Health Organization for Pudendal Education

Hi there,

I have been diagnosed with PN. Have the usual pain and urinary retention. Was wondering if any one in Oz has had success with sacrel stimulation.
Any info would be much appreciated.

Melissa

Hi Melissa,
Not sure if i can be helpful but I have PNE and had a nerve block which worked very well for me. If you haven't already done so, I'd suggest you see Prof. Vancallie in NSW. He's an excellent dr and may be able to give you alternative advice in relation to treatment for your PN. Goodluck and sending well wishes your way.

Hi Melissa,

I have tried a peripheral stimulator which covers the nerves outside of the sacrum. Unfortunately it wasn't making enough of a difference to warrant getting the permanent implant. I may go in for another week long trial in the next few months which will try up into the sacrum itself.

I was told this approach is the most successful by the Boston Scientific staff. My pain is primarily rectal.

Gday Melissa,

I strongly recommend you go to www.pudendalnerve.com.au.........it is a website made by a Melbourne lady called Soula and she has a stimulator/implant at the base of her spine. She has pudendal neuralgia and her website is a great resource for global and Australian PN information.

Btw - I recommend you going to Dr Vancille at WHRIA, (Women's Health and Research Institute of Australia) in Bathhurst St, Sydney. He has a multidisplinary clinic. Their physio Sharin Jarvis is really understanding and helpful. Have you tried releasing the pelvic floor internal trigger points on your own? She teaches you how too do it.

I am considering botox and then possibly a nerve block if the botox doesn't work. I have a TENS machine which helps distract my body by sending electrical pulses where I put the pads eg: my lower back......

Are you in Sydney? x