next steps

[KTe23]

hi, I have recently been diagnosed with grade 4 endo. I was today told even surgery won’t help and even if choose it it’s an 18 month wait and major surgery. One of the medical options is the analogue injections, potentially with hrt. Can anyone offer me any advice or experience from their own journeys?

[Fizzypoptastic]

Hi there,

I’ve just turned 43 & I was diagnosed with stage 2/3 endo in 2021 (now stage 4). They also said I was borderline adeno.

I initially agreed to go on the Mirena & decided against surgery but asked to be put on the waiting list for surgery later on.

The specialist nurses even suggested hysterectomy at the initial stages of diagnosis which I was a bit shocked about.

I finally had surgery on 07.03.23 & am so glad I did as the 2cm endometrioma had grown to 10cm & my endo had progressed to stage 4 (deep endo).

There is no harm in being added to the waiting list for surgery. They write to you closer to the time & ask whether you still want to stay on the waiting list or not.

Good luck with your treatment journey xx

[girli1111]

I’d want a second opinion. I was diagnosed with grade 4 deep infiltrating endometriosis. Unfortunately I did eventually need to have both ovaries removed, two years apart, because of endometrioma damage and one being engulfed with a large dermoid cyst BUT the EXCISION surgery performed the second time, (as opposed to the ablation first time) was life changing for me. The surgeon suspected I’d have recurrence because of some endo which she said had likely penetrated my bowels, but, fingers crossed I’m now six years on from my last surgery and free of endo symptoms. I should add that I was on the injections between the two surgeries, and it just stopped the second endometrioma enlarging further. I’ve been on hrt since my second ovary was removed, and I still have my uterus. Good luck

[Hidden]

I don't know a lot about this but I do know a gynecologist that shared that she thinks she has endometriosis and she is taking some medication to stop her period. This will prevent endometriosis to grow. I am planning to do this too but first I need to get pregnant so I cannot take the pills right now .