Health Organization for Pudendal Education

Hello everyone.

I hope that I have found some sort of sanctuary....
Unbeknown to me, my symptoms started around November when I noticed that when I went to the toilet after walking my dog, my penis had practically disappeared & had to be 'revived' with a shake until it returned to normal. This went on for a while & then just before Christmas, I had the constant urge to urinate, even after just going. The odd thing, unlike prostate problems the desire disappeared when I went to bed. This continued & a visit to the doctors was made. The doctor pursued the prostate route & gave me a physical & took a number of bloods & a urine sample. Everything came back fine.
Between that appointment & the next other symptoms manifested such as a tingling feeling in the groin area, aches in the testicles, sensitivity & aching in the penis during sex & discomfort in the perineum when sitting. Again, all of these symptoms disappeared when lying down. I took an article on Pudendal Neuralgia to my doctor who was reluctant to recognise it, more bloods were taken & Tramadol was prescribed.
Now, many of the symptoms have subsided. It is as though the condition started at the front & has worked its way to the back as my current symptoms are an aching anus & soreness in that area as well as the buttocks. The doctor has become more willing to recognise that this may be PN but neither of us is 100% convinced about the diagnosis. My worry is that because there are so many symptoms, I may indeed have PN but also have something else that is being missed because it is being bunched in with the PN symptoms. Does anyone else have pain in & around the anus?
The other symptoms have subsided but not gone entirely. If this is what I have, it really is a wretched, miserable condition that is starting to affect my mental health as I am starting to worry that there may be other underlying illnesses.
Any shared experiences will be gladly received.

Pain around the anus is a common complaint in people with PN -- since a branch of the pudendal nerve innervates the anal sphincter. A different branch of the pudendal nerve innervates the urethral sphincter. This could explain your multiple symptoms. Many physicians recommend having an MRI of the lumbosacral, lumbosacral plexus, and sometimes the pelvic area to rule out anything concerning, that might be contributing to your symptoms. I don't know what your physician specializes in -- was it a GP? If there are any physical therapists in your area who are knowledgeable and experienced in assessing patients with pudendal neuralgia or pelvic pain you might get some additional information from visiting one of them.

Violet

Hi Violet.

Here in the UK, PN seems to be something of a mystery. I have only been dealing with a GP and because of constraints on our health service, they are reluctant to refer patients to specialists. Even getting an appointment with my local GP has a 4 to 6 week lead time. As I said, all of the symptoms that I have had have disappeared one by one and now I just have the aching in the buttocks and anus. These problems only manifest themselves when I sit for a period of time, at night in bed & when I awake I have little or nothing in the way of pain. I have another appointment in a few weeks time so I will request a referral, maybe I will be one of the lucky ones for whom the symptoms disappear as mysteriously as they arrived..

Well, there are some excellent PT's in the UK - not sure if they are near enough to you, but if the aching continues it could just be due to overly tense pelvic floor muscles and a little physiotherapy might help get those muscles relaxed. Hopefully, as you say, it will all disappear.

Violet

You could always check out the book "A Headache in the Pelvis" which is a good resource for many different types of chronic pelvic pain. You may have a PN manifestation like proctalgia fugax... Good luck!

Hi all..

Sorry for the tardy response, house moving is pretty time consuming. Since my initial post, many of the original symptoms have subsided of their own accord but do come & go very occasionally. More lately I have had a fluttering sensation in the lower abdomen that goes no higher than my navel, no pain just annoying. Bowel & urinary functions vary from week to week from normal to frequent. I am also experiencing some bloating, symptom similar to IBS. I am getting mighty confused as to what is possibly PN & what is not connected. How I crave normality...

PN often does not occur all by itself. For me, the symptoms that started in one small area of the pelvic floor, slowly spread to include all of the pelvis, some abdominal and groin symptoms, and involvement of one leg due to the sciatic nerve being pressed on by the piriformis muscle. I had severe IBS associated with chronic constipation which I have mostly solved by taking magnesium citrate tablets daily. I don't know for sure what's causing all of your symptoms or which of them are PN related if any but I can tell you it is very common to develop multiple symptoms with PN.

Violet

Hi. I seem to have many of the same symptoms and like you it has spread to the rectal area. Mostly a tingling sensation with minimal actual pain. But I agree it’s wrecked my mental health because I worry about it getting worse daily. Any updates?