pudendal neuralgia or entrapment

[electricjaws]

i have had for 8 months a terrible sharp pain just up inside my bum from back to front and into my leg all on the right side,the pain relieves slightly if i lay down on my left side,i nearly die sitting on it ,it feels like i have sat on a wasp, i have been checked under gen anethetic for fissures none found(incidentally the pain has been worse since this) and nothing on a m.r.i. scan,so i decided to google and see why i should have pain there if nothing showed,came across pudendal neuralgia and all the symptoms fit,my g.p said it could just be a bit of nerve pain(A BIT!!!) so on mon my fella and i are going to speak to g.p about it with some info off the internet,is there any where i can visit on web with n.h.s info on it as he may take more notice that way,i desperatly need some pain relief,i think allthis may be to do with fibromyalgia,myo fascial pain and pelvic pain but everywhere else i don't have sharp intense pain ,if i am not happy with his opinion i'll go to head of practice,but it would be helpful if i could find something with n.h.s info on it as opposed to any other web details on so any help would be fab ,hugs electric jaws

[FKSW]

I'm not sure if the NHS direct website have any info about pudendal neuralgia up yet, I think it should do soon... that probably doesn't help much now.

Just be as persistent as you can with your GP, because this condition is very rare and unknown. I was told for years I had other problems, such as fibromyalgia and general pelvic pain, but I managed to get a diagnosis of pudendal neuralgia finally by a pain specialist in London a year and a half ago, and when I had surgery they found that my pudendal nerve was trapped in two places on the left side. Unfortunately it took me long time to get here, because even when I first found information on pudendal neuralgia and took print outs to the doctor four years ago, they did not believe me. However, i think things are changing, and just remain insistent that you want to be seen by a specialist who diagnoses this condition. There is one in the manchester area who does, and one in bristol, and the one i saw in london. Any questions you have please ask me. fiona

[Hidden in reply to FKSW]

who is the dr. in manchester and which hospital please

[Hopefulforthefuture in reply to FKSW]

Hello FKSW,

Was your Nerve Entrapment surgery successful? If yes, would you be so kind as to share the name of your surgeon?

I am told I have an entrapped pudendal nerve in a very difficult place to reach (above the less sciatic foramen) requiring serious and risky laparoscopic surgery through the abdomen. I am based in Europe but willling to travel anywhere.

Thank you for your help!

[Okiegirl in reply to Hopefulforthefuture]

❤️❤️❤️

[electricjaws]

i don't think i am going to get much help from my young g.p to be honest,how did you get to see the specialist? did you have to have g.p referal? i live in york so manchester would be the one nearest me ,but i don't think my g.p will care less about it or he'll tell me i just got to live with it,if he won't refer me i will go to head of the practice and try to presuade him,do you know wherre i can find details for the specialist in manchester? thanks x

[SL10]

You could ask your GP for a referral to a physio specialised in gynaecology - I accessed help privately at first as the NHS waiting list was so long but now get NHS treatment and it helps temporarily though I have to return every few weeks.

Some people are helped by neuruological drugs such as pregabaline and gaberpentine so you could ask to try those. Apparently my problem was triggered by hormonal factors so that may be something you need to look into.

Judy recommended the Valley Cushion which I bought over the Internet and I don't go anywhere without it. It's not cheap but I find it worth every penny.

I've been told this condition is permanent but I have had some days when I've been almost symptom free and I'm hanging on to the idea that if I can recover temporarily, then full recovery should not be impossible.

Good luck and don't accept no for an answer.

SL10

[electricjaws in reply to SL10]

cheers i shall look into the valley cushion,i went back to g.p with my partner today,and to cut a long story short he is now agreeing to send me to a gyneocologist,he said to go through things with them and to see what they come up with ,i also managed to get him to give me a low dose of pregabalin and i am on a low dose of amitryptiline,he was a bit reluctant to give it as i had probs in the past (i'm very chemical sensitive,)but i explained when i was ill on it before,i was on a very high dose of amitryp and pregab,so i kind of feel a bit more positive about todays outcome at present

[pelvicmessenger]

The best thing to do is get the most up to date information on PN/PNE. My show has several back/archived episodes with the top doctors currently in the field of study concerning the pudendal nerve. Please go to our website, you can email us directly and also gain access to the past podcasts to listen too.

Also my partner Jessica Tomsic personally has PN and has had several surgeries and treatments for it. She has her own blog about it and it is also able to view from our shows main site.

thepelvicmessenger.org

I am the national patient advocate for the IPPS, and suggest also looking at their site. pelvicpain.org

Fact is, most GP and even Gyno's will not have accurate info on pudendal neuralgia.

