Worried: Diagnosed with endometriosis 2... - Endometriosis UK

Endometriosis UK

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Diagnosed with endometriosis 28 years ago. Told that the cells were,

"All over my body."

Had full hysterectomy and was placed on HRT for twenty years.

I have continued to have aches and pains but just had each problem investigated when needed.

However, I have been concerned that the endometrial cells, though dormant, might turn cancerous.

Recently I have had a continuing pain in my lower left groin. What are the chances that these,

"Rogue cells,"

might have turned malignant?

Can anyone help me as the pain is now as bad and similar in nature to when I had the active disease.

Thank You

12 Replies

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

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!

Emmyeve profile image
Emmyeve in reply to

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.

in reply to Emmyeve

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

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

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!

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

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.

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

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

in reply to

HRT not net!

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

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