HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.
HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE). If you have come to this website it is probably because you are in pain or you know someone who is in pain. Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.
Visit the website: www.pudendalhope.org or sign up to the forum
I have got to find someone to talk to, I have had two horrendous experiences, prior I was at least walking and semi functioning, but now I cant walk or sit, its excruciating recently having a pudendal nerve injection vaginally that went very very wrong, but I am being told this is normal from dr? How could it be normal to be much much worse off?
I appreciate your time, if this is not the forum can you direct me to where to go, I want to know if anyone else has had similar experiences, are we just left to barely survive after?
I could write down my experience / questions
thank you for your time
The site isn’t setup as a forum. I couldn’t manage it and I also find it doesn’t work for my own pain management but there are some really great forums on Facebook. Great groups of people all around the world gather in the specific groups (search pudendal neuralgia).
If you’re in Australia, I highly recommend a Pain Specialist – I see Pain Specialists Australia and they have helped me immensely.
I found that I had experienced trauma after some activity to the painful area – whether treatment or massage or exercise. I always waited for the flare to pass and sometimes I experienced a leap. But pain specialists are the way to go. Make sure you find a good one. Pain Matrix are another great group but again both are in Melbourne.
Check out my directory page: https://pudendalnerve.com.au/2013/01/26/who-can-help-and-where-in-the-world-are-they/
Take care, I’m so sorry to read you are in pain.
The directors of this organization are Amanda, April, Stephanie, NYT, and Violet. We are all veterans of pudendal neuropathy and you can find us on our forum. We review the latest peer-reviewed literature and do our best to keep current with the latest information available to the PN community. Nevertheless, we are not doctors and we recommend that you seek advice from your medical professional for treatment.