kez1210 in reply toSellk1

Hope your recovery is going well.

That is what I am wanting. Xx

Starry profile image
Starry

Hey. I had an Endo nodule and adhesions attaching my bowel to my vagina and distorting it which gave me similar symptoms.

I tried zoladex and had a severe adverse reactions. I had it completely excised a month ago at a BSGE specialist Endo centre? Are you being treated in one?

Kez1210 profile image
Kez1210 in reply toStarry

No just our local hospital.

X

Starry profile image
Starry

Your hospital should have transferred you on into a specialist BSGE Endo centre because bowel Endo is considered severe and the BSGE centres operate in multi-disciplinary teams with colorectal surgeons and Endo consultants with advanced excision training, so the best place for complex excision.

This is specified in the NHS contract specification, see page 6.

google.co.uk/url?sa=t&sourc...

The list of Endo centres bsge.org.uk/centre/

If I were you I would ask to be referred over.

Kez1210 profile image
Kez1210 in reply toStarry

Thanks starry x

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