Gerard is quite clearly a special PT, as are many of the other doctors and PTs that Simon has interviewed. If you happen to be near any of them - or any PT that is deeply familiar with the issues being discussed in the interview - count yourself incredibly fortunate. This moment is promising for CPPS, so let’s keep our fingers crossed that research will continue to push forward and hopefully arrive at a solution in the near future.
@ValeCyclist I’m happy to hear that you are cycling with no issues. I can’t wait to get back on the bike. I think I’m getting close, but not quite there yet. From the Dr. Nickel interview, he suggests sitting on a heated seat pad. I don’t know why I didn’t think of that prior, but it’s helping me a great deal with my sitting - especially in the car, so if you haven’t tried that I’d say it’s worth a shot.
Lots of great info on this thread. Thanks to those who have taken the time to talk about it.
For those who have had the pudendal nerve block, can I ask how successful it has been? I’ve been quoted a rather substantial fee to have one done and don’t particular want to spend that much if it’s only going to provide relief for a few weeks.
Just to give another bit of an update: I’m still cycling, now around 10 hours a week. Still have pain if I miss a dose of Gabapentin (although I can tell this is waning… I don’t feel it until it’s almost time for my next dose…). Otherwise, it’s almost never an issue. I’m racing crits again for the first time in two years and I’m actually in better form than I ever was. No major results but picked up a prime this past week and a couple top 10s. I never used to do that So, it’s possible to bounce back (although it is a much longer road than anyone ever expects) and to even train to ever higher levels of fitness!
Hi ,
I was wondering if somebody can help me or provide some advice please. I am in a utterly terrible state with I think Pudendal Neuralgia ( Cyclists syndrome) and can’t really sit , let alone get back on the bike. I am after any help I can get , ideally some Doctors or Physios or anyone that can help me. Happy to DM if easier. Thank you so much . Best
Dear All ( maybe @ValeCyclist@cosgroveb@SexyCoolguy@kiev ?),
Please , please help if you can , would be very grateful for any advice.
I am in an utterly terrible state with I think Pudendal Neuralgia ( Cyclists syndrome) and can’t really sit , let alone get back on the bike. I am after any help I can get , ideally some Doctors or Physios or anyone that can help me. Happy to DM if easier. Keen to know what got you fixed Thank you so much . Best
I don’t know if I suffer from it on the right buttock, after a period sitting on a soft seat I can get an almost unbearable stabbing pain. I don’t actually suffer on a bike although years ago (perhaps coinciding with the development) a car did accelerate into my back wheel
Please read through the thread. It has all the info there is really on my journey. I was off the bike for more than a year. A lot of people suggest PT and stretches. That helps but the medical literature shows that while PT is clearly helpful most will plateau and so you need a multidisciplinary approach! Throw everything but the kitchen sink at it.
None of my doctors or pelvic floor PTs had ever treated a man for pudendal neuralgia. One was so awesome that they read all the journals before I came for my first appointment (that was my anesthesiologist at the pain clinic). Staying determined and finding him after other specialists shrugged their shoulders, said they had no treatments for me, and rushed me out of their office took some resilience.
I was off the bike for about 14 months. Everyone says this takes way longer than you will expect to beat this. Believe them. I’ve been back on the bike for more than a year and I still have symptoms but it’s manageable. I’m still on gabapentin which is a lifesaver for me with no side effects that I can notice. Others don’t have as much luck with it but it very slowly improved things for me so stick with whatever treatments you’re prescribed for at least three months, including PT in my opinion, before concluding they’re useless because even in the best conditions nerves heal excruciatingly slowly. Also find a therapist. There’s an intimate two way connection between pain and your emotional state. They can enhance one another in a bad way. Therapy helps with this a lot.
You mentioned sitting. Get a wedge cushion. Order several on Amazon and try them out. Return all but one. My PT recommended this and I found one that made sitting tolerable for an hour at a time. I can now sit as much as I want without it.
Good luck. Take this thing extremely seriously and be prepared to put your bike away for a long time. It will be there when you’re back. My fitness came back 95% in a matter of months. Yours will too. Don’t sweat it. I swam for a while. I picked up ukulele. Find ways to stay active AND new hobbies to fill the time. Don’t drink out of boredom now because there’s a 10 hr/week hole in your life. No one ever says that but I think it’s a temptation even for folks who’ve never had that kind of problem.
Hello and thank you so much . All of this is really really appreciated.
Just so you know I have read every page of the thread and printed loads out for regular reading and stretch copying.
Have a couple of wedge cushions. Don’t seem to help. Can’t work out if the nerve is compressed in the butt or my perineum zone.
I am also on Gabapentin 1200mg and doing PT and everything other than injections.
I was wondering if you could share name of any PTs and Docs - not sure where you are based. I am in London UK.
Thanks
Hi @Klev - thanks for all the great posts and advice - are you able to share any of your specialist Docs or physios. I am in a terrible state and in need of some help please ? Is the Doc in UK / South East?
Thank you .
I completely agree with @cosgroveb - be prepared for things to take time. Don’t rush it and don’t let your head take you into a downward spiral. Stay calm, work towards finding a balanced state where you are not constantly trapped in a flare, and continue to remind yourself that things will settle down and get better. It is a long process to find what causes the flares and also to find what helps to alleviate them. I experimented with about 6 or 7 different wedge cushions before I found one that worked - so keep trying. Also try your seat heaters in the car if you have them, that might help get some blood flowing if needed. Meditation, stretching (very brief and at a very simple level - don’t push anything), walking lightly on flat surfaces, acupuncture, massage and just about anything along these lines helps some but not all - some things work for some and not others and vice versa, so experiment - but go lightly. Once the US reopened I was able to join a pool, and for me that has helped immensely.
Sorry, not been here for a while. I realise you’re in London but absolutely 100% contact Gerard at the link above, I was very lucky in that he was only an hour away from me but he knows his stuff and is exceptionally empathetic. Even a phone call may get you on track. @Anchorman
Thanks for all the help and advice @ValeCyclist and others .
This forum is a great resource.
I am booked into Gerald and also now on the Gabopentin ( week 2) which helps .
I am off the bike since April.
Above it was mentioned you had DM’d extra tips for recovery . If there was an easy cut and paste and I’d appreciate it .
Thanks again
Hey @ValeCyclist - thanks for prompt reply . Errrm err yes Gerard not Gerald
Re the help and advice saw this from your post in July 19:
“Yes, I have lots I can share with you. I had to take 3 months off last year and have only recently started racing again. To give you some hope it may only be pudendal nerve irritation. The details I’ll have to go into are quite personal so if there’s any way of chatting offline I’m happy to share my experiences”
…naturally understand if you don’t want to share with a random .
Advice already here is great but desperate to get better
Best wishes
How are you with your recovery? Are you back on the bike with PN and Psoas issues resolved? I have suffered with tight Psoas issues for 7 months now…PT and YouTube stretches for Psoas haven’t really worked and I have started seeing symptoms of PN…would you recommend the DCT for pelvic pain programme?
So, it’s possible to bounce back (although it is a much longer road than anyone ever expects) and to even train to ever higher levels of fitness!
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