New Here. My Story. Please help me.

[David S]

Hello Everyone,
I am here to find out if my illness is PN and if there is any hope for me. I have been chronically ill for 35 years, I am truly desperate.
This is a long story but I will do my best to be concise.. My symptoms came on suddenly at the age of 17 and have continued all day, every day until now. I am 52.
The main symptom is an unbearable feeling in my bowel / anus. The following expressions are how I've found myself trying to describe it to others.
"as if there is something the size of a golfball to tennis ball stuck in my anus", "as if my anus is totally compacted with concrete", " an unbearable feeling of numbness, which makes me feel cut off from myself" "a feeling of total blockage and the need to force out this mass inside me", "as if my anus has been pumped full of air" ," " like I'm dragging around a very heavy wieght inside my back passage", I could go on but there's probably no need...I do not know anymore which is worse, the "living death" numbness, the discomfort and pain or the desperate isolation it has caused. This symptom makes me feel utterly de humanised,so much of the time I can barely function. I feel that I am in a prison. I cannot begin to do justice in words to how this has totally compromised my life and made being "alive" a living hell. Other symptoms effect my genitals. There is a constant feeling for the need to urinate even though my bladder is empty. At times I experience an uncomfortable "achey fullness" feeling in my penis. Very occasionally the pain can seem to shift to being "in the front" as well as being "in the back". Very minor in comparison, but there is also aching lower back pain and a regular soreness just upper left of my coccyx. It's almost impossible to relax, I have huge difficulty concentating and experience dizzyness, blurred vison, brain "foggyness"etc. All these symptoms are present upon waking and increase throughout the day. In recent years I have tried to challenge the condition more and have forced myself to be more physically active which has only resulted in an increase in the intensity of the symptoms.
For 35 years I have tried to explain and have pleaded for help from doctors but they have been clueless as to what is happening to me, although I have had countless mis diagnosis', vague half diagnosis', treatments, therapies, and procedures. All of which have never helped or given any relief whatsoever to this horrendous condition. I have had several colonoscopies, a brain scan, a CT scan, pain management, my mercury fillings removed, the list goes on and on. I've tried every alternative medicine option I can think of, accupuncture,homeopathy, macrobiotic diet, hypnotherapy etc etc.

It has been repeatedly implied to me by doctors that it must be "all in my head" and as a result have had psychiatry , counselling, cognitive behavioural therapy etc, all leading absolutely nowhere. Countless courses of anti depressants only seem to make things worse, if that's possible.
I am an intelligent and highly motivated man who's potential has been decimated by this illness. My work life, personal life,finances, you name it, have been ruined. As a result I have become very isolated, I have now lived alone for 27 years.I'm severly depressed,angry, anxious, I now have insomnia and I'm utterly tormented. It seems as though no one can understand and I've practically given up trying to explain to anyone any longer. How I've found the strength to keep going I do not know.

I've only just now found this site and heard for the first time of "Pudendal Neuralgia". It does sound like the condition I have but how can I be confident in that after my history?. Do I have PN? .
As opposed to being elated as to maybe having found the answer and possibly a cure I am now very worried for the following reason.

The closest I've ever got to a diagnosis that makes any sense is from a specialist at St Thomas' Hospital pain clinic in London. It was suggested to me here that it could be a nerve problem and I went through with the scary procedure of having a neuro modulator fitted. Sadly it had no positive effect and I was told that they could do nothing more for me. I do not recall throughout this treatment the term "Pudendal Neuralgia" being used though now I am mortified to think that this is what they were treating and therefore I cannot be helped??
So once again, can someone please give me an idea as to whether they think I have PN and if so what treatment options or hope might there be?
If anyone can help I will be so, so grateful. Thank you.
David

[DnS]

So sorry for your lifetime of miserable pain. I hope someday they will be able to find a way to treat this wicked PN curse. I am just trying to psyche myself out and pretend I don't feel any pain. Ha I can do that for all of about 2 to 3 minutes. I guess I would recommend that you see a doctor that specializes in PN and hopefully they can give you some answers and better yet treatment. This website has a list of doctor recommendations. All the best you and stay strong!

[Rosemary]

Hi David

If you go to the Home Page on here you will find a list of UK PN doctors who may be able to give you a diagnosis.

This thread http://www.pudendalhope.info/forum/view ... =32&t=4272 has a post by Dr Ruth Jones who is a UK PN aware physiotherapist which may be another way towards diagnosis. There is a list of physios on the home page too.

I am sorry that you have had this for so long - knowledge in the uk seems to be minimal but looks like set to change - experienced doctors in Nantes may be another close by option - i believe a contact for them is a lady called Judy Birch from the pelvic pain support network - someone will correct me if this is no longer the case.

Rosemary

[calluna]

Hello David

So sorry for your years of pain, there are no words really.

The 'foreign body' feeling is one with which most of us are, sadly, very familiar. And it goes on from there, of course.

There are not many consultants in the UK with knowledge of PN. On the home page of this website you will find a list of doctors - the UK doctors are here. Please note that some of them are surgeons and some of them are diagnosticians, the people to see first are not the surgeons. If you are in London then I'd think that Dr Baranowski is perhaps the person to see, elsewhere then Dr Greenslade or Dr de Mello.

I do hope that you can find some answers at last. (I have had all my treatment through the NHS.)

[helenlegs 11]

I am shaking my head David but not in disbelief.
It's an absolute travesty, made worse because the 'all in your head' diagnosis is so very difficult to shake off.
I hope that you are on the right track now (and it does sound very likely) and with the right help you will be able to move forward. I can not add to the good advice and info already given. Welcome however, but so sorry that you have had so much suffering, very probably without the correct medical support, diagnosis and therefore targeted treatment.
I can identify with the foreign object too; my pudendal symptom manifests itself as a knife in anus but it is not constant as you describe and follows the path of the nerve there (I can tell as a 'prod' reproduces it in the exact same place every time) However, the foreign object symptom is most definitely a nerve issue, as I also have this in the back of my thigh (sciatica but pelvic entrapment too) but here it is constant. I feel as if I have a log or large, long stone there, which gets bigger as the day goes on, the more I move or sit. The pain builds up around this 'object' which I take to be a densely numb area ( I have no cutaneous feeling to the back of my thigh, it is really densely numb) The pain is a vice like grip, surrounding the expanding stone usually by p.m. onwards. You may relate to that too, just not in your thigh . Of course numbness is nerve associated. And YES! to the heaviness too. I have sciatica both sides, although one much worse than the other. Significantly the worst leg is just so heavy, which is all nerve related of course.
By the way I have had nerve conduction studies that show sciatic entrapment (their words) but my spinal MRI is clear.
Unfortunately no one here (UK), seems to offer a sensory pudendal nerve test to 'prove' a PN diagnosis; although it has been mentioned that this test may not show a problem anyway when one does exist. I would definitely pass a heat/touch pudendal test and again have one side more numb than the other. Are you the same? or are both sides the same degree of numbness?
I just wish that medics would make these symptom to diagnostic connection sooner!
Take care,

Helen

[Selbourne]

"as if there is something the size of a golfball stuck in my anus"

The most classic symptom of chronic prostatitis,, pal. u r at the wrong site

[molly]

Hi Selbourne,

I to have had golf ball in the rectum symptoms, I do not own a prostate any ideas?

According the the Headache in the pelvis book these symptoms are thought to be due to one of the pelvic muscle groups in spasm. Have,nt got the book in front of me so can,t quote which ones.

Molly

[David S]

Thank you Molly.