No endometrioma

[Kittymama95]

I had an endometrioma diagnosed in 2021 and drained in laproscopy in 2022. Diagnosed with endometriosis only during the lap - on bowel, bladder and pouch of Douglas- it was not removed during the op. All was fine with endometrioma drainage.

Fast forward 2025 the same pain has returned as when endometrioma was diagnosed maybe worse. I have had two US and TV scans both have claimed no endometrioma and no endometriosis observed and referred back to GP. GP has referred to gyne but says it may get rejected due to suboptimal scans. I am in agony... what is my next step? There is 100% something wrong. The pain is unbearable.

[Anon135]

hi Kitty,

Sorry to hear of your pain. If you were already diagnosed with endometriosis on bowel, bladder and pouch of Douglas then isn’t it clear to your medics that you have endo, you’re having a flare up and you need more treatment? Can you remind them that not all types of endo shows on scans (have deep infiltrating stage 3 - on bowel bladder and all of my left tubes and ovary need to be removed diagnosed at lap but not shown on US or MRI).

If you have the previous lap diagnosis written have the confidence to push that you need treatment.

This might be the wrong advice but I’m having gnrh / hrt (zoladex, tibolone) and it’s easing my symptoms whilst I wait for my next surgery. Also in terms of painkillers, I found that ibopreufen, Mefenamic acid nor naproxen helped - but it was easy to get those from GP if you haven’t already tried getting that from them. I found that a combo of paracetamol and/or cocodomol (over the counter) helped me manage my pain symptoms more successfully.

Do push for some sort of treatment in the short term for your pain from the GP. Try different things and see what works. I know it’s a journey. And in the meanwhile I think it’s in our rights to be referred to specialists we chose. You could find an endo surgeon and request a referral to them specifically - it may take 1-2 years but it would mean that you are on the step to seeing someone who WILL take you seriously in the long term.

Ellie