PN escalating
Posted: Thu Jul 10, 2014 9:31 pm
hi, can anyone that has this problematic pudendal pain let me know how long theirs took to get hold. I have been looked at like i'm nuts when I told them, being "Doctors and specialists" when my issues started creeping in after a fall at work.
I didn't understand what was really going on as I thought I was having prostate pain and was worried that was going to be a issue, along with the incontinence that was happening at the time I was convinced that is what it was.
fall in jan 2013. lot of back pain and discomfort, went and seen a doctor to let them know I was feeling saw all the time, about a month later I started having real problems when sitting as if I was unable to take waight on the sit bones. the doctor suggested the bulging disc in my lower back might have something to do with it. a bit later on I went and started physio I think march 2013 which was a reasonable next step. well the physio was not really helping a great deal apart from the fact that the physio kept saying I think you have a sacral issue. it took some time but I had an xray didn't show any thing. as this time went on I started to have more events ie semi erections, weeing myself and starting not to be in control of my bowels. I was having all sort of thoughts by know have I got cancer, have I a tumour some where, do I have as earlier mentioned prostate issues. after some tests etc I was no further ahead. by now this was may 2013 went and saw back specialist, paint specialist and physio still no real answer apart from the sciatica I was experiencing will probably go away. the physio I told about the incontinence issues and she said I still think you have a sacral issue.
Well the priaprism issues were still happening along with the other issues. by July/August 2013 I was getting bad could stand for long hurting to walk with pain into legs and groin/saddle areas, I could not sit for long periods either which the doctors kept saying its your lowerback just giving you grief. towards the end of august I started to wee and not be able to control my bowels all this was ramping up. I was getting issues at work to the point I had to carry 3 changes of clothes in case accidents continued to happen. all the while my medications kept changing to to see if there was something that could help these issues nothing worked. towards the end of august I was at work and the pain was unbearable not weeing one morning for 15 hrs approx. I had spasm that bad I couldn't stand I was laying over the computer chair for relief, I was trying to do my work by 11.00 am I had enough I had a major bowell eruption is what I call it and I peed myself in the work shop at work as well as collapsing once again with out warning.
This was enough I went home and went to hospital to see what was going on. I stayed in hospital for 12 days approx. and they were all scratching their heads. continually peeing myself with bowel eruptions they were stunned. xray mri ct myleogram proved nothing so I went home. a couple of months went by and I was asked well what is going on and I couldn't get a real answer had another test to check by a Colorectal Surgeon and it showed I had nerve issues but they couldn't explain why . By now I was giving up until I was seen by PT Jane Barker who's specialty is pelvic floor disruption, around I think jan 2014. when talking to her about all the symptoms she said you are not insane I believe you and I think you have pudendal issues. never hearing of this I was shocked that all the specialists etc did not pick up on this. well jane organised for me to see the professor at WHRIA but it took until the end of april 2014 to get into see prof van and it was confirmed in his opinion while no compression I was suffering from PN and pelvic floor issues. apparently my back l5/s1 is a contributing factor with this also is a concern. prof v along with Sherin Jarvis recommended botox which I am still trying to get the insurance company to agree too. Unfortunately they the insurance company have had a run in with prof v and wont go ahead with treatment with out a report stating what, why and when this could have happened. believing that the fall is not the instigator of the issues that I currently have. so im up up against it.
call me cynical but I have been off work for the past 6 weeks as work don't want me back until a treatment plan is in place. I still fall with out notice apart from spasm In the saddle area, I still am having pria prisms etc, still peeing myelf and still having sensation I have a brick in my butt with uncontrollable bowel erptions. talk about do your head in. There is not much I can do at this point until the insurance company agree to send me to WHRIA in Sydney. What a waste of money paying me to stay home at a reduced rate I might add knowing there might be a treatment available to help???
So the issues are they believe that my symptoms took to long to appear hence they believe it is not due to the fall at work jan 2013. Is there any one else with symptoms that crept up and got worse as time went on relating to pudendal neuralgia. I really would like to hear of anything simular to my problems. I now know I was not insane and that some times takes a bit of time to find out what is going on, but 18 months come on. after talking to PT Jane Barker she said I thought after a couple of months of what I was going thru, a pelvic floor physio would have been an earlier option seeing as I had incontinence issues?? go figure.
