pudendal neuralgia

I am currently suffering with the symptoms of pudendal neuralgia, although I have not yet been diagnosed with the condition. My GP's don't seem to want a diagnosis of the condition to be made, I have seen consultants in Gyno and Colorectal up to yet, both of them privately. Does anyone know how I can get a diagnosis (yes or no), and what specialism is likely to lead to one?

This is ruining my life at present, all I want is some advice on how to cope.

20 Replies

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  • Personally, I found that the consultants I saw at my local hospital, and my GP, just did not know enough (or anything probably) about this condition to diagnose it. In fact they only considered it after I suggested that the symptoms match. I had to pay to go privately to see Dr Greenslade in Bristol. He is one of the specialists in this condition. I believe there is also Dr De Mello in Manchester and Dr Baronowski in London (sure there are people on this site who know more about them). If you were go and see one of these pain consultants privately I'm sure you could get some answers. Or there is the option to go to the top experts in Nantes. Ask Judy B on the site, she has been amazingly helpful to me.

    I'm two years into this journey and it's not easy to cope with. I have found a number of people on this website who have similar symptoms and it is so wonderful to be in contact with people who understand what you are going through. Do you have any idea what is causing your PN? What symptoms are you getting?

    I hope you get lots of support on this site and good luck. Take care. Xx

  • Hi Sueboooo. Don't know what started my symptoms, unless it was stooping to paint the bottom of a fence! Symptoms started with the feeling of a lump in my anus which spread to pain in the perineum and vulva. I now cannot sit properly without considerable discomfort. I have been suffering with this since July last year, as I was already receiving treatment for atrophic vaginitis, my GP's just put symptoms down to this, hence my request to see Gynaecologist. His diagnosis was no atrophy, suggested I saw Colorectal specialist. Had appointment with him mid January, and am now waiting for sigmoidoscopy which I am not expecting to show anything.

    Thanks for your support. Encouraging to know you are not alone.

  • Not easy getting a pos disagnosis. Not sure if I have one or not and that is 17 years on. Dr. B said no to PN

    colorectal consultant thought yes to PN. 2 Physio's and an Osteopath have said my coccyx is slightly out of alignment and another Physio won't hear of it? Anyway, I decided not to go down the nerve block route. ( a friend of mine has had 4 and none of them have worked) And as I can't tolerate the type of drugs needed, that is out too.

    I do go for Traditional Chinese Acupuncture ( private) every month which I find helpful. And I am careful majority of the time in what I do. A sort of self pain management.

    I would say, it can be difficult getting a diagnosis But maybe I was unlucky.. I am at present going for Trigger point therapy.. The Pain Support website (uk) is very good for ideas on how to cope.

  • It is a journey that you have to be patient with, and go through the process of ruling everything else out first. I saw gynae, colorectal and pain clinic before figuring out what it could be. I was glad to have all the tests etc before accepting it was this. I hoped all along that it was something 'fixable'. My own research led me to Bristol, my GP agreed that he would never have diagnosed it because it is rare and not well known. Long may it stay rare, but it needs to be better known so patients get the help they need.

  • My diagnosis was made immediately after a bladder repair operation which went 'wrong' so I haven't had to fight to get a diagnosis. After three years of different medications and steroid injections, physio and acupuncture I am still in pain and have to manage my days and my activity. I've never felt that my GP has understood the problem or wanted to really. He seems to dismiss me as a difficult woman who reminds him of his mother-in-law, his words not mine! I now attend a specialist pain clinic and the consultants there seem to have a better idea of what is wrong but they are still trying to find a medication that works and that I can tolerate. And I am seeing a pain psychologist soon to help deal with the depression I am experiencing.

    As well as the pain and restriction to my life I am left feeling extremely angry as the surgeon and the local hospital refuse to accept responsibility for this and the consultants who tell me to my face that the surgeon is responsible won't put that in writing so I can't get anywhere with a complaint. It really doesn't help me.

    Sorry not to have a better response for you. I do hope you find doctors who will treat you with respect and give you the support you need. Good luck, Julia.

  • The doctor that caused my nerve damage through prolapse surgery will not accept that anything he did would cause pudendal neuralgia. He has never seen it in his career. No acknowledgement or apology. It's awful to think that he will continue operating on people, not accepting the damage that can be caused.

  • Hi Sueboooo and posters

    I have never had an apology either. But worse still they and their colleagues (pain consultant also) made me feel it was my fault.

  • Thanks for your replies. Looks like I will have to follow the usual channels first, maybe then I will consider Bristol. My GP did tell me that my symptoms were 'rare'. Will keep you updated.

  • I have been to Bristol to be honest I wouldn't go it's private and as nice as they are I'm sure it's all about the money I'm not the only one to have said this!! Ask yr dr to refer you to London on nhs xx

  • Hi Julia. It must make you very angry that your pain was caused by someone's negligence. I am getting the same sort of response from my GP's, maybe because they don't understand the problem. That doesn't help us though, does it? In pain again this morning.

