New to forum

[HelenC]

Hi everyone, I have now joined this forum, however I been checking this site for a long time now. I just want to let everyone know that the information I have come across here has helped me so much. It was actually this site that confirmed for me that I had this condition. After many visits to my GP, she mentioned pudendual neuralgia and said there was not a lot I could do. So, I decided to google pudendal and came to this site. The information provided here and the discussions have been excellent. I have come so far because of this forum. It is appropriately named, as it did give me hope. I have improved so much that I now have my life back and enjoying my fabulous family again. I do still have flair ups, especially when I am stressed or have been sitting to long, but they are more manageable now. Anyway, I thought that letting you know some positive news would provide more hope for you all. Cheers

[helenlegs 11]

Hi Helenc,
Great positive post, thanks so much for these encouraging words and thanks for taking the time to post your PN story.
Very pleased to hear that PN was suggested by your Doctor, another one PN aware (tick ) although of course you are testament to the fact that there IS something that can be done. What on earth would we do without HOPE (both contexts) I do love that fact that your Dr. was PN aware but then saying there is nothing to be done is so untrue and counter productive. . . . Argh! don't get me started . . . . . . I'm guessing that conservative treatments did the trick for you?
Take care
Helen

[Violet M]

Hi HelenC,

Thanks for the feedback. I'm glad to hear you are improving and would be interested in hearing what therapies helped you. It's always great to hear that someone is getting their life back.

Take care,

Violet M

[HelenC]

Hi Helen and Violet,

It started for me just over 4 years ago with a little tingle feeling in the labia, which quickly progressed to distressing pain. I experienced changing symptoms - itching, prickling, stabbing and burning pain. Sometimes it was like ants were crawling under the skin.

After seeing a gyno, dermatologist etc, last year I was finally referred to a pain specialist for a nerve block but he had never done one for the pudendal nerve before and did not know of anyone who did. I had approx 10 days of pain relief. It was amazing, but then the pain came back. I think this was the most distressing time. I then started pt with a physio who specialised in the pelvis. This did not help me at all. It was about this time that I came across this site and found out about Prof Vancaillie.

By this stage I had already changed my lifestyle, no exercise, sitting only when necessary etc.

After 2 positive nerve blocks (2 weeks of complete pain relief) by Prof Vancaillie and a PNE diagnosis, I had the decompression surgery in Feb this year. I am not completely cured, but I have improved at least 80%.

Thank you to everyone who posts here, as this site gave me the directions to my life again.
Helen

[Violet M]

Helen, that's great to hear of your success from surgery. I've had about an 80% improvement since surgery too although it took several years to get to that point. I guess we are 2 lucky gals.

Hope you continue to improve.

Violet

[catherine a]

Hi Helen,

Wow, you are so fortunate to have recovered as quickly as you have done. You're amazing. I'm from Perth and had to travel to France to have my surgery with Prof. Vancaillie assisting. That was back in 2007.
It is just great to hear your positive news. I am so happy that you found us and that Prof. V and Dr. Loeffler helped you. If you ever mange to come to Perth we should meet. There are 3 of us here in Perth who have had surgery in Sydney with Prof. V and all 3 of us are doing really well. We did however, take a lot longer to recover. I'm still recovering and get better each year as time goes by.

Vanessa (Ness who posts on here too from time to time) and I run a support group here in Perth (King Edward Memorial Hospital) for women suffering from Pudendal nerve pain. We have given talks to the medical staff at the hospital too.
Please keep in touch with news of your recovery. Your positive outlook is a great encouragement to those who read your posts.

All the very best.

Catherine (WA)

[Skylar]

Hello Helen C,

Thank you so much for posting your successful results, I needed to hear something postive and your story really lifted my spirits.
Your story emphasized how important it is to keep on seeking treatment and not give up hope, you are lucky to have seen positive results so quickly and to have a respected PN surgeon to turn to. 80% improvement eh? That's wonderful......I hope you continue to improve and return to life's former pleasures.

To Catherine a: Sounds like you Aussie gals (Sheila's ?) have a great supportive network.....too bad it's a "little" too far to travel from Canada for your meetings. Way to go on giving lectures and educating other medical professionals. I'm glad to hear of others like yourself who had successful surgical outcomes.

Wishing you all the best,
Fall Girl

[HelenC]

Hi Catherine,

When researching PN I think I came across you and your story on utube. Your journey/story was the inspiration that lead me to Prof. Vancaillie in Sydney. Before I found Prof. V, I had read about the USA and French Dr's and wondered how it would be possible to travel so far for treatment.

It is great that you are continuing to improve. I feel very lucky and fortunate to have recovered so well and so quickly and I must say I did not expect this result.

Wow, what great work you ladies are doing for PN via this forum and the support group in Perth. I would love to meet you guys if I am ever in Perth. Keep up the great work.

Hi Fall Girl,

I am sorry that your Dr has given up and told you to get on with life. If only he new how painful and distressing this condition is. Glad to hear you are not giving up easily though and hopefully you will be able to find a Dr in Canada (or closer to home than Australia) to help you soon. This forum provides so much support and information, I hope it provides some you with some answers soon. Good luck and all the very best,

Helen C