PN escalating

Dr Thierry Vancaillie

PN escalating

Postby dale » 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
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Re: PN escalating

Postby janetm2 » Fri Jul 11, 2014 12:03 am

Dale,
I have read here of many that seem to go years even 10s of years trying to get diagnosed like yourself with many doctors who are clueless. You are not alone. That is one of the most frustrating thing to realize the pudendal nerve does so much and crosses many ares of doctors who do not seem to know about it. I was lucky once my pain became constant to wind my way to PT in a fairly quick time. Since diagnosis I have gone back to the previous doctors and provided the "letter to medical professionals" that is in the FAQs off the homepage as well as every new doctor I see as my way of educating the medical field. I am sorry you are having so many issues but glad you are finally getting some treatment. I think my spasms were the early stages and by the third time and sitting on a hard chair in pain and not moving just exacerbated the whole thing and I ended up with the constant pain and entrapment. It can take time as even the constant pain got worse over that year until surgery. You also most certainly are not crazy, I think sometimes the doctors just do not know what to do and just cannot seem to admit it. Hang in there you are with a good dr and should be on to better days ahead.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: PN escalating

Postby dale » Thu Jul 17, 2014 12:13 pm

Janet thanks for the reply , I have just seen a fantastic physio yesterday at the spine clinic. she is aware of pudendal issues and is of top of the need for function of the internal muscles etc that work to keep everything in place where it should be. I am having another evaluation in 8 days time regarding what I should be able to do as well as what I shouldn't do while I have this curse. I have a very good vibe from this pt and cant wait to see her again. it is reassuring that I don't have to try and explain what is going on as she knows the pit falls of it all. I have got looks of disbelief from two other doctors I have seen just because they are unsure of what to advise me on.
regard dale
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Re: PN escalating

Postby janetm2 » Thu Jul 17, 2014 10:26 pm

Dale,
This is wonderful news. I am so glad you have a good PT, they are really sometimes the most helpful. Not that I could have made it in my case without the surgery and surgeon but especially if you just have muscle issues PT can help if PN aware. Keep us posted and best of luck.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: PN escalating

Postby bikelover » Fri Jul 18, 2014 1:35 pm

Dale I dont have incontinence issues, more of sciatic and pain in the butt while seating issues, but have you tried biofeedback therapy for your incontinence issues?
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Re: PN escalating

Postby Violet M » Sat Jul 19, 2014 10:19 pm

Dale, my PN symptoms started slowly and escalated over 1 1/2 years until I was diagnosed with PN. Some people have PN symptoms off and on for years. So, yes, PN can start out with very minor symptoms but escalate slowly over time. Falls are one of the possible triggers of PN but of course the insurance company is not going to pay for something unless they have to. Feeling very sad for you. :(

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PN escalating

Postby dale » Sun Jul 20, 2014 3:09 pm

thanks for the reply's, I just looked at bio feed back on the net and it looks interesting. I will talk to one of my specialists about it. the PN that creeps up over time which makes you think your crazy is worrying to say the least. I thought I had prostate issues, then cancer of some sought, then I thought I was having mental issues until I saw a PT who has worked in conjunction with WHRIA in Sydney. with all that going on I wonder how many people suffer and don't know the real cause. since my experience I tell everyone about the condition and to my surprise I have discovered that two people that I know are suffering with some of the symptoms and they are going to see my PT who first diagnosed me. one a mountain biker and the other a surfer who has had a few big falls big enough that when landing on the board it broke. so hopefully they haven't, but if they have I hope they get treatment quicker than mine.

the sciatic pain for me was extremely bad until I had the epidural, since then I have had intermittent buttock pain which is seeming to get stronger every time it comes back. this is worrying me as I was almost clear of the pain until a couple of days ago. tonite while sitting the pain was coming in waves and spasms but when standing it was pretty good with only a bit of pain. took 2 temgesic tablets 40 mins ago and bingo it has settled to just a light ache with no spasms. the need to pee sensations are what I miss, as they say "you don't know what you appreciate until its gone". well how true that statement is. I am having a lot of pain in the legs which is not sciatica I don't know why I am having this, is this another issue with this PN problem?. the muscles around the spine are not doing their job at the moment so I will be doing something about the core part as the journey continues. the insurance company contacted 3 days ago and want me to see one of their medicos to determine if I have a issue that needs attention. hello 6weeks off work etc surgeons, rheumatologist, physiotherapist, WHRIA in Sydney, urologist. I would like to think I have been punished enough. I just want some common sense to prevail and get some treatment.

once again thanks to who replied, Dale
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Re: PN escalating

Postby Violet M » Sun Aug 03, 2014 7:04 am

dale wrote: I am having a lot of pain in the legs which is not sciatica I don't know why I am having this, is this another issue with this PN problem?.


It depends on which part of the legs. If you have PN typically there is a lot of pelvic floor tension. Tension in the obturator internus may cause burning down the thighs. Have they ruled out any problems in your spine that could be causing the leg pain? It's not unusual for PN patients to have mutliple musculoskeletal issues that can involve pain in more areas than just the pudendal nerve distribution area but you also have to consider spinal radiculopathy as a possible cause.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PN escalating

Postby dale » Wed Sep 03, 2014 2:17 pm

Hi all, an update. on sat the 23rd of aug i went in to the prince of wales hospital where i had the proposed botox injections. this was performed by Prof Vancallie all went well on the day, the doctor advised me that he had to inject a lot of the botox to get things where he wanted them. he had a follow up talk at the hospital around 5pm that day and told me incontinence issues to be a expected. well he was not wrong. from my waist to my knees i was numb for 3 days after this treatment. i spoke to the nurse at the clinic as i was worried that i was peeing to much without notice but they assured me this was the case with treatment with some patients. the pain in the groin has changed dramatically and i notice that my sciatica has changed also. groin has decreased but sciatica is increasing. over all the sensation in the butt is still there, but it is different not as defined. when i go to walk i feel as if my legs are not going to hold me up, it feels like they quiver high in the groin as i straighten up prior to stepping. while i haven't fell i feels like i could.

i have a lot of issues with no control over my bowels at the moment along with my bladder. while i am going thru this i keep remembering what the doc said to me, wait for physio in 4 weeks and things will get better. i am hanging on these words of wisdom as it can't get any worse.

i am wondering has any other person experienced anything like this and ended up with good results.

Violet, as far as spinal radiculopathy the sciatica issues i am having apparently are related to an s1 disc bulge. the surgeon said that my physiology is different, and the pudendal nerve attaches high on the s1 nerve root branch set up. i don't really understand what he is talking about but i take his word on it. hopefully i will get to see the surgeon after i have some physio to see if there is any merit in having back surgery. the pains that i have been seeing on the inside of the legs apparently has been fired up buy the pudendal nerve phenomena according to the prof.
thanks in advance: dale
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Re: PN escalating

Postby Violet M » Sat Sep 06, 2014 4:25 am

Hi Dale,

Sounds like a tough time you are going through. I'm sorry. I haven't tried Botox so I can't really comment much on it but I saw a video on youtube by Dr. Beco that you might be interested in. I know you are trying to prove that the fall at work is what triggered your problems. This video discusses falls as being a common trigger for PN. http://www.youtube.com/watch?v=nfZCYSeWbcE

Hope things get better for you soon.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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