It's back!: After twelve clear years... - Endometriosis UK

Endometriosis UK

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It's back!

Angie104 profile image
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After twelve clear years following a hysterectomy I have recently been diagnosed with having a return of the big E! This was never in my mind or part of the plan. I have one ovary remaining and now face the option of more surgery, the dreadful injections or drug therapy at the age of 45. Knowing how hard this was in my late twenties and early thirties and how I suffered terribly with the side effects I find myself very frightened of having to go through this again and really overwhelmed by it all. Is there anyone out there who gas experienced anything similar I'm sure I am not the only one.

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Angie104 profile image
Angie104
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Impatient profile image
Impatient

You don't need GnRH drugs, but you could benefit from having an expert endo surgeon do a decent job of removing all the existing remaining endo. That should be enough to tied you over till you naturally menopause with that remaining ovary.

There are now an increasing number of accredited endo clinics around the UK and I would strongly urge you to look at the list, find your nearest endo centre, write down the details and ask your GP to refer you to it. Some parts of the UK are much better served than others, but the point is that these endo centres, have endo specialist gynaecologists, urologists and colorectal surgeons on their teams, dedicated endo nurses, and pain specialists too.

Much much better than just being referred to a standard obstetric gynaecologist who in all probablity is the kind that did your previous hysterectomy leaving some remaining endo deposits in the body which have now spread.

bsge.org.uk/ec-BSGE-accredi... lists all the accredited centres (just check the one you choose is NHS, as a couple on the list are private ones you'd have to pay to use.)

Hope the surgery is as successful as it can be, it's a hopeful sign that you did have a long run free of endo probs and pains up to now.

Angie104 profile image
Angie104 in reply to Impatient

Thank you for that information, it seems things have improved greatly in twelve years, many thanks.

Lettie profile image
Lettie

Hi Angie....... I'm ten years to your twelve.....your story is like your talking about me... It mirrors mine from the hysterectomy to one ovary left and injections and drugs....I'm 45 too.... I'm overwhelmed too and to be honest a little scared.. I had my head in the sand for eight months with the pain and I couldn't take it anymore so i plucked up the courage to go back to my consultant..... Now it all begins again.... Hang in there cause I'm trying to.... It made me smile to read your story so I hope mine brings a smile to you too......Take care Colette x

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