My Story
Posted: Tue Sep 10, 2019 3:33 pm
Hi,
Ive learned a lot from the forum over the last few months so its time to give a little back. Thank you to all those who shared and in particular I wanted to give a shout out to Violet for whom I have huge admiration for, for the time and effort she has put into the site.
I intend to write over the coming months/years as my symptoms evolve in the hope one day my experience will be of use to someone else.
My PN story started 7 months ago.
I felt a pain on the left side of my penis which simultaneously felt cold.
This lasted for in excess of 4 weeks around which time I started to feel a burning pain in my lower back, more precisely in the area around my sacrum.
Weirdly there appeared to be a link between the pain in my back and my penis. When one was sore so too was the other.
Next up I started to have urination issues. Prior to all this I would urinate 6-8 times per day like clockwork.
It dropped down to 3-4 times and at times I had to push myself because I didnt even feel the urge to go.
At its worst I would urinate only approx 50ml every couple of hours which each time was a big effort.
It seems to alternate. The last few weeks have been pretty good but it comes and goes.
I have a stricture from a previous accident and my greatest fear is that I will end up one day having to use a catheter,
I also had terrible constipation for a while during which even with medication it was difficult to defecate.
In parallel with that Im unable to sit without pain in my perenium and anus which disappears when Im standing up, lying down and sitting on a toilet seat.
My penis will some days feel numb while other days its burning.
I also experienced numbness in both feet and around my lower back/buttocks.
I was diagnosed by a neurologist and a neuro-urologist based on my symptoms but also from the results of a nerve conduction test which measured the speed at which signals were sent from my legs up to my back and down again.
The results showed some loss of motor function and sensory loss both on the left side. Also the MRI's, Cat scans and blood tests were negative.
I have a young family with 4 children and Im the sole bread winner so like many of you Im very fearful of what the future will bring.
I have a very supportive family but deep down my heart is broken. All my hopes and dreams are dashed. Prior to this I was very active and someone who made the most of life. Now Im a shadow of my former self.
To those of you are in any doubt as to whether or not you are suffering from PN, my advice is to read up on it as much as you can via the website and the forum (forewarned is forearmed) but ultimately you need to see a doctor to get to the bottom of it.
Im under the impression doctors are much more aware of this condition nowadays at least judging by how quickly I was diagnosed. I would caveat that by saying it will depend on the dr you see. 2 urologists whom I met prior to seeing the neurologist believed my issues to be nerve related however they did not suspect the pudental nerve. Instead they thought it was might be caused by a compression of the nerves in my back.
Just as an FYI I suffered a fractured pelvis and sacrum 10 years ago when I was run over by someone who ran a red light. Ive also been floxed (ie had a severe adverse reactions to an antibiotic from the quinolone family which I will write about in a separate post to create awareness of the danger). I suspect both factors played a role.
Take care.
Ive learned a lot from the forum over the last few months so its time to give a little back. Thank you to all those who shared and in particular I wanted to give a shout out to Violet for whom I have huge admiration for, for the time and effort she has put into the site.
I intend to write over the coming months/years as my symptoms evolve in the hope one day my experience will be of use to someone else.
My PN story started 7 months ago.
I felt a pain on the left side of my penis which simultaneously felt cold.
This lasted for in excess of 4 weeks around which time I started to feel a burning pain in my lower back, more precisely in the area around my sacrum.
Weirdly there appeared to be a link between the pain in my back and my penis. When one was sore so too was the other.
Next up I started to have urination issues. Prior to all this I would urinate 6-8 times per day like clockwork.
It dropped down to 3-4 times and at times I had to push myself because I didnt even feel the urge to go.
At its worst I would urinate only approx 50ml every couple of hours which each time was a big effort.
It seems to alternate. The last few weeks have been pretty good but it comes and goes.
I have a stricture from a previous accident and my greatest fear is that I will end up one day having to use a catheter,
I also had terrible constipation for a while during which even with medication it was difficult to defecate.
In parallel with that Im unable to sit without pain in my perenium and anus which disappears when Im standing up, lying down and sitting on a toilet seat.
My penis will some days feel numb while other days its burning.
I also experienced numbness in both feet and around my lower back/buttocks.
I was diagnosed by a neurologist and a neuro-urologist based on my symptoms but also from the results of a nerve conduction test which measured the speed at which signals were sent from my legs up to my back and down again.
The results showed some loss of motor function and sensory loss both on the left side. Also the MRI's, Cat scans and blood tests were negative.
I have a young family with 4 children and Im the sole bread winner so like many of you Im very fearful of what the future will bring.
I have a very supportive family but deep down my heart is broken. All my hopes and dreams are dashed. Prior to this I was very active and someone who made the most of life. Now Im a shadow of my former self.
To those of you are in any doubt as to whether or not you are suffering from PN, my advice is to read up on it as much as you can via the website and the forum (forewarned is forearmed) but ultimately you need to see a doctor to get to the bottom of it.
Im under the impression doctors are much more aware of this condition nowadays at least judging by how quickly I was diagnosed. I would caveat that by saying it will depend on the dr you see. 2 urologists whom I met prior to seeing the neurologist believed my issues to be nerve related however they did not suspect the pudental nerve. Instead they thought it was might be caused by a compression of the nerves in my back.
Just as an FYI I suffered a fractured pelvis and sacrum 10 years ago when I was run over by someone who ran a red light. Ive also been floxed (ie had a severe adverse reactions to an antibiotic from the quinolone family which I will write about in a separate post to create awareness of the danger). I suspect both factors played a role.
Take care.