Health Organization for Pudendal Education

Hi guys,
I've been struggling with pelvic, back and vulval pain for the past 5 years and have had the myriad of diagnoses - vulvar vestibultitis, vulvodynia, thrush (despite no positive thrush test), weak pelvic muscles etc. Some savvy Internet research led me to Prof Vancaillie, whom I saw a couple of weeks ago for the first time. He said I have an irritated pudendal and cuneal (sp?) nerve, bulky pelvic floor muscles, and a problem sacroiliac joint. For the first time in 5 years I felt that someone perhaps knew what was going on with me, what a relief! I also saw Sherin and she suggested Botox injections, dilator exercises and lots of PT.
I guess I'm a bit overwhelmed by all the new info, and starting to feel I may have to find a new career (work in a desk job, 5 days a week which seems to be the worst thing for PN...)
Having first PN block on Saturday and Botox injections...slightly nervous! Anyone out there had the procedure done at prince of wales hospital with prof Vancaillie? Any advice for a newbie appreciated
Susie

Hi Susie,

First of all welcome to the PN forum. I am from Perth and traveled to Randwick many many times to be treated by Prof. Vancaillie and Sherin. They are the first team in Australia to undertake our plight in treating people with PN. You can read my story in these forums. We have a section here for Australian & New Zealand sufferers. (yes, they come from NZ to see Prof. V and Sherin.) There are 3 of us here from Perth too and wer'e doing pretty well but it's taken many years to get better. You're in a better position than us as you live in NSW and you have the advantage of Prof. V's expertise now that he's treated many, many people.

You are fortunate to live in NSW as some of us have traveled so far to get the help we need. We now have a few doctors here in WA who are interested in learning about PN.
You are in very good hands and don't be afraid of all the things you might come across in this website. Your treatment will be a long process so prepare yourself for that.
Any questions you want to ask you're in the right place. The people on this forum have been through what you're going through and absolutely understand how you feel.

I will send you a private message with my phone no. and you can call me any time. All the best with your nerve block and Botox. Try not to stress too much.

Catherine

Hi Catherine,

Thanks so much for your reply, it's such a relief to know there are other people out there.
I just read your story on the forums and i found it really moving - you have developed a wonderful attitude of strength that is inspiring, especially your ability to take care of yourself and ignore the negative comments of others about being lazy, or it being all in your head - this is something I find particularly hard!

I am glad you have had success with Prof Vancaillie... yes it's great to have him so close in NSW. I can't believe how little is known about it, and that he seems to be the only expert in Australia. I am hoping all goes well on Saturday, I'll be kind of relieved to start the process of treatment.

thanks again for responding.

susie

Hi Susie,

I'm so happy you were able to find professor V.. I know how relieving it must have been to find someone who finally understands.. I am currently living in Bondi Junction studying abroad for the semester and I too see him regularly.. Not to scare you, but I did have a bad reaction to botox when I got it done a month ago.. I developed coxxydynia and a feeling like my pelvis wasnt being supported well when I walked.. I still suffer from these symptoms but am hopeful that they will go away once the botox wears off.. I'm not really sure why this happened, Professor was pretty confused about this and thought it was because of how I was laying on the table during the procedure, but since it hasnt gone away it must have been from the injections..dont let this discourage you though, botox does help alot of people and since there isnt a solution that works for everyone, you'll never know unless you try it! Even though this happened, I dont really regret it because I wouldn't have known.. and it does seem to be helping a little bit with other areas..I'm only telling you because I was told there were minimal risks involved with botox and am still pretty upset that I was told that..

Feel free to private message me and ask anything you'd like !!!

xoxo