Hello All

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Hello All

Post by janetm2 »

Gary,
Iagree with Karyn please look into this before giving up hope it really could be temporary or at least something easier to fix than PNE. Unfortunately although there are PN aware PTs in UK we cannot list them on the home page without their ok so you have to rely on these posts from your UK members. Hope they send in some references. Looks like another post from Rosemary gave you a link to your surgeon but would still be good to get Physiotherapist. You could private message Calluna, Rosemary and maybe even Roger who just joined recently and is getting help from a few different people (chiro and Osteo). I do understand your fear my hairdresser asked if I still need the cushion and I said I pkanned to use that forever because I do not want the entrapment to return. Also my dr asked if I needed anti depressant and I said if the PNE surgery did not help she would not have enough pills! Please do a bit of evaluation and see if you cannot get this to calm down. Good luck.
Janet
p s just saw your latest post and so sorry you do not have support from friends or family.
I thought Dr Greenslade and Dr Baranowski (he is listed in the UK section of the worldwide group) are available in UK? Sorry I am in America and have not kept up with UK info.
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Stephanie P
Posts: 74
Joined: Mon Oct 11, 2010 10:06 am

Re: Hello All

Post by Stephanie P »

Gary, I'm sorry that you're having this flare-up and understand your concern. Have you thought about emailing Professor Robert? I've found him to be helpful from a distance when I've needed advice. If the PN is indeed the culprit, the irritation may settle with pain medications and cessation of sitting and bending.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Rosemary
Posts: 309
Joined: Mon Dec 31, 2012 5:40 pm

Re: Hello All

Post by Rosemary »

Stephanie P wrote:Gary, Have you thought about emailing Professor Robert?
Hi Stephanie
Just wondered please do you have a current email address for the Professor that you could give Gary ?- Gary has asked on another thread -( in view current topics 'Contact Information for Nantes doctors' thread) how to contact Professor Robert. I have answered him giving a roundabout way via someone else which is all that i know.
Thank you
Rosemary
Stephanie P
Posts: 74
Joined: Mon Oct 11, 2010 10:06 am

Re: Hello All

Post by Stephanie P »

Hi Rosemary, I've just sent Gary a PM about this.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Rosemary
Posts: 309
Joined: Mon Dec 31, 2012 5:40 pm

Re: Hello All

Post by Rosemary »

Hi Stephanie
Thanks :)
Rosemary
Gary
Posts: 23
Joined: Tue Jan 07, 2014 4:22 pm

Re: Hello All

Post by Gary »

Prof Robert has retired.

Please is it possible that I am just experiencing a PF injury that may get better?

Remember I was cured for 10 years. I have never had a flare up before. I was stupid and exerted myself at xmas lifting something way too heavy.

It seems to have got a bit better/different but I am still very conscious of the area and I hate my mind being fixed on that area again.

Am I doomed?
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Hello All

Post by calluna »

Hi Gary - of course it is possible that this is temporary. It must be awful for you, having been free of symptoms for so long and now finding yourself dealing with this. Please try not to be downcast - although that's easy for me to say, I know, and not so easy for you at all.

I do think that you should consider going to your GP and getting some pain relief at the very least. There is no need for you to be in pain.

I know that not everyone has been as lucky as me, but my GP has been nothing but helpful and supportive right from the very beginning, and I had a referral as soon as I asked for it - no problems at all. Also, my consultant Dr Greenslade and his team trained with Prof Robert.

I hope, very much, that things start to improve for you soon.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Hello All

Post by janetm2 »

I think we are leaning towards flare up not doomed but maybe you could try some PT from a PN aware physio to help evaluate and maybe calm things down a bit.
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Violet M
Posts: 6820
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Hello All

Post by Violet M »

Gary , I wonder if there is anyone taking Dr. Robert's place. Some of the PNE docs train younger docs to take over for them.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Hello All

Post by calluna »

I wish I could suggest a PN-aware physio here in the UK but we don't know of any at all apart from William Taylor in Edinburgh, he is the only one.

There is also Maeve Whelan but she is in Eire.
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