Endometriosis

[Cysco]

Hi,I was due to have a hysterectomy with ovary removal due to a large cyst, but they were unable to proceed apart cyst removal due to severe deep infiltrating endometriosis. I have a follow up with the consultant in 6 weeks. I just wondered if anyone had been in the same boat? Thanks

I’m sure someone here must have been in this situation.

Hello and sorry to hear you couldn't have your operation due to endo.

Endo and Adenomyosis here too only discovered at 41 this year and has taken some time to get my head round it.

They may need endometriosis specialist to do the hysterectomy and excise the remaining endometriosis.

A general gynaecologist wouldn't be able to do this as expertly. Depending on where it's infiltrated they may need another specialist for the op.

Mine has infiltrated my bowel I'm waiting for my hysterectomy and excision surgery and colorectal surgeon will be there. Hopefully just to shave it off the bowel.

Thankyou Eileenb , have you been waiting long for your operation? Have they discussed treating it with hormones ? Sorry for all the questions

I've took the decision to pay private for mine. The whole route I've paid private to get my diagnosis unfortunately. Wasn't happy with my gp... and flared up my health anxiety.

The private gynaecologist said it's a 2 year wait for hysterectomy on nhs, god knows what state id be in by then.

Currently on prostap 3 monthly with HRT ad back , I did get that on nhs, op will be 25th Jan at private hospital for op. I have the Adenomyosis so hysto will cure that at least and endo excision help remove that.

Contemplating removing ovaries too as chocolate cyst on both.

Hormones were mentioned but as lots of things are adhered and bowel infiltrated I felt surgery was best for me due to age, painful periods and had my family.

Hoping all this media coverage of endo and adeno and general medical misogyny when it comes to women's health will help things .

I know someone who only received a reasonably rapid diagnosis after paying for private consultation thirty years ago. It’s horrifying to know that things have scarcely improved since then. The papers are full of women having to wait ten years to be taken seriously.