Health Organization for Pudendal Education

Hi Guys

My name is Amit and i'm 31 years old and i live in Sydney, i have been suffering from Chronic Pelvic Pain for the last 5 years. One day i was normal and the next my life had turned upside down. I was rushed to the hospital and diaganosed with prostatitis and given meds which as we all know don't work. Then i saw a Urologist who didnt even ask me about the condition and again just gave me a script for more meds. After seeing a few local GPS i finally saw another Urologist who showed me a picture of the pelvic floor muscles and said i cant do anything for you, no one can and just take neurofen when the pain gets better.

I thought my life was over and i gave up on looking for a cure or relief. I did see a Osteopath who put me on the path that is a muscular issue more than a infection or something untreatable. I found a book called "A Headache in the Pelvis" which was helpfull as it showed stretches you can do and trigger point release. It has helped me a little but everytime i take 2 steps forwards it's 5 back. You really need to follow their protocol which they teach you if you can get to USA...i emailed them ut never got a reply.

I'm now married, work full time and still live in pain every single day, my back, pelvis, legs and stomach are in pain no matter how much i massage them. I play sports and try and excerise as much as i can because relaxing the muscles does help, so does a heatc pack. The worst thing about this condition apart from the pain is the constant running to the toilet to pass unrine, yesterday i must have gone at least 10 times. I have finally found Prof. Vancaillie who i'm seeing on the 15th of this month, i really hope he can shed some more light on this condition which i thought i was suffering alone. If you have suffered or are suffering from Chronic Pelvic Pain i would love to hear from you.
Amit

Hi Amit,

Welcome to our forums and I'm glad you found Prof. Vancaillie. Living in Sydney will make it all the easier for you to attend appointments. Pudendal nerve pain is the same for all of us but if you are male you might like to get in touch with Sunil (Canberra) who frequently posts on this forum.

This condition is very frustrating for those who suffer as well as for the medical profession. Most doctors don't know how to treat people like us and it's because of Prof. Vancaillie and the few Physiotherapsits listed on this website that research is now underway in Australia. Finally something is being done to help us. Don't take the word of a doctor who tells you nothing can be done. They only say that because they don't know about the new research and treatment facility in Randwick. This site is full of information and support. Many of us have traveled from other states and from NZ to seek treatment with Prof. V and Sherin Jarvis. Sunil travels to Brisbane to have physiotherapy with Peter Dornan and is gaining progress there.

Hang in there Amit, you're in good hands now but it's going to be a long treatment plan and everyone is different. At least now you know you're not alone with this problem. We're here to offer help and support as we fully understand what you're going through.

There are 3 of us here from Perth who sought treatment with Prof. V and we're all doing so much better. Unfortunately you'll have your treatment planned to suit you're needs and it will take time. Be patient and do everything the prof. tells you. Don't do anything that makes the pain worse. eg. sitting too long, heavy lifting, walking uphill or upstairs. Pace yourself slowly and don't stress. It is a very stressful time as other people don't know how you feel but we do.

Things do and will improve in time.

Catherine

Hi Amit,
Welcome , Well done finding Professor V, I'm sure he will be able to give you the answers to your problems and of course appropriate treatment.. You are obviously someone who isn't going to give up easily but I would echo Catherine's advice about pacing, sitting etc. Let us know how things progress.
Take care
Helen

Thank you so much for the support guys, i had a ok weekend my physio assessed me on Friday and advised that my pelvic floor is rotating when it shouldnt and thinks there is a very issues with my pelvic floor...he is very intersted in what the prof will say. What does SIJ stand for???

Thanks

Amit

It's Sacroiliac Joint Amit,
Good luck with your appointment with Professor V, not too long away now

Hi Helen,

Thanks i just had a quick read about SIJ it and pain comes in some many forms i guess thats why your local GP cannot diagnose it.
i'm looking forward to meeting the professor but at the same time i have been disappointed so many times that i dont want to get my hopes up.
However - Hope is all we have...

Amit

Hi to all,

I recently met Prof Thierry Vancaillie, after a few tests he adviced me i may have a Pudendal nerve trapped on my RHS - which is weird because my pain is always on the left hand side. He adviced there can be a cross over of the nerves. I'm getting a MRI done next week to confirm the diagnosis and then a nerve block will be performed by the professor. Seems like it is used as a diagnosis tool to see if it is the actual nerve that i causing the pain and isnt actual cure. He recommended accupunture along with physio so it seems like it will be a long road to recovery from whatever is the cause of my pain.

Will update once i get more answers

Amit

Hello Amit,

How did it go for you with the MRI?

Most of my pain was on the R but I had entrapments on both sides. Good luck with physio and accupuncture. I think you should know fairly soon if they are helping.

Violet M

I read these posts out of Sydney with great interest. I am wondering what has happened to botox ? Personally if I had paid to fly to Australia in my early years just to be told that physio and acupuncture were the only offers I would have been devastated. Are there any surgical patients in Sydney anymore ? I would appreciate any news. As a New Zealander I certainly wouldn't recommend a trip across the Tasman if that is all that is now on offer. I had surgery and my health is great, just played 18 holes of golf. My philosophy has always been .." If the nerve is trapped only surgery will untrap it". Can someone update on the downunder protocol these days please ???

The initial treatment options given are physio, osteo, & acupuncture. If that does not help, I think trigger point or botox injections are offered (I did not elect to proceed with these). The only surgery option offered is the ROBERT technique, and is not performed by Prof Vancaillie himself, but another pelvic surgeon in Sydney.