Incredibly wide spread endo - need good news stories!

[IndominusRex]

Had my second lap yesterday and it wasn’t great. Endo spread to diaphragm/possibly lower lungs. Ovaries completely stuck to bowel and bladder. Specialist said he’d only seen it like that a couple of times.
I’m at a loss what to do really. The thought of multiple, extensive surgeries and the risks and complications is really getting to me.
Has anyone else been through this?

I had a procedure to remove a nodule, get rid of miscellaneous bits of endo around my womb and ovaries and a huge piece between my vagina and rectum that was causing problems. I also needed my right ovary unsticking from where it had adhered to my body. Not as extensive as yours, but the surgeons did say that it was quite severe.

Aside from having to wait almost three years for the operation (pre-Covid), I had no trouble whatsoever. They gave me an operation and I was home the next day.

The only problem is now, because of the pandemic, aftercare was more or less dropped and my rectal endometriosis is back again.

What outcome do you want? Do you need to preserve fertility? Or keep your ovaries to avoid HRT requirements?

I have the most severe stage of Endo. I gave up on TTC DC2 and went on cerazette and have been on it continuously for over 10 years. The only episode of pain I've had is when they changed me from Cerazette to an allegedly identical generic pill. I now pay for my own Cerazette prescription through Lloyds - it's £30
For 6 months.

@Honeysuckle I basically don’t want an early menopause and ideally don’t want a stoma, even temporary. And to get rid of my pain. No plans to conceive.