Pelvic pain back 3 months after Hysterectomy

[Mindfullness4791]

I have had significant pelvic pain with bowel and bladder issues for 2.5 years. It was hard to get a diagnosis. I was told at first it was a bowel issue, then Endometriosis/Adenomyosis and was eventually diagnosed with 4 fibroids, 1 being 7cm. A year ago, I was put on Prostap and add back hrt. The Prostap helped initially but once I added the hrt, my pain levels rsmped up massively and I was in some sort of flare. I eventually stopped the hrt and the pain did decline a bit.

I eventually had a hysterectomy 12 weeks ago. Initially, the pain went straight away. It has been amazing. However, as I had my ovaries removed, my menopausal symptoms were awful. I started hrt a few weeks ago and now the original pain is back and feel exactly like it did last year when I was on hrt. I am wondering if I do have Endometriosis and it has been missed, as what ever this is seems to react to Estrogen.

I am devastated and just don't know what to do next 🥺

[Keke123]

I was told that endometriosis has its own source of hormones so if any is left then it can basically keep itself growing and that’s why symptoms come back after

Have you been taking pagesterone to keep the endo at bay? I have had a hysterectomy and I’m on oestrogen and pagesterone (I think I’m spelling it wrong)

[Mindfullness4791 in reply to Keke123]

That is interesting about having its own supply. They said I haven't got endo but my laparoscopy was a joke. Even my 4 fibroids were missed. 1 being 7cm!!I'm on Estrogen gel only x

[Keke123 in reply to Mindfullness4791]

Yeah I have have endo since 14 (now 33) and I only just got told that by my specialist before my op.

I would definitely add for a hrt to stop the endo growth, sounds like you’ve not had the best sort of treatment if they have only given you the gel! I’m on that too and utrogestan. Go to your gp and enquire if you can at least try it?

[Marcia71]

if you get full copy of op notes it may say if endo was seen at hysterectomy. You can apply for free to the subject access request team at the hospital.

Also you should have been given combined continuous HRT - oestrogen and progesterone all the time - as that’s needed for best chance of endo not reactivating. I appreciate you haven’t had a formal diagnosis. It even if suspected you should have been given combined.

[Mindfullness4791 in reply to Marcia71]

Thank you. I have had the op reports and they didn't see any endo x

[Marcia71 in reply to Mindfullness4791]

Just be aware they may not have seen any endo as may have been beneath surface (deep endo) or they weren’t trained enough to spot it. Happens far too often unfortunately.