Health Organization for Pudendal Education

I have just had a consultation with Dr. Greenslade. He is a very nice man who tells it like it is. He has had experience working in the U.S and has been in contact with the Nantes team . He has prescribed me gabapentin and if this is not satisfactory he will do nerve blocks . He says that 70% of pudendal neuralgia patients achieve long term relief with nerve blocks.
Hopefully the medications will work, if not then Mr. Wong and Mr. Patel will perform decompression therapy in the uk (TG approach with removal of nerve supply to the OI muscle).
I was due start work in Japan before I was struck with pudendal sympts, I was going to cancel but now I'm going to try to go. I'm not letting PN control my life.

Hi Spikehades,

Did Dr Greenslade say why he cuts off the nerve supply to the OI muscle? I have not heard of this being part of the decompression surgery in the US but I know it is a muscle that some people have had injected with Botox.
Good luck with your new job in Japan! It will be a long plane ride, maybe stand as much as you can and take along a cushion to make the journey a bit less painful.

Jeanie

That is an amazing result - 70% get long term relief with nerve blocks?!

I definitely want to see Dr Greenslade, in fact I think I will call my GP tomorrow. The nerve might take another 6 months or even as long as another year to heal - if it ever does. I've been told today that my age definitely counts against me, regarding that.

Thankyou for posting about your experience spikehades, it is much appreciated. I do hope that you get some relief with the gabapentin soon! Could I just ask - does Dr Greenslade prescribe an antidepressant in combination with the gabapentin?

Dr greenslade is an anesthisiologist, he deals with pain management. Mr wong and Mr patel are surgeons, they have been trained in the latest TG approach in Nantes. as the alcocks canal is made up of the fascia of the OI, reducing nerve supply to the OI will cause it to atrophy a little and will reduce tension on the fascia, thus allowing the pudendal nerve more space to move.
My gp prescribed me amytriptiline already ( a tricyclic antidepressant) which helps me to sleep, I'm on 50mg a night. The gabapentin will hopefully be a good ancilliary.
I have seen both Mr wong and Dr greenslade and I applaud their no nonsense approaches. They are very succint and direct and lay the options on the table. I'm so glad I live in the UK as opposed to the U.S. The system here means that nobody must remortgaged their house for medical treatment , and at least the training and employment system means we have doctors who are working with public duty in mind as well as profit.
My heart goes out to Aaron Fillers patient who have spent their life savings on treatment from a man who is unashamedly profiteering.
When I first had symptoms I just felt sorry for myself, but now I realise that I should be thankful for what I have.

Peace and love

spike

Spikehades,
Good luck with your treatments and let us know how you're doing. 70 per cent long lasting cure for PN nerve blocks is a much higher success than I have ever seen reported on the forums (here and TIPNA.org ). I would love to see posts from any patients who have had success with blocks in the long term. Be sure to get a sitting cushion and try other pain or nerve meds (opiates, Lyrica, Cymbalta) if your current medications are not sufficient. It's important to cut into the pain as much as you can without negatively impacting your work life. Pain not only makes you feel like crap but also damages the nerve.

Thankyou spikehades. I too think that we are lucky here in the UK, not only does there seem to be very good general awareness of PN in the medical community but also the treatment that we need is free. I have an appointment to see my GP next week, when I shall ask for a referral to Dr Greenslade, by the way.

Thankyou for letting us know about the amitriptyline - so this is in line with the usual guidelines for neuropathic pain meds. I'm up to 1200mg now with the gabapentin and it is definitely not enough yet, I have had a bit of a flare which is very good for clarifying the situation, if nothing else. Will be taking it up to 1600mg by New Year, which should do the trick. I hope that it is soon effective for you, too.

I would echo what donstore says. Whatever helps, really! With regard to cushions, here in the UK the best I have found are a memory foam doughnut cushion from eBay, and a Widgey Pillow from Amazon. I am looking thoughtfully at the Airgo Active cushion on Amazon, it looks like exactly what's needed - but it is a bit pricy.

Love your attitude Spikehead.

I take Lyrica and Venlafaxine (SSRNI) for my pain and it works well. If it every stops working I shall go back to Dr Greenslade for a nerve block with no hesitation.

At least we now have options in the UK.

Cheers
Peaches