Newbie! Has anyone had a reoccurrence of pain following hysterectomy & HRT? Has stopping the HRT been enough?

[Kirstie78]

I am 39 with two children. I had undiagnosed endometriosis possibly from early teens my specialist suspects. I had a full pelvic clearance hysterectomy July 2016 following months of continuous unbearable pain due to stage 3 endometriosis and adenomyosis. I started HRT Nov 2016 which I had to stop 3 weeks ago due to a return of pain, I'm back to a steady stream of hot baths, hot water bottles and painkillers that seem to have little effect. Back to the GP tomorrow, I'm assuming I'll be referred back to the specialist as I've seen no improvement so far, if anything it's worse. Has anyone in a similar situation found that coming off the HRT was enough or could I be looking a more surgery? I'd be really interested in hearing other's experiences. Thank you x

[Hidden]

Did you have the surgery at a bsge centre?

[Kirstie78 in reply to Hidden]

No, it was at our local NHS hospital, it was a rush job as well due to the amount of pain I was in so I suspect that they just did the hysterectomy and didn't remove anything else. Really regretting accepting the HRT but was under the impression the risk was minimal. I've been referred back there today but it was quite a long waiting list last time so no idea when I'll get to see someone or if I'll get to see the person I need to.

[Hidden in reply to Kirstie78]

Can you ask for a referral to a bsge centre instead? My understanding is that general gynae don't always excise all the endo properly when they do a hyst which is why the endo comes back.

[Kirstie78 in reply to Hidden]

Thank you I will look into it. I was told that my specialist was the only one in the dept who would cut it out and waited longer to get to see him but he usually worked with someone else who moves around the country. I was shoe horned into a slot for surgery, which I am extremely grateful for as I was in agony but this makes me believe they didn't excise too. I wish I'd been a bit more on the ball at the follow up! I think I was just relieved that I was no longer bedridden and living on oramorph