Male Pudendal Nerve problems specialist please

[BashBash]

Hello all,

I am 34 years old male and I have been suffering from pelvic pain for 8 months so far. My GP as well as my consultant to whom I was referred by my GP have been treating my condition as Chronic Prostatitis/ Chronic Pelvic Pain Syndrome. However, I have many reason to think that my symptoms are more likely to be related to pudendal nerve problems.

Could anyone please give me an advice about a specialist in diagnosing and treating pudendal nerve problems in men?

Thanks.

[Spizzle]

The first doctor I consulted as well as the first physical therapist I consulted were both way wrong on their diagnosis and assessment of my issues. A second PT thought it might be a hip problem (referred pain), suggested I see an orthoepaedic surgeon, who did x-rays and a hip MRI which confirmed what the 2nd PT had suspected. Two points here: sometimes an experienced PT can be quicker to identify the real culprit than a doctor, and also — try a second or even third doctor if you are getting nowhere with the first.

[Konagirl60]

Hi there. Were you a cyclist? Did you do repeated lifting and /or hip flexion movements at work or at home? It is possible you may have stretched the pudendal nerve.

The other possibiltiy is that a section of the pudendal nerve has adhered to fascia or ligaments in your buttock. Is the pain bi-lateral or just on one side?

How would you describe the pain? Burning? Tingling?

Can you sit on a toilet/ toilet seat with no pain?

How is your sleeping? Can you lie down and sleep without pain and constant throbbing and neuralgia?

The U.S. specialist who helped me has retired. There is definitely a link between bladder changes and prostate pain as the pudendal nerve enervates the area.

I’d it is true pudendal neuralgia you will need three consecutive nerve blocks with anaesthetic AND steroid into the nerve root in your buttock. Fluoroscopy guidance is a must. If three blocks done one month apart do not help the pain then decompression surgery may be needed. I had the surgery and it helped.....no more intractable burning pain.

A low dose of Nortriptyline may help you. Gabapentin and Lyrica seem to help others but they made me go crazy! I got off them quickly. I need my wits about me.

Dr. Beautrant in France is the expert. Could you email him and see if he could help you locate an expert in North America? There is no trained neurosurgeon in Canada that can release the pudendal nerve.

Keep me posted.

[JADRIAN]

My husband has been seeing Dr. Roman Cregg for a few months now and he is AMAZING! We have suffered from pelvic floor/pudendal nerve pain for many years and he is the first physician who has been able to understand the situation and offer solutions. Here's his info: uclh.nhs.uk/OurServices/Con.... Hope it helps!

[Buuldog in reply to JADRIAN]

Hi Jadrian

I am also a male who has suffered with this condition for many years and each year the symptoms have got worse, I was interested in your recommendation for Dr Cregg. I have all but given up hope of ever being free from this and have accepted the inevitable continuing decline.

Could you please tell me what sort of treatment has been helpful for your husband, I can see that Dr Cregg is based in London, this is accssable to me, maybe i could have one last go at improving my condition.

Thanks

[JADRIAN in reply to Buuldog]

Hi, happy to share. We have just started our journey with Dr. Cregg. My husband has had an injection of IV pain medications and last week had pain med injections aimed at the nerves, under anesthesia. Both of these did not help his pain and bladder symptoms so we are now moving on to steroid injections into the pelvic floor. The next step after that will be a neuromodulation implant that has seen good success. We can't recommend Dr. Cregg enough. We understand losing hope as we have suffered from this for 7 years now with many doctors in the US and here trying to help us. You should at least have a consult with Dr. Cregg. He is the most responsive and respectful physician I have ever worked with, and i work with doctors for my day job. Good luck!

[Mike0425]

You're probably right, your issue is most likely Pelvic Floor Dysfunction. I'd strongly reccomend reading thid book- Pelvic Pain Explained: What You Need to Know by Stephanie A. Prendergast and Elizabeth H. Akincilar. I would then reccomend seeing a Physical Therapist who specializes in Pelvic Floor Dysfunction (the book will help you find one). Good luck!

[VFR1200]

Contact Dr Gareth Greenslade at Bristol Pain Clinic, he is a leading expert in this area, he helped me considerably.