I have had a very successful trip to San Francisco for treatment with Stephanie Prendergast. I now finally understand what is going on in my body. After a lot of pelvic trauma, I have 'Non Relaxing Pelvic Floor Dysfunction'. A very basic summary is that my pelvic muscles go into spasm and when they contract and thicken they put pressure on nerves and I now have chronic pelvic and everywhere pain! I was diagnosed with pudendal neuralgia and unsuccessfully treated for over two years including having 7 nerve blocks in London that didn't work and only made my condition worse. I came back 80% improved which was a miracle for me I have been unable to maintain the improvement here in the UK. One of Stephanies recommendations is to try and get an experienced specialist to give me botox of the piriformis and possibly the puborectalis to support my rehabilitation with my physiotherapist in London. I am finding it difficult to find someone with experience that does botox , though I seem to remember reading that the Bristol team do it?
Stephanie also recommended Khaleed Ayazi to review my medication. I wonder if he does botox?
Thank goodness for the internet with this problem!
Any insight into the world of botox or the horrid world of pelvic spasms would be greatly appreciated. I need to give Baclofen another go too.
Have a good weekend,
Emma
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Emmax
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I don't know of anyone in the Uk who has had Botulinum toxin A for chronic pelvic pain. The NHS has not agreed its use for this indication. The team in Sydney have done a good randomized trial on it and it seems to help in some cases. I had this in Nantes several years ago in 2005. I was lying down all of the time beforehand and couldn't walk or sit. It certainly helped me at the time and enabled me to get mobile which I've been able to build on in the years since. I'm not sure they are still using it in Nantes though or not frequently anyway. The lack of accessibility of things that can potentially help is extremely frustrating for patients.
Frustrating as when I was with Stephanie Prendergast in San Francisco, had I had another week I would have gone to the colorectal surgeon she works with and they would have discussed my case together and decided the best location for the botox. She really felt it would support my rehabilitation along with medication adjustments. The only thing that has worked for me is going and getting physical therapy treatment with Stephanie and it looks like we shall have to find the money to get me back early next year for two weeks to try and push me through the next level of recovery and get the botox over there. I do realise it won't last but fingers crossed it will help break this rotten spasm cycle I am in.
Thank you so much for the reply, I appreciate your input. I did go to Nante and was told I needed decompression surgery but after exploring both the surgical route and physical therapy route, I feel in my case I would like to pursue the physical route further. It sounds like I have non relaxing pelvic floor dysfunction. I will email you a good article I read while at Stephanie's that may be helpful to some pelvic pain victims!
I was told off for fighting and not accepting my condition again last time I was at the specialist. It doesn't bare thinking about accepting it at the moment.
I am having this treatment under Mr Vic Khullar in UK - please see post below. NHS have agreed it's use and it is being used but Mr Khullar's team are the only ones in UK I believe.
sk:n clinic does botox injections, but they are meant for vulvodynia
Hi Emmax, I have pudendal neuralgia as well. I have also had botox in my pelvic floor. It was done in Sept 2012. I had the open surgery by Dr. Mark Conway in New Hampshire in May 2013. Stephanie has been a great resource to me and my physical therapist thru all this mess. The botox as a horrible experience for me and did not help. I am still fighting with my insurance about it and that is how I came across your post. I am still having problems urinating as a result of the Botox injections. I have heard of people having success and that was why I tried it, but sadly that didn't happen for me. If you want more details, I'd be glad to talk to you about it. Just reply back. There aren't very many of us that have this horrible problem, but I have a good support group of ladies in the US who have it. We'd love for you to be a part of our network.
I also have this condition (also known as short pelvic floor dysfunction). It is related to my hypermobility joint disorder (EDS) and I am being treated with Botox to my pelvic floor under the care of Mr Vic Khullar and his fellow Mr Alex Digesu at St Mary's at Paddington London UK. This treatment IS available on the NHS and approved in the UK. You are NOT alone. But this is rare and frequently misdiagnosed/misunderstood condition. I have suffered for many years but Botox is helping me. I hope it helps you too. Go get help
Hi Htemo, do have still receive botox treatment? how do you feel now? do you need to be injected every three months or so? did the interval between injection longer?
It is helpful to know that there is now someone who is able to offer this in the UK for pelvic floor spasm. Patients have been asking about it for some time now and I have mentioned it to clinicians at medical meetings/conferences. Is this part of a trial/study ?
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Levitor ani syndrome 
pudendal nerve
Has anyone had 4 years of pelvic pain with Hydrosalpinx (tubes blocked with fluid) and what are the options please? help
