Rectovaginal Endometriosis found during hysterectomy and I'm getting the symptoms again

[Lizziedrizz]

I had to have a hysterectomy in March this year at Poole Hospital, Dorset, as I had a fibroid that couldn't be removed with less invasive surgery so hysterectomy was my only option. Since the hysterectomy eventhough my ovaries weren't removed, I am now perimenopausal and on HRT gel and progesterone.The fibroid had caused alot of problems for a couple of yeats before my hysterectomy, with bleeding which included really gross clots and spotting between my periods and alot of pain.

The surgeon who did my hysterectomy is an endo specilist as well and he found that I have rectovaginal endo but for some reason and I'm still waiting to find out why, he didn't tell me before I was discharged that I had endo. I found that out myself several months after my hysterectomy when I read the discharge letter my surgeon sent to my GP which was only available to read through my online medical records on NHS app. As he found the endo during the surgery, it was his responsibility to tell me himself before I was discharged and for him to make a post op appointment for me to see him a few weeks later.

During the hysterectomy my surgeon said that he had to excise the endo from around my urethras, my anus and vagina which I had hoped would be the end of it but the same kind of symptoms that I had before my hysterectomy which I just thought were due to the fibroid, started up again about 3 months after my hysterectomy.

The symptoms are pelvic pain mainly on my righthand side, very intense pain all the way down my groin when I need to poop and my bladder at times doesn't tell me that I need to pee so when I do go, I find that I have a very full bladder. I don't get these symptoms all the time which really doesn't help but my GP believed me when I explained all the symptoms and due to the complete lack of information from my surgeon about the endo, I now have an appointment with my surgeon in Januaty 2025

[Marcia71]

unfortunately it does sound like endo wasn’t fully excised at hysterectomy. It also sounds like you may have had adenomyosis- was the uterus tested after removal?

I would definitely apply for all your notes from the hospital - it’s called a subject access request and it’s free to do and they have 28 days to reply. It sounds like you consultant should have actually stopped op and referred you onto the bsge endo specialist centre as they have the multi disciplinary team there needed to treat such a complex case. But your gp can now refer you directly to the centre if you get your notes that show where the rectovaginal endo is.

[Lizziedrizz in reply to Marcia71]

My surgeon is the head consultant surgeon for my local bsge endo specialist centre and at the moment I have no idea at the moment if anything was tested after removal

[Marcia71 in reply to Lizziedrizz]

I'd definitely apply for all your notes - it's free to do and they have to reply within 28 days. It is called a subject access request and hospitals have to have details on their website how to do one. If you need more help do drop me a message and I'll try my best to help.