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.
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CecilyParsley
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I'm so sorry that you are going through all of this. I haven't had any experience with the condition you mentioned, but since you don't have any replies yet, I read your post. What a dilemma. A year to see a pain specialist? I'm no expert, but I'm not sure a neurologist would be able to help you since they mostly treat problems with the brain and central nervous system. Could you call one of their offices and ask if they treat PN? I'm in the US, so I'm not familiar with how your health care system works.
Serotonin syndrome can happen with medication for nerve pain, unfortunately. But the anesthetist didn't seem very helpful. It might be good to see a different one to get a second opinion and see if they will do nerve blocks. Is there any kind of pudendal neuralgia website that can recommend doctors? Perhaps there are charitable organizations that could help you with the cost? It would definitely be worth looking into. I really hope you're able to get some relief!
Thank you so much for responding. It is a dilemma. The anaesthetist I saw is the best private pain specialist in my area but she told me I woukd die on the table if I get my knee replacements. It frightened me to death to be honest. I will wait until I get the letter advising if my referral and then it should indicate the wait period. I will have to make a decision then.
Red hot poker pain and urinary issues, has no Dr considered vaginal atrophy ? this can cause all the symptoms you have and more. There are so many different treatments so might be something to think about.
I have vaginal atrophy but the gynaecologist told me the severity of it which causes my heart rate to 86 during rest and the profuse sweating and agitation does not fit with that diagnosis. I use Vagifem for the atrophy and moisturiser which has seen my UTI`s go from monthly to approximately three per year.
The fact that this red hot poker pain is sporadic also confirms it us not the atrophy causing it. Thank you for replying though. I suffered for years with burning, irritation and UTI`s before the Urology Nurse diagnosed it.
It’s hard to understand the lack of compassion these doctors have for you. I’m so sorry. The “die on the table” comment was ridiculous. Granted, you may need to somehow lower your BP before getting anesthesia but that is uncalled for. Just what a person in pain needs - another jolt to your nervous system and cruel remarks to keep you in fear.
And what the heck does your gyno know about atrophy causing high blood pressure. Another idiotic statement.
I wish I could offer some advice but you have my empathy.
Thank you, it made me so terrified that I had a two hour operation on my nose under local anaesthesia. It was messy, bloody and afterwards I haemorrhaged and spent a night in High Dependency and three days on an ENT ward. My ENT Consultant was truly amazing. It was the first done under local anaesthetics and despite the surgical staff being splattered with blood I was forced to spit out they kept me informed, in good spirits and even clapped as I was wheeled out. The Consultant said she would not relish doing it again as it would have taken 20 minutes under a general anaesthetic but she would have if it benefitted me. I was so pathetically grateful that I was treated with dignity and compassion. It is all that we can ask for.
The worst thing about the gynaecologist was that in the letter she sent me regarding the consultation, she said that we had discussed my “ depression and anxiety” in great depth?? It never happened. I have never been on anxiety medication and have been off antidepressants for 14 months . It was not even mentioned. Further the pain clinic have said due to issues with her referral to them I do not meet their criteria for treatment l I intend to challenge it but it is yet another setback and so unfair.
Yes I saw a private Uro gynae who sent me to a private Pain Consultant. The Consultant I was due to see on the NHS was a Uro gynae but I saw her Registrar instead . She consulted with the Consuktant twice during my appointment and the only recommendation was to ask the Continenve Service for a urethral plug which had she seen me she would have known was impissibke ( I am obese, have poor balance and no feeling in my finger tips and poor grip).
I always wonder how much gets lost in translation when going back and fore like that. Also "urethral plug" only after all options considered and I would not agree until I sat in front of a fully experienced Urogyne who went from the beginning ie when your ops began young and fully examined. xx
The Registrar blatantly lied to me also. I asked her if there was a correlation between bladder voiding and incontinence and Bechets. She said absolutely not when my Rheumatology nurse and Bechets UK recognise the issue. It was a means to just fob me off to another service.
They probably did not even know as can be the case but wont admit. Bladder voiding and womens hormones are very much connected. Are you able to cope with Pelvic floor excercise? As can help with voiding and less leaking. If not tried Yes Vm moisture it is very good as balanced PH to our vagina thus less thrush and UTI like burinng pain. Some Gp will prescribe.
Ask for a referral for Pelvic floor training. They can adapt the exercise around your conditions. No need for anything invasive just exercise of muscle you can build up slowly and gently and will help with urine leaking. This should be explored and offered before any kind of plug ! What did your Urodynamics and Cystoscopy show ? Review your HRT meds too. Women health in this area is so neglected and sadly sometimes even by women Gyne.
I have had 16 gynae ops , the last being a hysterectomy 23 years ago. The leaking started immediately. By the time I got to the Urologist they could not catheterise me without bleeding. An exploratory op showed a large diverticulum at the top of my urethra . Medication did not work so they offered me the pelvic portal or pads. I chose the pads and referred myself to physio. I don’t know what you know about Bechets but it causes excruciatingly painful ulcers of the labia and vulva with swelling which lasts for anything from 10 -56 days in my case. The physio accepted that there was nothing that I could do during these times as I was too painful and I had little or no control over my pelvic muscles.
They actually left me for 20 years without HRT or lubricant too which exacerbated things and caused no end of UTI`s. At least now the UTI`s are far less with the Vagifemme and lubricant.
OMG no HRT after Hysterectomy that sound brutal. I have not come across this before. How was your body suppose to cope. I had one Cystoscopy which ended traumatic in my thirties and woke up catheterise and then came home and hemmoraged all over the floor very poorly. My next went fine but I went out of area. Both along time ago now and neither Consultants no longer practice.
No It made me realise I had to find better care. The second UroGyne was amazing. She does not practice as no longer with us, passed away. She gave me confidence again to approach and reach out when I needed more help. Will be forever grateful to her. xx
I am 35 years post total hysterectomy and bilateral ophoorectomy. I was also unable to take HRT even though I was only 31 years old. It just reignited the endometriosis (10 surgeries).
I have found that vaginally applied HRT cream (a small amount - a pea or two size) is required to maintain the tissues of my urethra and my vagina. At one point I ran out and did not go to a gyno for about 3 years. The atrophy was so bad they gyno stopped the exam and put me back on cream HRT for a month before trying to exam me again.
Many tissues in that area require estrogen for proper cell growth. I would try that first, and see what symptoms go away. Then try a uro-gyno for whatever remains.
BTW I still get morning hot flashes with my coffee (not giving that up). I get hot flashes with a glass of wine (not giving that up). I use the following:
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