Thanks to all, this board has been informative beyond belief. Too bad the doc's don't pop in to have a look off and on.
regards Dale
I didn't understand what was really going on as I thought I was having prostate pain and was worried that was going to be a issue, along with the incontinence that was happening at the time I was convinced that is what it was.
fall in jan 2013. lot of back pain and discomfort, went and seen a doctor to let them know I was feeling saw all the time, about a month later I started having real problems when sitting as if I was unable to take waight on the sit bones. the doctor suggested the bulging disc in my lower back might have something to do with it. a bit later on I went and started physio I think march 2013 which was a reasonable next step. well the physio was not really helping a great deal apart from the fact that the physio kept saying I think you have a sacral issue. it took some time but I had an xray didn't show any thing. as this time went on I started to have more events ie semi erections, weeing myself and starting not to be in control of my bowels. I was having all sort of thoughts by know have I got cancer, have I a tumour some where, do I have as earlier mentioned prostate issues. after some tests etc I was no further ahead. by now this was may 2013 went and saw back specialist, paint specialist and physio still no real answer apart from the sciatica I was experiencing will probably go away. the physio I told about the incontinence issues and she said I still think you have a sacral issue.
Well the priaprism issues were still happening along with the other issues. by July/August 2013 I was getting bad could stand for long hurting to walk with pain into legs and groin/saddle areas, I could not sit for long periods either which the doctors kept saying its your lowerback just giving you grief. towards the end of august I started to wee and not be able to control my bowels all this was ramping up. I was getting issues at work to the point I had to carry 3 changes of clothes in case accidents continued to happen. all the while my medications kept changing to to see if there was something that could help these issues nothing worked. towards the end of august I was at work and the pain was unbearable not weeing one morning for 15 hrs approx. I had spasm that bad I couldn't stand I was laying over the computer chair for relief, I was trying to do my work by 11.00 am I had enough I had a major bowell eruption is what I call it and I peed myself in the work shop at work as well as collapsing once again with out warning.
This was enough I went home and went to hospital to see what was going on. I stayed in hospital for 12 days approx. and they were all scratching their heads. continually peeing myself with bowel eruptions they were stunned. xray mri ct myleogram proved nothing so I went home. a couple of months went by and I was asked well what is going on and I couldn't get a real answer had another test to check by a Colorectal Surgeon and it showed I had nerve issues but they couldn't explain why . By now I was giving up until I was seen by PT Jane Barker who's specialty is pelvic floor disruption, around I think jan 2014. when talking to her about all the symptoms she said you are not insane I believe you and I think you have pudendal issues. never hearing of this I was shocked that all the specialists etc did not pick up on this. well jane organised for me to see the professor at WHRIA but it took until the end of april 2014 to get into see prof van and it was confirmed in his opinion while no compression I was suffering from PN and pelvic floor issues. apparently my back l5/s1 is a contributing factor with this also is a concern. prof v along with Sherin Jarvis recommended botox which I am still trying to get the insurance company to agree too. Unfortunately they the insurance company have had a run in with prof v and wont go ahead with treatment with out a report stating what, why and when this could have happened. believing that the fall is not the instigator of the issues that I currently have. so im up up against it.
call me cynical but I have been off work for the past 6 weeks as work don't want me back until a treatment plan is in place. I still fall with out notice apart from spasm In the saddle area, I still am having pria prisms etc, still peeing myelf and still having sensation I have a brick in my butt with uncontrollable bowel erptions. talk about do your head in. There is not much I can do at this point until the insurance company agree to send me to WHRIA in Sydney. What a waste of money paying me to stay home at a reduced rate I might add knowing there might be a treatment available to help???
So the issues are they believe that my symptoms took to long to appear hence they believe it is not due to the fall at work jan 2013. Is there any one else with symptoms that crept up and got worse as time went on relating to pudendal neuralgia. I really would like to hear of anything simular to my problems. I now know I was not insane and that some times takes a bit of time to find out what is going on, but 18 months come on. after talking to PT Jane Barker she said I thought after a couple of months of what I was going thru, a pelvic floor physio would have been an earlier option seeing as I had incontinence issues?? go figure.
Thanks to all, this board has been informative beyond belief. Too bad the doc's don't pop in to have a look off and on.
regards Dale