Help needed

In my last post I had been examined by the pelvic physio in manchester on nhs and was left in agony. I didn't know where to turn next as I still cannot sit, drive, have se or be touch inside vagina without being left in severe pain..I finally booked a private apt with dr greenslade in Bristol partner drove four hours from manchester with me lay on quilt. We stayed in b&m overnight and saw him yesterday. I had no reason to think he would not agree with dr de mello and my own belief that I have pn. In fact I went hoping he would give me nerve blocks. I had wrote down my history..told him I cannot sit so stood in his room..he wrote down what I told him and at the end he said I don't have pn I have occult bowel prolapse..well it just threw me.. I do not have problems with my bowels..I found this hard to take in when he did not even examine me..he said I could see his colleagu mr Dixon, have an examination under general aneasetic and Botox in my anus..I showed him dr de mellos letter which said I have hypertonic pelvic floor and clinical peudendol neuropathy..I told him I have pn symptons and he said if it was pn I would have pain on outside of vagina as well as inside..I said I get arousal feelings so he said I have some pn..I told him about the new symptons of numbness in my right buttock going down my back of right leg he said that is cuneal nerve..I came home feeling it was a wasted journey and am in more pain from travelling and a waste of money. Being on benefit £300 is money I cannot afford to waste.. Can you please give me some symptons are pain inside front of vagina where pelvic floor muscle throbs stings, swells and goes into urethane stinging..sometimes it has started buzzing in anus like a wasp stinging me..the top go my left foot feels numb...if I lie down and relax it eases..cannot

sit without bringing it on...It is definitely nerve pain..if I get stressed I clench my pelvic floor without realising which makes it gp doesn't help and said it was in my mind..the only other gp in my area is my mums who is just as bad..wouldn't send her for chest X-ray when I knew she had cancer..

12 Replies

  • Hi,I had similar diagnosis from doctor greenslade. My pain started a year ago with a very intense burning sensation in the vagina & uretha after using a neuro trac machine to help with pelvic floor exercises which a women's physio had advised me to do so,as I have a moderate bladder prolapse. i had symptoms of a water infection which lasted about 6 weeks.By last September my water works seemed to settle down but still very irritated down below & kept getting a numb bum when inner vaginal pain has now gone but I get an ache or cramping tight feeling in my buttocks and backs of thighs and perineum. in the last month I have developed a tingling sensation in the left ankle and top of my left foot.when Im moving around I feel ok but if I sit or stand still for longer than 5 minutes the pain starts. i saw dr greenslade privately in march and the first question he asked me was "how are my bowels." I said usually constipated.I've always been that way. he thinks I have a prolapsed bowel too. he said the pelvic floor tightens without us realising to hold in the prolapse. this produces a build up of lactic acid in the muscle which in turn irritates the nerve. He referred me to see mr Dixon and recommends I have a ventral mesh plexy operation to lift the bowel. My appointment is in a week. I too am not sure if he is right but after reading about your experience it seems similar to mine. Has he referred you to see mr Dixon? And what medication are you on?

  • Just really do your research about the use of mesh.......I too see Maria Elliot in London.

  • Thank you..i have sent you a private message. take care xx

  • thanks for your reply. there are certainly some similar symptons to me. i have been clenching my pelvic floor muscles since i got the pain after hurting my back. i have wondered is it the clenching which has irritated the nerves in my vagina or is it the pain which is causing the pelvic floor tightening.. i was asked how are my bowels..i have never been regular ..sometimes i go once a week. this is normal for me and has been this way since i was a child. i have never thought of this as constipation..the only time i feel constipated and cannot go is when i take codeine so i notice the difference..i do not believe i have an occult bowel prolapse but am willing to rule this out. He did say i could see mr dixon but because i am in manchester which is four hours away he said there is a lady in manchester who i could see although he said he doesnt know if she is any good. i am going to wait and see what his letter says and show it to my gastro doctor who i have seen for many years..I take 300mg of gabapentin 3 times a day, 50mg amtriptyline, 5mg morphine patch and codeine only when the pain is really bad. just wondered if you have a had a test to see if you have a prolapse bowel or you going straight in for an operation. I was also wondering if your pain can be related to your bladder prolapse.. i have been referred by my consultant in manchester for a pelvic mri scan which i had today and am having a nerve study test done in a few weeks. Have had three mri scans on my spine which were normal..when i get the results of all my tests and dr greenslades letter i will decide what to do. I hope all goes well for you..will you let me know how you get on and i will do the same..take care xx

  • Hi luckylea, ive been down to Bristol today and saw Mr Dixons registar.A very nice lady who listened and examaned me front and back and looked up my back passage with a telescope! She confirmed i have a bladder and bowel prolapse and recommends the ventral mesh plexy operation which lifts the bowel from the top.I have to wait to see if my area will give funding as im in worcestershire.Then in the future i may have to have the TVT and repair. Im not having incontinance problems so ill leave that for now and see how i go. Ive had an MRI scan done on my back which came back clear.As for the nerve pain she just said carry on as i am.I was hoping for a nerve block.When i saw Dr Greenslade he was reluctant to do it and said if the nerve is irritated( which it is) it might make things worse.My symptoms have changed im now aching in my bones in my bum and coccyx when i sit down and have tingling in my feet on and off.Ive increased my amitryplin to 50mg but i dont know if its making much difference.I was on pregablin from october to last February but was still in pain and felt very droozy so came off it.My pain isnt as bad as yours as i can sit but not for too long and im uncomfortable with a numb bum after 10minuites.Have you tried relaxation dvds?. I found lots on youtube which ive listened to with headphones resting on the bed and doing deep belly breathing. I hope your not in too much pain and get your results back soon.......take care x

  • Sounds like we have similar symptoms with the bowel prolapse. I am also waiting to see Mr Dixon and also will have to apply for funding. Same operation has been recommended. Have you decided on surgery? Or had any luck with funding? I will know more once I've seen him, but very worried about the thought of using mesh. Have pudendal entrapment in alcocks canal too. Would be lovely to chat.

