Advice on treatments for PN

[Christian]

I'm nervous about writing as I have never resorted to such before...A sign of desperation I guess.

I am a male, mid 40s, and have been diagnoses with Pudendal Neuralgia after 2.5 years of constant pain, prior to which I had experienced misdiagnosis after misdiagnosis from my teens, having experienced periodic flair ups. The times I've been humiliated by being told to go to an SDT clinic or have GP's hint at such things is frequent, even though I have been happily married now for 25 years!

In summery my pain, which will be familiar to some males, is as follows (and forgive the non-technical language): when sitting for more than a very short time (especially on any hard seat), I get an intense burning sensation, followed by numbness, in my penis, and a related stabbing pain running down from roughly the centre of my left hip to the same area. I also experience pain in my right testicle, painful erections, and often a feeling like I have a very painful hard lump in the body of my penis. Unusually (so I am told) I also get a burning sensation when urinating when the pain flares up (my urine and blood tests are always clear).

After extreme persistence with my GP practice I was referred to our local hospital's Pain Clinic, and subsequently to a neurologist. The result of 18 months of visits has been a combination of drugs to help (Pregabalin, Co-codamol/co dydramol), and a successful diagnosis via a nerve block test (successful in that it lessened the severity of the pain from 9 or 10/10 to about 5/6 out of ten for a short period).

A follow up visit to my consultant today concluded that there is little more they can do other than keep modifying the drugs. He said the success rate of any surgery is extremely slim. I wondered if anyone had had any success with physiotherapy (pilates or core muscle strengthening in the lower spine/pelvis region for example??)or can suggest what my other options are (I'm in the UK)? After 2.5 years of just about coping I have been off work now for 2 months, suffering from both pain and depression.

[HerMajesty]

Hello and welcome.
There are successes and failures - I would not go so far as to say surgical success is "extremely slim". The issues surrounding surgery are, 1. has the underlying cause been identified correctly, thus making an attempt at surgery a worthwhile endeavor? 2. How does the individual's body respond to manipulation of the nerves during surgery (this is unpredictable from person to person)? 3. Did you choose a doctor with a good track record (search all doc's names on this board to see patient experiences before jumping into anything!)?
I think you have already seen the problem with medication control, which is that neuropathy in response to nerve compression is a progressive condition. If they continue to drug it without looking for the underlying cause, your condition might continue to deteriorate as it already has been. The bottom line on this is, you MUST become a self advocate and assign yourself the status as the leader of your health care team. If you defer to health care professionals, you are unlikely to get better. They say dumb things like "surgical success is slim so just take drugs forever". Listening to nonsense like that certainly will cause depression!
Physical Therapy: Works quite well for some peoplke depending on underlying cause. A good rule of thumb I have picked up from being in touch with many other patients over time is this: If you go to PT for a few weeks and it makes you worse, but you are told, "it will get worse before it starts to get better", find another PT. If you get the same result, PT is probably not for you. I did respond to PT to some extent (It took me from totally disabled to functional, although I still needed more treatment); but the benefit I got was almost immediate. The first month or 2 of PT were the most beneficial. Whereas, I have seen posts from patients who endured months of painful PT based on empty promises, and it only made them worse. So as to PT, try it. Briefly.
Another important matter regarding PT: Locate a PT or Chiropractor who is able to tell you if your pelvis is properly aligned or if you have pelvic joint dysfunction, usually referred to as SIJD, sacroiliac joint dysfunction. This is a hands-on diagnosis you cannot get from a doctor, only from a PT or Chiro who has extra training in assessment of the bony pelvis. SIJD can be a contributing factor, or sometimes even a cause, of PN.
You will see in my signature I did not have pudendal decompression surgery, I had tarlov cyst surgery. this is because my nerves were compressed by nerve root herniations within the sacrum. This is one of several differential diagnoses; another would be piriformis syndrome (a tight, spastic piriformis muscle entrapping the pudendal nerve). Pudendal decompression surgery itself is most beneficial for somebody who either has scar tissue entrapments of the pudendal nerve, or a nerve which is entrapped between the sacrotuberous and sacrospinous ligaments in the pelvis. It's best, when possible, to determine underlying pathology before acting. A PT can do some of that (evaluate the bony pelvis and the muscles), and a specialized MRI is very valuable. I believe Dr. Filler has a London office and does his MRN (MR Neurography) in the UK; A lot of folks prefer a specialized reading of a 3T MRI but I am not sure if that is available in the UK, I am sure somebody else who replies will know that.
I encourage you to be your own best advocate in finding out the underlying problem and having it corrected. Success is certainly not 100%. There are some excellent self advocates who use this board, who unfortunately have had failed procedures. However there also many, and I am among them, who have had successes. This of course is up to you but I think TRYING is important, because the only alternatives to hope are depression or acceptance. I think there is a place for acceptance if you do try and it doesn't work out. But I don't see how your doctors can expect you to accept this without even trying to solve it.

[Violet M]

I wondered if anyone had had any success with physiotherapy (pilates or core muscle strengthening in the lower spine/pelvis region for example??)

