Health Organization for Pudendal Education

I saw my specialist a week ago, Dr Thierry Vancaillie and I intimated to him through my torrents of tears that I wasn't doing well and that I was suffering enormous pain which was an understatement. He suggested that I now consider bilateral nerve entrapment release and a neuro stimulator implant. I was expecting that he was going to offer Botox or acupuncture so I was knocked off my socks. Yes, I have perinium hypersensitivity off the scale, I haven't sat in months and its pretty well impossible even on a cushion. If I behave within a very strict regime, no sitting or bending and plenty of bed rest and remaining housebound except for short walks, then I can manage the household duties ok. Does anyone know of similar cases who recover without surgery? I have to be frank, I'm beginning to think this unlikely but I would like to give other therapies a go. I'm sure Dr Vancaillie must think its futile but I'd like to hear anyone's thoughts as my mind changes half a dozen times each day. I need to have psychological testing before surgery in a few weeks, it would help if I was less confused??!!

Hi Dizzy Blonde,

I'm a past patient of Prof. Vancaillie. I had Pudendal nerve Release surgery in 2007. Although recovery has been slow and painful, I'm now 90% better. He must have good reason to suggest you have surgery. I'll PM you with my phone number and you can call me if you like. I tried Botox and Nerve blocks for 2 years with Prof. Vancaillie before finally having surgery. He must believe you are a good candidate for surgery going by your history and symptoms. Everyone is different and he does not recommend surgery unless he thinks it absolutely necessary.

Some people do get better in time with conservative therapies. If your pain levels are off the scale as you mentioned, then perhaps he knows just how bad things are for you.

I don't like to suggest surgery to anyone as it's a very personal and difficult decision to make. Everyone reacts differently and recovers at their own pace. For me, it was clearly the 2 - 3 year mark where I could see significant recovery. Some people recover quicker and some recover slower. You're in the best place Australia has for treatment of this horrendous condition. I wish you all the best.

PS. As a result of what I've been through, I'm starting a Bachelor of Psychology next semester. Stay strong and keep positive. It's a lot to cope with but if you have a good family support network and plenty of help with your chores you'll do well.

I can have a chat with you if you like.

Catherine (WA)

Thanks so much Catherine for your informative post. I'm glad to hear from someone who has had personal experience with Prof. Vancaillie. I have forwarded a PM with my details so we can chat. Thank heavens there is a forum like this for support. Thanks to everyone who has responded to my previous posts.
Judy