Deep infiltrating endometriosis - Endometriosis UK

Endometriosis UK

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Deep infiltrating endometriosis

Fr0mby01 profile image

Hi all,

This is the first time I've written on here. I am 51 and have been suffering with various problems since I was 13 - ibs , muscle aches, abdomen pain awful fatigue and headaches.

I am relieved as I finally have a diagnosis after years of feeling like I was making everything up.

Had laparoscopy and hysteroscopy yesterday and was diagnosed with deep infiltrating endometriosis of both uterosacral ligaments in the peritoneum. I am so relieved to have a diagnosis after nearly 40 years but also feeling daunted as I hadn't heard of this before. Can anyone help me with what this is and does anyone have any tips or advise.? I'm not sure what is happening with me yet as the surgeon came to see me when I was coming round from the operation and feeling groggy.

Thank you for any help and good luck to all you fellow sufferers.

Rachell x

1 Reply

Ah its such a relief to be finally diagnosed, then really scary as you now have decisions to make about your treatment.

Deep infiltrating endo means its in the surrounding tissues/organs not on them. The uterosacral ligaments hold your uterus up.

Endometriosis UK have a helpline, they can talk you through the diagnosis, and us ladies can help with the questions you have, recovery etc.

I had deep infiltrating endo, stage 4, with my ovaries stuck together (kissing ovaries) they were stuck to my uterus, which was stuck to my bowel, that was stuck to my back. Left ovary had a chocolate cyst.

I had a total hysterectomy and endo excision 8 weeks ago, and was definitely the right choice for me.

I suggest you speak to Endo UK then read up on your options so next time you see your consultant you have a list of questions for him/her. Was the consultant BSGE (endo specialist)?

In the meantime, rest a lot and have peppermint tea to get rid of the gas and walk as much s you can

big hugs xxxx

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