Emmyeve

Did you have excision of the existing endo when you had your hysterectomy?

Hidden in reply to Emmyeve

The surgery would have been too extensive to remove all cell. The attitude was that once the oestrogen was gone the endo cells would go to sleep!

I don't think they did!

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Emmyeve in reply to Hidden

It’s my understanding that endo has it’s own oestrogen supply (without the ovaries once endo has established) if it wasn’t excised then potentially would continue to grow which is why it should be excised at the same time as hysterectomy.

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Hidden in reply to Emmyeve

Thanks, but they could not have got it all. I had it in my diaphram, eyes, spine, muscles.....everywhere!

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Gwen172

Hi, I am similar to you. Hysterectomy 24years ago. Put on hrt for 20years. Got worse pain now than I had before. Have been to BSGE centre this week and am waiting for mri. Have you had excision? Think that is the next step for me. Just wanted to wish you well and say you are not alone. I have learnt so much from this group. X

Hidden in reply to Gwen172

Thanks for mind wishes. I worry that it's all too late. Pain is increasing daily and doctors don't care.

If it is cancer, I am riddled!

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motleymummy

Hi...I wasn't actually properly diagnosed with Endo until they opened me up to do the Full Hysterectomy(I already knew this myself but my consultant wouldn't test for it as I already had kids and my womb "wasn't needed anymore"!)

What I did find out 18 months down the line when I started bleeding again was that in certain cases the Endo can return..and the "cure" was to stop taking the HRT that I was supposed to take until I was 56(had the Hydro at 40)

This did in fact work...it stopped but I then started having severe pains similar to an appendix so was admitted to hospital for 2 days of tests(MRI/CT scans..all proving nothing)

4 years later they finally diagnose me with Fibromyalgia..not sure if it's connected?

Hope you get the answers you need soon x

Hidden in reply to motleymummy

Fibromyalgia is such a problem.

Endo never goes away, is provable and holds many myths. Personally, I think that continuing endo is so similar to check that differential diagnosis is impossible.

Be brave and understand that endo is a very real provable illness.

Fibromyalgia is considered with scepticism unfortunately and wrongly.

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PJK2205

hi, I had a hysterectomy about 9 years ago for endo and am sure it has returned, getting those griping pains again and also spotting, which does concern me. as far as I'm aware there's no link to endo and cancer. I know I didn't have all my endo cells excised as it was quite wide spread so would have meant a full laparotomy, which in itself could have caused more problems..... I still have one ovary which is my main concern.. like you the issue of cancer niggles my mind at times. I just keep going to my doctor from time to time and getting scans done... Just keep being persistent until you're satisfied. xx

Hidden in reply to PJK2205

Hi there

I would get that remaining ovary removed and go on net for a transitional period.

However, I am a nurse and can't give you medical advice.

Good luck x

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Hidden in reply to Hidden

HRT not net!

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PJK2205

I've tried numerous HRT and not found any that suit me. They all turn me into a total psycho. lol.