My story (in progress) and inspiration

[conradin]

This is my story about my battle with pelvic myoneuropathy...

I was a network enginner/system administrator/computer consultant by trade, and I constantly worked overtime. By March 2003 the company slowly winded down, and I took this oportunity to travel and start my business.

After having non stop traveling by driving for a few months, my partner noticed that my testicles did not hang in the right direction...I took no notice of it. By late summer of 2003, I noticed that I would get tired for no reason, usually around my pelvic area, and that caused me to sleep long hours without cause. Exhaustion..from a very tired pelvis.

One day in September after having making love to my partner, my testicles and the surrounding area was in sharp pain, the pain then migrated to my prostate. Since I had a history of epididymitis, I took no notice of it, and took Cipro. I then saw a urologist, who without any examination, claimed that I had prostatitis (or epididymitis) and prescibred me Cipro.

It went from bad to worse as the testicular pain spread to the general pelvic area. My bladder began to malfunction. Incontinance, seuxal dysfunction, urethral pain, scrotal pain, erectile pain, unable to walk, intestinal pain, nausea, pain during urination and after, pain during and after ejaculation...

One doctor diagnosed me as "pudental neuropathy", but did not prescribed anything for it...nor told me what to do with it. Most considered this as either "in my head", or as an infection. My chiropractor actually took the time to exam me to see if I had hernia...something that no urologists ever did bother to examine. I have taken all sorts of tests rangign from CAT to MRI to all sorts of blood, prostate, and urine tests. Cystography was also performed. None came up anything wrong.

The first sign that this was not an infection came when I was sent to an emergency room in mid October of 2003, and was prescribed narcotic painkillers. Once the medicine was working, I realised that the feel of the pain was mechanical, not infectional. I could pinpoint the location of the pain..such as which muscle or which part was giving me problems. My partner then started to do some leg stretches for me, and amazingly it relieved some pain. This had me start thinking about the Stanford/Wise-Anderson Protocol.

Eventually I came to Stanford to see Dr. Anderson in December of 2003, who not just diagnosed me with pelvic myoneuropathy, but confirmed what I long suspected: that this was a muscular and nerve problems, at least in the mechanical sense.

It has been a long road since. At the height of my illness I suffer from testifular pain, scrotal pain, pain around my prostate, pain around my anus, pain around my lower back, bladder malfunctions, intestinal malfunctions, unable to walk, etc. Anything that is below my navel could and had fail, and would be in pain for any type of activities. I would be bedridden for weeks, not days, and sometimes drugged to sleep for weeks.

The internal therpay really helps by relieving all the pain associated with the levator ani. It was tough at the first month, but after awhile I got used to it. After 40 sessions, it is more of my job than the therapist job: the therapist now uses her finger to serve as a guide for me to relax whatever part of the levator ani muscle that is having problems. Meanwhile the stretching which both the therapist and the "Headahce in the Pelvis" Book eliminate pain NOT associated with the levator ani. By March 2004 I can walk again. Dr Anderson prescription of valium and dioxepin also helps calm the nerves and reduced flare ups. As time went by, the paradoxical relaxation technqiue which Dr. Wise taught slowly took over what the valium did. At of now I only need these medications when my bladder is out of control. Biofeedback, while used occasioanlly, is a good aid for guiding me which muscles to work on.

When I started to have this illness, my pain is generally a 7.5 /10, every day, and I was totally bedridden. It was impossible to read or do anything else, as the pain had totally incapacitated my mental functions.

Now it is 3/10, and only every nite, and I only am bedridden once every week or two weeks. Most of the non levator ani problems (like incontinance, bladder malfunctions, leg cramps) also becomes rare. By August 2004 I have regained most of my mental facilities, and was able to read and programming computer again, although still rely staying in bed most of the time.

I genuinely believe my illness is auto immune related, that translates into a muscular neuro illness. I can now timed pretty accurately when my flare up occurs: inevitably they occur whenever my psoriasis outbreaks.

It is a long way to be healthy, but at the rate of two steps forward and one step back..I'm glad the Stnaford protocol is working for me. I have tried just about everything else (antibiotics, chinese medicine, accupunture..etc)...nothing works.

A short note to those who have need inspiration: I am also a motorcycle racer. This illness hit me when I was doing my final race of the season 2003, and I almost seriously injured myself as the pain overpowered my ability to perform while the machine was at 180mph at certain corners of the track (I was unable to hang on because my leg began to cramp due to the illness). However, through the Stanford/Wise-Anderson Protocol, lots of training and streching, my health is somewhat in a better situation. Racing is a way for me to gauge my progress, as each race date signifies a milestone for my recovery. In July I got my first trophy. So for those who are in pain...don't ever give up. (PS. I always do paradoxical relaxation and streching in the pits prior to a race..it is not just good for the illness, but it is good for sports in general!).