  • Hi sueboooo,

    Many thanks for your reply.

    I saw Mr Dixons registrar on Sept 3rd and was told that they would send a letter to my G.P and discuss my case in a meeting in Bristol. I contacted my G.P 3 weeks after and was told they hadn't received a letter but she would get the secretary to chase it up for me. After a few days she did ring me and said they had received a letter saying I was being put forward for the surgery and we now have to wait for the Bristol team to contact them. I hadn't heard anything so 2 weeks ago I rang Mr Dixons secretary to find out what was happening.She told me they were waiting to hear from my doctors to see if funding was to be approved.

    They both seem to be saying they're waiting for each other! I really don't know how the system works regarding funding but I'm getting very frustrated!

    She said she would ring my doctors to find out what was happening.

    I havn't heard anything as yet but can't believe its been over 2 months and I'm not even on the list yet!

    You'd think this day and age of emails it wouldn't take 3 weeks to send a letter.

    I have decided to go ahead with the surgery as I've been told it will stop me from clenching my pelvic floor and hopefully in time stop the pudendal nerve pain.I do worry though if I'm doing the right thing.

    Do you mind me asking what your symptoms are and how you cope with them?

    I believe that if the operation is out of your local area things get complicated regarding funding. Are you in the Bristol area?

    feel free to p m me, Lin x

  • Sorry to hear about the lack of understanding you received. I have had the same experience with different doctors where I live in Sweden. I eventually travelled to London and saw a physiotherapist specializing in pelvic issues. This has helped me a lot more than any doctor so far. I'm not pain free but much better and it does so much for ones healing to meet someone who treats you nicely and gives you back your hope. My p t was Maria Elliott in London. I'm sure there are others, but she is brilliant.

  • thank you for your reply..would you mind letting me know what symptons you have and what your doctors have said..take care xx

  • My pain these days is located along the pudendal nerve in the outer labia (I think that is what you call it in English?) on the right side. Every now and then it will move in to the right side of my vagina and towards the back all the way to the "sitting bone" (not sure about the English word). Sometimes I will have a painful, burning sensation in the clitoris and a slight sensation of PGAD. This summer I have actually had a few totally painfree days, but usually I live with the bee-bite type stinging along the pudendal nerve. When it started 2 years ago it was a lot worse and I was unable to sit or bend forward for a year or so. PGAD was also really bad. Doctors I have seen in Sweden have been absolutely clueless. PN (or the pudendal nerve for that matter) had obviously not been included in their training or practice.... They kept telling me they never heard of such pain and that it will surely go away with time. I was also referred to a gynaecologist who was an expert on vulvodynia, but she had never come across pain like mine, took an MR and then said there was nothing more to do. Luckily I'm doing ok with English and started my own reseach on the internet. Found the PN-support groups, research papers, experienced PN-sufferers all over the world who shared their information, contacted p.t's through e-mail and added two and two together. Was recommended Maria Elliott so travelled to London. She could confirm what I already thought I knew and help me get started on exercises and stuff. Above all she confirmed that I was not nuts, which was a big step for me given the awful appointments in Sweden....;) I'm still dealing with some of the symtoms and I plan for another trip to London, but I'm much stronger with the confidence a good p. t. could give me. That's what I thought of when I read your post - that these failing appointments can wear you out and make you lose hope. I think that an experienced p.t. (like Maria Elliott or someone else with pelvic floor focus) can give it back to you (while also doing a very skilled examination). At least, that's what happened to me. Good luck and take care!

  • If you want a second opinion, see a sports physio. They are very experienced in finding the root of pain, releasing trapped nerves, and generally getting your body into a stable position (no over acting/underacting muscle spasms).

    It does cost money, but if you weigh it up against NHS appts, pribate appts, travel then it's nothing really and it will maske you better. If you explain you are on benefits, I'm sure they can adapt your treatment so you have fewer appts but do more exercises at home.

    As it is a process of breaking down muscle spasm and building up muscle into a healthy normasl behaviour, it does cause more pain. (stick a piece of sellotape on a baloon and blow it up - it's mis shappen and puckered around the sellotape- this is your muscle in spasm. Try and take the sellotape off - difficult and balloon stretches and puckers in different directions. You csn only do it a bit at a time. This is how sports physio works. Releases a bit at a time, but other areas may become affected short term).

    So you can decide - lots of uncertain hospital appts causing stress, not knowing if the diagnosis is right, drs giving different info, not sure if you are getting the right treatment


    A few sessions with a sports physio who will realign your body, treat the underlying cause of pain, release the nerves, teach you to build up your muscles and how to care for yourself for the future.

    Just find one who is experienced in that area of the body and is prepared to work with you so you have fewer sessions.

  • thank you for your reply..i appreciate your advice..when i have had all my tests and get a definate diagnosis i may go down the route you say ..take care x

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