I had a hysterectomy in April out of despair with my GP's refusal to believe that there was anything wrong with me bar a few fibroids and my own conclusion that I wanted to get someone to open me up and look. My GP had little or no knowledge of endo and switched off every time I mentioned that I had looked up my symptoms on the web and saw huge similarities with the IBS and bowel movements and chronic night pain.
Low and behold full endometriosis was found and the general Gynae consultant performed the following: Total laparoscopic hysterectomy and bilateral salpingoophorectomy BSO and ureterolysis and division of rectovaginal adhesiolysis. He said my pelvis was covered and tethered from descending colon to the posterior part of the uterus with bilateral endo nodules. To be very crude, I couldn’t eat or go to the loo during menstruation as it was so painful.
I was shocked at the outcome and the removal of everything including cervix, they left only my vagina stitched at the top in a sheath. I was then told no HRT for a year, given a follow appointment, shown some photos and signed off after 6 weeks. Job done!
I have had 3 UTI's and back pain but these have passed thankfully. But I am now left with my original side pain and chronic bowel pain, a new thigh pain and the occasional limp if the side pain is bad. I hurt mainly at night and on one side. If I can't sleep from pain then I am awake with my new full on night sweats and medical menopause symptoms. i have magnets and potions and menopace but none seem to help the sweats or insomnia.
So, I went to the GP this morning to ask about finally referring me to an Endometriosis Centre as I was sure my case should not be closed and that at the very least the no HRT for a year rule is possibly misguided. I have noticed many women on this site are on HRT after hysterectomy for endo.
My GP said I was very unlikely to get through a referral to this BSGE clinic (he had never heard of one) from the CCGs as budgets are tight and he could prescribe a diabetes drug Metformin for my night sweats and Mebeverine for my bowel to relax it and lessen the pain. I am tired and I cried at his ignorance.
I just want what some other women with my condition have managed to request - a specialist to look at my case. I am near the end of tether (pardon the pun).
I phoned a BSGE clinic myself today after my GP appointment and described my experience from start 14 years ago until today and was told they would not have performed the above operation without having a bowel specialist involved. The consultants PA was wonderful and suggested I go back to my GP and explain that a huge number of women are successfully referred every week for much less and I should persist.
I am assuming not all my endometriosis has been removed and the procedure I have had done should not have gone ahead in a general hospital.
Please any ideas how I can get my GP who hasn't heard of a BSGE clinic, he thought was some cowboy outfit out to make money, to refer me to one? Or does anyone in my area (Epsom) have a wonderful GP who knows about Endometriosis and the pain it causes and would PM me their contact details so I can change GP.
My other option is to pay for a private appointment and then request a strong letter to go to my GP insisting I am referred. Any ideas welcome.
Apologies for the ramble and nonsense, I cannot think or string a sentence together anymore let alone write.