What specialist should I go see in UK? Numb left side of perineum male

[misanthropy]

Symptoms

No diagnosis - Told "Neurpathic pain" from colorectal surgeon treating for fecal incontinence. Told first by GPs I had IBS for many years, even though people all the time shouting abuse at me for fecal smell in public, even though no real leaking. Finally I paid to see a private specialist for fecal incontinence because the NHS was just treating me like a piece of sh*t. Had solesta procedure twice. Mentioned at the time minor burning sensation on front of lower abdomen. Told neuropathic pain and may never get a diagnosis for FI. Had a few colorectal investigations no structural defects.

Symptoms now have got worse-

Left lower abdomen burning sensation constant, but changes in intensity

Left side of perineum feels 50% numb. Anus still contracts on both sides, not sure if L side is weaker. Wet feeling when walking around, but no liquid to wipe away 99% of the time I check. ? smell gone. Don't understand, very worried

Left side of back of scrotum same numb feeling

Muscle twitching in in perineum, anal canal and inner upper thighs. Sudden, sharp pain (like a needle stab) sometimes in feet

Twitching and numbness worse after sitting down for a long time, and perhaps also lying on left side. WHen lying flat on back, on stomach or on right side, symptoms all virtually disappear

Qs-

Does anyone know if this sounds like pudendal neuropathy?

What doctor should I go see for this in UK? I don't mind travelling across UK or if private or NHS

Thank you in advance

[Poppy26]

I was recently diagnosed with bilateral pudental nerve entrapment and had some of your symptoms but I'm female. I saw an excellent consultant mr Gareth Greenslade spire Bristol and from his conclusive diagnosis I had surgery last week. Early days but remain positive. It does sound like pudental nerve damage but I'm not an expert? Good luck

[Owenrach]

Please go and see a physio. Where are you based?

[Hugo3596]

There's very few who will treat men who specialise in PN/PNE. There's a list on here........but from memory Dr Baranowski at UCL pain management clinic London, Dr Greenslade and team at Bristol. Someone at Manchester and now Edinburgh.

Just to warn you I was referred to Dr B at UCL mid Dec 13 and have just heard this week that the wait for an appointment is months. Clearly doesn't fit in with the NHS 18 week seen and treated protocol that they keep telling us is set in stone! Of course if you are willing to pay him then he will see you within 2 weeks!

[Hugo3596]

But imho you should try all hands on therapy avenues first before you consider an invasive procedure. If it is PN related then I am afraid there is no miracle cure for it! It is also possible that any invasive procedure including injections could make you worse.

[Flashharry]

Hi

What terrible symptoms! Some of them are similar to mine but I have not had a diagnosis yet. Your pain is certainly neuropathy - burning, tingling, numbness, stabbing. You need this checked out in more depth, look at this web site and you might be able to find a local specialist: pudendalhope.info/node/9 , you could have nerve entrapment, Good Luck

[VFR1200]

contact Dr Gareth Greenslade at Bristol Pain Clinic, expert in this field. Highly recommend.