Post hysterectomy nightmare! How do I get my GP to listen and refer me to someone who knows about endometriosis and any ongoing issues

[Mcfw]

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.

[Tracey29]

Hi

Gosh you have certainly been through a lot and how distressing your GP doesn't understand your symptoms

I live in epsom well just outside and although my GP not been a key person in my treatment I can recommend a private consultant should you decide to go down that route

If you need more info I'm happy to message you the private consultant details

[Mcfw in reply to Tracey29]

Thanks Tracey

I have a phone appointment with a GP at my surgery this morning. I requested one of the more receptive doctors. I have a feeling this call with result in make or break with that surgery.

I will then book a private appointment with the Ashford St Peters clinic as it's my nearest and they were wonderful yesterday on the phone. They suggested they could request my hospital and operation notes and photographs and then write a letter back to my NHS GP to say whether or not I need a referral back to them.

If you wouldn't mind messaging the consultant details then I would be most grateful.

[GrittyReads]

There is an official 'protocol' that GPs are supposed to follow - 'to the letter' !! - about referring women with sufficiently bad Endo to a BSGE clinic. It may take ages as a lot of women are suffering, there are not enough clinics to meet the demand, and yes ... the poor old NHS is being starved of cash, but, it is a requirement.

I really think your GP may well be at risk, if he doesn't smarten up his act.

Also, from what you say, the surgeon who did you hysterectomy probably should have read the riot act to your GP, and maybe, himself, passed you on to a BSGE Clinic, as yes ... the average Gynae in a non-Endo-specialist hospital unit, does not have all the bowel, etc. etc. surgeons on hand to help.

Talk to 'Endo Uk' - link at top of page, who host this site, they should be able to tell you where to get more help, and where to get a copy of the 'protocol' for dealing with the treatment of patients with severe Endo.

I do hope you get some answers, some relief and soon, some good treatment, so that your pain can be eased and you can get back to living your life to the full.

Take care.

[Mcfw in reply to GrittyReads]

Thanks GrittyReads

I am quite at the end of my thether with my GP surgery they are totally ignorant of endometriosis and refuse to make an NHS referral for me. I feel if I had the referral years ago when I suggested my pains and related bowel issues as possible then I may have been treated properly and not had a full and total hysterectomy and be suffering with bowel pains now. My GP called my pains colicky in a letter this week when I know I am ok sheer agony particularly at night. I am at the point I might jump up and down in the surgery. I appreciate any support and this protocol may be what I nee to treated them now with some sort of misconduct.

Thank you again.

[Tracey29]

If I can work out how to send a private message on this app I will happily let you know the consultant name ha ha clearly being stupid tonight