I live Bedfordshire outside London in United kingdom and have symptoms of Pudendal neuralgia and also suffer from Peripheral neuropathy. I am waiting to see neurologist for peripheral neuropathy.
Recently I been having severe pain in left leg thigh and really don't know whether its pudendal neuralgia or peripheral neuropathy pain.
My GP is not very helpful when I try to tell about possible pudendal neuralgia symptoms, as he seem to think it will be same neurologist who will deal with my symptoms of both pudendal neuralgia and peripheral neuropathy.
I need to tell my GP to refer me to pudendal neuralgia specialist. Who can I go about this
Need some please
Only hospital I know with pudendal neuralgia specialists is UCLH and want my GP to refer me there but GP not listening.
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Benhur1
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Since I developed pudendal neuralgia, I noticed that I have much less mobility in my left inner thigh, e.g., when trying to do the splits, or just stretching. I asked two doctors: one that follows my calf problem (I pulled it while running), and my pelvic pain doctor, and they both think it's the pelvic pain rather than the running injury or other. If your GP is not listening it may be worth going private?
Do not want to burst your bubble but I went down the UCLH route waited 8 months for an appointment and all that came out of it was a referral to a self help pain management group, this to help you with living with pain but nothing about how to cure or treat the pain. I was very disappointed believing that they might know more than the local hospital, the self help group were all people like you and me, all had the same story to tell none had received any treatment to actually sort the problem at its route cause, basically a dumping ground for the untreatable.
I went to the UCLH to see the team that are supposed to know more than the local hospital that is why I chose to travel because I do not live in London. I can only speak from my own experience and do not want to deter you from trying your best to find a solution. But they did not have anything other than an acceptance that CPPS is a real problem for many people, I had hoped for more than this but the end result was a referral back to my local pain clinic with no practical help. If you live in London give it a go but I would not recommend travelling a long way.
I have suffered for many years with CPPS but last year things took a turn for the worse and my symptoms spread, a new symptom was groin pain and a short time later pain in the abductor muscles in one leg.
The pelvic floor is a sling of muscles that attach at the front to the pelvic bone, the abductor muscles or the muscles down the inside of your leg also attach to the pelvic bone. Therefore it does make sense that all of this is connected, one group of muscles not working correctly will put a strain on other muscles that are going through the same connectivity points.
That does make a lot of sense! My GP gave me a referral to a good gynecologists, he is in no way an expert on CPP, but he's trying his best and doing research. I'm taking CBD oil, and I find it helps a lot with pain management
Hi I read your reply on here and I wondered how your mobility in your thigh is now? Are you still exercising? I too have pudendal neuropathy which sometimes I can manage other times I cannot... I have been suffering with this for nearly 4 years and I am on Amitryptilline and doc just kept telling me to raise doseage. I enjoy doing exercise but lately really feeling it pulling on left side and wondered if I should be exercising I don’t want to give up exercising... thanks
Hi Ailiesonkerr, I also love exercising! Since writing this, I have developed 2 more problems, a shoulder inflammation and a foot inflammation. The doctors are puzzled and don't understand why they just don't seem to go away no matter what they try. None of the doctors told me to stop exercising (apart from pilates and squats, those are in the red list). They all think that stretching is a good idea. The mobility is still the same, at least I think, because I haven't been able to do much yoga because of my shoulder! What type of exercise do you do?
Hi Since Christmas lockdown I have been doing like online circuit class, sometimes 1/2 hour Hiit class then stretching one I was really liking it all as it was giving me good routine and motivation these last like 12 weeks but I think doing that and there were lunges and squats in that maybe triggered it to flare up a lot again and then I was trying to cut down my amitryptilline (daft probably) I know.... it is so weird though because I have been having intermittent shoulder pain too! My pudendal neuralgia on left side and shoulder pain on right side. What do you take for pain management? I have appointment today with gynaecologist again to discuss it all... I think the hardest thing I am finding to accept is that this will never go away....
Oh no it is not "it will never go away", rather "it might never go away"! We do have a chance to heal, so never say never. It was probably the lunges and squats.. in March 2020 I was feeling okay (not healed, but better than ever), and I couldn't resist the temptation to do some pilates. Just one month, and I was back to square one took me ages to fix the flare up. I've learnt my lesson. The toughest thing was to give up cycling, which was one of my passions. That is so weird about your shoulder! Although I have been seeing an osteopath, who says that is all derived from the pelvic problems. basically our body is trying to compensate the pain by changing the way we walk, our posture...
oh and as for pain management, I had tried amytryptiline (hated it with a passion, it was messing up really badly with my sleep schedule and my mood), and I am now on my third week of pregabalin, 50mg per two times daily. It's okay, too low a dose to feel any changes I think! Will increase to 75 x 2 in 2 weeks
Oh gosh I feel for you missing cycling I could not even contemplate that! I feel my symptoms all started with going through menopause snd sitting at work all day.... by the end of the day sitting I just wanted to screen with the burning all over my left buttock like someone had poured acid over it... I tried standing desk so go between that and a kneeling chair which has helped a bit. I am going to discuss with gynae as realistically think it also might be all related to having had endometriosis, had full hysterectomy because of that and I think it all must be related... I must also say when I had stage 4 endometriosis can remember having terrible shoulder pain which I put down to repetitive strain disorder 😆.... I have tried some accupuncture which I thought helped too...
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any chance to register with a different GP maybe?
Can a firm diagnosis of PNE lead to treatment, or is it just pain management?
Pudendal Neuralgia syntoms
Health Professionals need more training in managing chronic pelvic pain and chronic pain in general.
Help needed 
I need to know if I’m the only one 😿
