Hi everyone. I have had 16 gynaecological operations starting at aged 13 and ending 23 years ago a day before my 40th birthday when I had an emergency hysterectomy where for some reason they left my cervix.
Following my op they tried HRT but my BP shot up so I was taken off it. Urinary incontinence has got worse as the years have gone by and six years ago I began to experience severe burning pain up inside like a red hot poker. The pain is bad enough but the added issues make it intolerable. My heart rate increases and I literally drip with sweat, my BP increases and I feel restless and agitated, unable to sleep for as long as it lasts. Generally it continues 2-4 days. I end up sleep deprived and miserable.
I also experience hardening of the clitoris when this happens which is uncomfortable.
I saw a private Gynaecologist last year who said there is no need to examine you you have Pudendal Neuralgia and it is incurable. She referred me to a private anaesthetist specialising in pain management. Initially I thought this was a good thing but after four appointments, suffering Seratonin Syndrome as a consequence of her choice of pain relief, I am unsure. Each time she says I am in too much pain due to other conditions ( Bechets, Raynauds, Osteoarthritis) to do the nerve blockers and I have a limited income. She diagnosed compression of the genitofemeral nerve and said the agitation, sweating etc were my autonomic system. She warned that if I had a general anaesthetic for a planned knee replacement I would “die on the table”.
Finally my appointment for the NHS Gynaecologist came through and I saw a Registrar two days ago. She examined me and said she could see nothing wrong so was discharging me. She said I should go back to the private Anaesthetist and get pain blockers. I was quite horrified by this as I have worked hard all my life until my illness and cannot afford to pay out continuously. She eventually agreed to send me to a pain specialist but said I would have to wait up to a year.She refuted any connection of my pelvic issues or my Bechets to my urinary incontinence.
Has anyone please got any advice to give me? I would be very grateful. I am unsure whether to ask for a referral to Neurology or try and find the money for the private Anaesthetist.