Our show has on only the best of the best medical professionals from around the world...so helps people from around the globe get current info.

blogtalkradio.com/pelvicmes...

Thank you and I wish you only the best,

Elisabeth Oas

[PPSN_JudyB Pelvic Pain Support Netwo]

The specialist in Manchester came to France with me and some other patients several years ago, he has not been to any of the International medical meetings during the last few years where these conditions and their management are discussed. Things have moved on since then. I attend and speak at many of the medical meetings. However he is doing nerve blocks and probably knows more than many doctors about this. I wouldn't waste time having several nerve blocks especially following the recent presentation at the congress in Nimes. Diagnostic nerve blocks however are still useful.

We have written a leaflet about the diagnosis and management of pudendal neuralgia and another about nerve blocks which have been developed according to the Information Standard. This has been through a review process ( carried out by the British Medical Journal ) and patients and health professionals are finding the information really useful. Several patients take this to their GP/other health professionals and have given us very positive feedback about it.

Pudendal neuralgia IS nerve entrapment. This was clarified at the recent congress in France.

Good luck. Do let us know how you get on

[Hidden in reply to PPSN_JudyB]

These leaflets sound like they could be life changing for those of us seeing GPs and consultants who have no idea what PN is. How can I get a copy? Is is available online at all?

Thank you

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Hidden]

They are not online , please e-mail me at [e-mail]

[helenlegs11 Volunteer]

How can patients get the PN leaflets Judy? As you say something to take along to a GP can always help.

[Nannybob]

Hi , i have been suffering with PN since a vaginal hysterectomy went badly wrong in 2012. Agony to sit or lie down. I have had 3pain blocks so far, unfortunately the last one is making the sitting &lying worse. I have tried many many cushions so far none help and eventually the pressure on my coxyic causes the massive inflammation to rise and im in agony. Its so dreadfully debilitating, has anyone tried the Valley cushion , and do you know if it can be got from NHS as it is very expensive . Yours truly Bobby .

[trevormorgan]

My surgery was partially successful.

Pain much reduced. I have shallow ice baths daily when it is playing up.

I have a name for my left pudendal nerve, I call it Bernie and use mindfulness to shut the nagging little bastard up.

Face and fight the demon.

[AuntieH in reply to trevormorgan]

Hi trevormorgan, I'm glad your surgery was partially successful. Where did you have it done?

[trevormorgan in reply to AuntieH]

Surgeon Mr Wong

Dr G Greenslade, they may have moved now

Based at pain clinic at Southmead Hospital, Bristol UK

Operation at Spire

Funded by NHS as I am a veteran.

[trevormorgan in reply to trevormorgan]

Find a regime that suits you. Male and female pelvis are so different.

What works for me is ice baths and trained mindfulness, plus a positive belief in being able to cope.

Never lose hope. That is easy to say but hard to do. My diagnosis took ten years and they were difficult.

If you are given psychological claptrap ignore it. This is a physical condition and must be treated as such

[AuntieH in reply to trevormorgan]

Thank you, trevormorgan. I am in the US. I am glad you got some relief. Will keep searching! 🙏

[ahhh453 in reply to trevormorgan]

I am also a veteran and would love to find out how to get funding for this operation. If not I’ll have to pay private and it’s thousands.

[Pudendal72]

My husband has Pudendal neuralgia from a surgery gone wrong. He had a horrible time persuading his surgeon that he was in really terrible pain. Finally after 2 hospital visits, he was referred to a Chronic Pain Clinic. He is on a multitude of drugs and had several nerve blocks, but eventually the nerve blocks started to take (it took nearly a year). After a year and a half, he can now sit for limited amounts of time. Don't give up. Find a pain specialist (they are more likely to believe the pain you are in) and a good myofascial pelvic floor physiotherapist. Also the nerve pain drugs are better for this pain than opioids, although my husband needed both. Good luck in finding the right treatment. It is a very misunderstood condition.

[AuntieH in reply to Pudendal72]

Where did your husband get his nerve blocks? Are you in the US?

[Pudendal72 in reply to AuntieH]

We live in Ottawa, Canada. The chronic pain clinic he attends is attached to our largest hospital. He now gets RFA's (radiofrequency ablations) every 3 months. They don't completely take away all the pain, but at least he can sit for brief periods. The doctor can't say whether this will completely clear up or not. With nerve issues, it appears no one can give you a definitive answer. He has reduced the number of medications that he is on.

[AuntieH in reply to Pudendal72]

Thank you for the info. I'm glad it's helping your husband!