Christian, I don't know your exact diagnosis or cause of your pain but for people with pudendal nerve entrapment, exercise typically makes the pain worse and can further damage the nerve. There are some core strengthening exercises that don't put as much strain on the nerve as others. A good physiotherapist who knows how to treat people with PN should be able to tell you which ones are best for you.


Violet

[Christian]

Thank you so much for the responses so far.

The thought of getting progressively worse is terrifying, and I have seen some evidence of this...for example I forgot to mention that I have developed little feeling in the head of my penis, and a loss of sensation in that area generally.

In terms of an exact diagnosis i have become increasingly aware that I have had to become my own expert and help lead practitioners in the right direction in terms of trying different treatments. i have also realised unless you shout loudly no one hears or frankly seems to care. I am very worried about the cost and am trying to push as far as I can through the National Health Service. But the cut backs are now so great that this area of pain doesn't seem to feature in any priorities.

I am concerned about my increasing bouts of depression, and at this moment in time fear I can't go back to work at all. I forgot to say I'm also on Citalopram and Tamazapam to help with depression and sleeping.

My diagnosis has been difficult as I have a slipped disc at the base of my spine (L5), which confuses the signals. I have had mri scans which only noted the slipped disc, but have in part identified the specific problem being in relation to compression of the pudendal nerve on the left side. I will approach a physio I have some confidence in...but would appreciate some guidance on the best type of scan/test for seeing this awkward nerve!!

If its of help to anyone else I do find walking (in moderation) helps, as does lying flat and stretching: the latter definitely seems to stretch the pelvis area in a positive way.

Please keep any advice coming and if anyone knows of a good doctor/physio in the south central UK please please let me know. If I have to pay for a visit or two and will!!

[molly]

Hi Christian,

I,m also from the UK and have found this an incredibly difficult journey. I,m fron the south west and have all conventional treatments and finally surgery earlier this year. I think its fair to say there is no cure for most people , but there are varoius treatments which work for different people and you need to try the least invasive first .

I have largely funded my treatments but Ithink there are some people in the UK who have had good nhs care.


I have spent a lot of time and money with an excellant pn aware physio based in winchester I could forward you the details on a pm if you,re interested. Otherwise Ican find out if there are any closer to you ,but they are few and far between in this country .

After four and a half years with pn I ambetter than I was in the early days, this is partly due to treatment ,medication and massively modifying my life. I also have wonderful family and friends.

I know how difficult this time is but hang on in ghere and never give up hope.


Kind Regards

Molly

[Christian]

Hi Molly,

Thank you so much for your reply, I have been incredibly low with this of late and daring to come onto this site was a huge step. I would really value a link to the Winchester site/name of the physio as that is within a reasonable journey time from where I live. I'll start searching on Winchester physio sites myself too. Thank you again...

[helenlegs 11]

Hi Christian,
I would say that you have got a good long way on your own so far, without us , but Welcome It requires enormous tenacity actually getting a PN diagnosis in the UK, especially with some existing spinal pathology clouding the issue . I would give yourself top marks for that alone.
I am in a similar situation in that I have had a microdiscectomy at L5/S1, although that was 10 years ago and it was a success. I worked a 44 + hr week for 5 years afterwards, excellent social life, got married etc, etc. (I don't work now)
The medics up here just want to put my pelvic pain down to this (long gone) problem a central nervous system 'pain reading' change (chronic pelvic pain syndrome), or some concocted amalgamation of both. I live in the North East and this does seem to make such a difference (it's more than embarrassing tbh)
I did have a breakthrough a couple of years ago and got to see Dr Greenslade in Bristol and got a pelvic neuralgia diagnosis (mine is sciatic. pudendal, post femoral cutaneous and cluneal nerves at piriformis level, after a fall almost 5 years ago) but my referral to him was never granted, even tho' I did see him on the NHS for over a year, courtesy of an admin error (thank you Bristol admin )
Dr G did write to my GP earlier this year and suggested that I be referred to France (Prof Robert) for decompression surgery, but nothing has happened. The PCT won't refer me to Bristol. . . . so France!!! Sacre bleu! (it's all in the hands of the medical ombudsman now!)
I am not suggesting that surgery is your answer and I would definitely pursue any and all conservative treatments, pain management techniques, physio, acupuncture whatever, you will never know if they could work until tried. The trick is not to go on and on with something that isn't helping as HM said, well the NHS don't actually allow that to happen anyway. From that list however, I have found that pain management techniques help the most.
Currently I am having a course of acupuncture (NHS) It isn't working (already been there,but I paid for the last lot) that didn't work either but I am simply 'going thru the motions' to hopefully get somewhere with the PCT here. Think my next one will be my last (6th)
I am not sure how we stand with PN surgery in the UK at the moment anyway. I think that you will only get as far as a pain pump on the NHS in London (Dr Baranowski) this has worked for some. London (NHS) don't seem to 'believe' in surgery, and the last I heard was that Bristol's list was full and they were taking no more, NHS that is. I haven't been on the forum in a little while (2 months), so not up to date however. I'm SURE there must have been some amazing changes and breakthrough in my absence
Good luck but chin up, I always find being pro active helps, at least it gives one a glimmer of
Take care and let us know what transpires,
Helen