  • I sympathise and it took me ages to work out what was wrong. I kept having scans which were clear and being told my back surgeons , the sciatic and pudedndal nerve pain I was experiencing was nothing to do with my spine. My Gp was at her wits end and it was only by looking on the Internet that I came across this condition and realised my symptons fitted. I did indeed go to see Dr demello who confirmed the diagnosis. Currently I am starting a pain amangemant course to try and learn how to keep going but it is hard. I am on 600mgs of pregabalin which in itself has horrible side effects. Previously I was on gabapentin and now I feel I have ballooned in size. The pregabalin does help a little with the nerve pain. Before christmas if I had a flare up it was only by having morphine and knocking myself out I could cope. However no one wants and indeed should have to live like this. I am sorry your doctor is not more helpful. I have found using hotties and tens useful x

  • Elizabeth, I am so sorry you are dealing with this too. All of our stories match on some level. For me, I had hip scope surgery that went wrong. It took over a year and a half for a diagnosis. A Neurologist diagnosed me with Posterior Femoral Cutaneous Nerve damage and I mentioned Pudendal Neuralgia (after researching it to death) and he said it is exceedingly rare. However, when he heard my story, he did think it could be. In any case, he said they only do pelvic floor PT. I did three sessions and it flared me up. I am on Gabapentin for the nerve damage and it does help somewhat. I went on the Pudendal Hope website which was a wealth if info, albeit scary, but it did help me reach a diagnosis. I printed out the info for my GP and she agreed that it sounded like it. Here is what helps me daily:

    1. Prayer (maybe that goes without saying :O)

    2. Enjoying the good moments fully because my life has been so altered.

    3. A Kabooti cushion and mesh backrest for the car- it was the best money spent!

    4. Support from friends

    5. Pain management team

    6. Pain Psychologist (part of the team but he listens)

    7. Trying desperately to not listen to that voice in my head that begins to believe I am nuts!

    8. Working a few hours a week, just to get my mind of of it and be "a part of the world again"

    9. Being in a pool. I am not one of those gym goers and I had to force myself to go, but I love it once I am in the water. It is so helpful.

    10.Finding support like this where only others going through it could understand.

    Go to pudendalhope.info/

    Navigate your way around. There are doctors who specialize in this. Like some of the others, I have chosen not to get nerve blocks or surgery. I wish you well.

  • Hi Jomoney

    Thanks for the tip about Bristol, will see if I can get a referral on NHS. Today I'm having discomfort when walking, and feel that everything is 'hanging down'.

  • Hi Sophia500

    Sorry to hear about your surgery, it seems this takes a time to be diagnosed. I am beginning to feel uncomfortable about having any sort of treatment, really don't want to make this any worse.

    Will have a look for cushion and back rest, I have a support cushion at the moment but it's not the most comfortable thing in the world.

  • Hi Suebooo

    Frightening to think that surgeons can do that to you and not be aware that the condition exists.

  • I walked into surgery after teaching 5 courses back to back, to have a fibroid removed, in the hopes of starting a family. I went back for the surgery smiling and laughing. That would be five years ago this March. I am now unable to sit at all, I have to sleep in an antigravity chair to keep the pressure off my pelvis, I am bedridden and in unscrupulous pain 24 hours a day. When I returned to the surgeon for the follow up he said a billion trillion chance this happened in surgery. I have been to 20 specialists. I have been treated with kindness, rudeness, compassion, arrogance, indifference, and utter disbelief, and amazingly what the majority agree on is that "this" happened in surgery. "This." I have been diagnosed with "this." What I know is that "my this" means I will probably never have a baby, I will never return to my profession, I will not be able to ride in a car, go out to dinner, or take a trip. These mind numbing drugs keep me from being able to think, write, or remember. I am in a physical and chemical prison. I have tried medication, acupuncture, meditation, nerve blocks, chiropractics, Chinese herbs, all natural remedies, and physical therapy. My next venture is Ketamine.

    Post surgical description by surgeon: "It was fascinating. The fibroid was the size of a melon and suctioned to the pelvic floor. I had to use both hands to break the suction and yank it out."

  • Hi Monique

    This is a horror story. Did your symptoms start immediately after surgery? Has the surgeon admitted responsibility?

    Take care of yourself.

    Liz

  • Hi Sky58

    Have you found out what caused your problem?

    I had back problems in the sacral area some years ago which resulted in my having to have 4 months off work, just wondered if it could be anything to do with that.

  • Hello Elizabeth 1957

    Everyone here seems to agree that GPs are usually very unaware of PN and often quite at sea when it comes to looking for a diagnosis. Seems we all have the same experience, but at least can offer support to each other! I have certainly had the same problems with trying to get diagnosed and have learnt more from this forum than anywhere else. In case it might be useful for you and others recently faced with the condition I think I'll write a new post on things that I've found helpful in the 10 years I've had this condition, rather than make a long response here. I wish you luck and very best wishes.

  • Hi. I have had sciatic pain for years and originally had a squashed disc. However that is not the case as the disc has completely dehydrated. Mri scans have been clear and I saw two back surgeons . Both have said the pain is not coming from my back. No ideas where it has come from though I had botched bunion surgery on my right foot a few years ago. I do over pronate having flat feet. The pain is mostly in my left side. I have been told the nerves all get sensitised in that area and "chat" to each other thus causing the pudedndal and sciatic pain. That was Dr demellos diagnosis . I had an internal ,nearly jumped off the bed and he said yes using the Nantes criteria of questioning about my symptoms it was probably pudendaly neuropathy with suspected piriformis syndrome. It's a long journey. I am now on a pain management course trying to learn how to cope with it. Good luck Kate x

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