New Here. My Story. Please help me.
Posted: Thu Jun 06, 2013 10:45 am
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
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
. 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.