Total LAVH hysterectomy with adhesiolysis - still in pain

Hi. I hope someone can help me. I had decades of pelvic pain which was helped by my taking the combined pill in my 20s (not allowed it post 30 due to migraines....). I had several pelvic ultrasound scans which didn't show anything untoward and a laparoscopy in 2007 which showed no signs of endometriosis but did show a few adhesions on the left side, which were removed. I have also had barium studies and endoscopies as I always suffered from constipation when I had my period. All these have come back clear. I tried the Mirena device which was unsuccessful, and later on Cerazette, which was also unsuccessful. Both of them caused me to have continual light bleeds and with considerable pain. I think I am intolerant of progesterone as I did have bad PMS. I have prayed for menopause!

Last year, aged 50 and with worsening pain (2.5 weeks of every month) and no sign of the menopause, I was put on Zoladex for 6 months to determine if I would be a suitable candidate for hysterectomy and bi-lateral salpingo oopherectomy. Within 3 days I was pain-free. During a follow up appointment the doctor smiled and stated that she thought I probably had adenomyosis and sheduled me in for a total LAVH with bi-lateral salpingo oopherectomy. I underwent my surgery on 17th February and the surgeon (not part of the specialist endometriosis team) was shocked to discover that I had Stage 4 endometriosis with a frozen pelvis on the left side (my womb was stuck to my ureter, sigmoiod colon and left pelvic wall). My surgery was 3 hours, and involved some removal of the endometriosis and adhesions and I was left in extreme pain afterwards - it took a while for them to get on top of it post surgery (thankfully I have no memory of that although I was in recovery for 3 hours.) I have subsequently informed myself about endometriosis and am fairly sure that my surgeon did not get it all out and that without specialist care, adhesions are likely to grow back and my endometriosis might 're-activate' too. I have not yet received my letter and histology report from the hospital. I have not started HRT yet although I have been told to go ahead and take it. I was diagnosed with osteopenia whilst still menstruating so that is a major concern for me going forward.

As seems to be typical with the NHS, I was not given much guidance as to how much pain I should expect post surgery. I was given 5 days worth of codeine phosphate and told to take ibuprofen. Apparently I won't be offered a follow up as a matter of routine - unless there are concerns or further treatment required (or if I ask for one, which I shall). I seem to be having more pain as time goes on. Last night I woke up in pain. I have pelvic pain (deep, sickening pain - not to do with the scars) and now lower back pain. I have been cuddling my hot water bottle 24/7. After the 6 months of respite on Zoladex this is making me very concerned and low. It's bringing back bad memories! I am keeping my bowels open, drinking lots of water an am walking for 20-30 minutes each day as well as getting a lot of rest.

I live in a remote area and am on my own for 12 hours per day. There is a lack of information and support out there from the medical profession. I am fairly sure that if I went to my GP to discuss pain, she would tell me that 26 days post-op is too soon to tell whether my endometriosis had returned.

Sorry for the long post. I am just reaching out to the community to see if there is anyone who has had my experience and can reassure me?

Thank you

Julie-Liza.

[JeanOsborne]

Hi Julie, I'm really sorry for what you have gone through. If you are stage 4 endo you should only be treated by a specialist. Have a look on the BSGE website and find one near you. Armed with this info go back to GP and get a referral to them. Whilst I agree it is a bit early to know for sure , the chances are that endo has been missed, which unfortunately happens a lot with general gynaecologists. This a great site for support and advice. Lindle on here is amazing might be worth searching her name on here and message her regarding all this . She will be able to offer much more help than I can. I've just had an abdominal hysterectomy ( for adenomyosis) with removal of both tubes and ovaries as well as excision on 3rd March. My bowel and uteras were stuck to uterus. So I know exactly how you feel at the moment. I personally would hold off on the hrt until you spoken to a specialist and are sure all endo was removed. Good luck and keep us updated.

[Hidden in reply to JeanOsborne]

Thanks so much Jean. That really helps. There is a BSGE unit at the hospital where I had my surgery and the man who now heads it up carried out my laparoscopy in 2007....So it's a shame I was only diagnosed in theatre by a general gynaecologist. I will ask to be referred to him as I do have questions. I think I may have had adenomyosis as well - which would fit with severe pains from the age of 40 but with no sign of endo. Thanks again for reaching out. I will try to message Lindle.

[JeanOsborne in reply to Hidden]

Good luck Julie. I'm here if you need to talk.

[Hidden in reply to JeanOsborne]

Thanks so much Jean