Dear Cosgroveb
How much Gabapentin do you need for the 0/10?
I am on 900mg and think it only helps a little bit
Thanks again for help
I’m on 1200mg. I take a double dose at night which helps with the longer interval between that and the morning dose. How long have you been on it? I think when the pain was still bad the double dose helped a lot because if I went too long between doses my pain “smoldered” and took awhile to calm down. These days I can skip a dose and won’t even notice until my next dose. I may step down to 900mg soon. I’ve been on it since Nov 2019 and wasn’t riding bikes again until July 2020.
I tend to agree with this…Reading Pudendal hope sometimes makes me feel like there is no way out…which is absolutely not the state you ever want to be in with pelvic pain…
I would recommend latest research on chronic pain by Lorimer and Moseley (Explain Pain) and Alan Gordon (the way out). These provide a comprehensive insight into chronic pain and methods that are known to work in coping…
Hmm. It’s a different perspective. If you take a load of painkiller drugs and the pain is reduced that doesn’t say “cure” to me. If you’ve got to keep taking these drugs every day then that would worry the hell out of me.
I guess in the US there is a greater affinity towards medication but I really don’t like to have to use chemical help.
I think also, we have to be mindful that everyone’s experience is different. Also, I think everyone on this forum has a range of injury from anything like mild nerve irritation to full-on entrapment or lasting nerve damage.
I’ve never taken anything for my situation, but I have to admit, I don’t know if I’d say I’ve had a 0/10 pain day, I’m always a little aware of it, albeit subconsciously.
Granted I’m in my 40s now, so pretty much any part of me is at least a “2” at any given time… 
And that’s a valid perspective! Of course, I never said I was cured. I’m a 0/10 right now. Tomorrow I might be a 1/10. Especially if I skip some doses or if I slide too forward on my Infinity Seat for awhile, ha. But every flare-up is temporary so no worries.
I shared your concerns about medication, initially. The pharmaceuticals industry does itself no favors by being so god damned evil, that much is for sure. Often meds are unnecessarily prescribed and the opioid crisis is basically a crime against humanity.
However, medication is often appropriate, life saving or simply helps folks lead a much higher quality of life. It strikes me as ill-considered to write off medical treatment in such a dogmatic way as you have. You said Doctors can’t help or haven’t helped you but you won’t even accept their treatments so I do feel it necessary to provide my perspective in case others can be persuaded to take their concerns to their doctor (if they can find a good one).
I do expect to be off the medication some day. I’m forgetting to take it in the afternoon almost every day. Pretty amazing. I’m sure that my pelvis healed up years ago leaving me only with central pain. My centralized pain is unwinding. Neuroplasticity can do the work of healing while the pain is blocked. Meanwhile, as I said I don’t notice any side effects and I’m doing everything I could ever want with bikes. Riding to the top of Haleakala. Podiuming in crits. Even riding centuries on the weekend if I want. I’m living my life and not at all worrying about “chemical help.” Help is help. You can think of it as a crutch but, hey, crutches help people get around so they’re A-OK in my book.
These are great resources! Everyone would do themselves a favor by educating themselves on the most up-to-date knowledge of how pain fundamentally works because it’s very, very surprising and you can often be stuck chasing ghosts otherwise…
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Here’s another resource folks might find useful (or annoying if they hate the format LOL): https://www.amazon.com/Pain-Really-Strange-Steve-Haines/dp/1848192649
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Does anyone have any recommendations for setting up a bike if I want to get back to doing short rides, e.g. commuting to work (about 25 mins each way) or going to the shop?
I’ve had PN for nearly 3 months and been off the bike completely for about 3 weeks. This, combined with nerve pain medication, does seem to be making a difference.
Road cycling is my main hobby and it’s frustrating to not be able to cycle - but what’s more annoying is having to drive/walk all the time when I used to go everywhere on a bike.
Based on what I’ve read in this thread it seems like a noseless saddle (recommendations welcome) would help, and also a more upright riding position? Also lower tyre pressures to reduce the shocks from the road surface.
Just to give you all an update, I still have constant burning, tingling and pulling sensation when I sit in my in my bits , glutes and sit bones When I’m lying down in bed my left glue goes numb and I get a tingling and numb sensation in my bits and I’m my groin, but luckily I can still sleep. I tried a stationary bike for 3 weeks and it just made things 100 times worse! I know I’m an idiot! I’m now swimming and walking lots and it does help a little. I’m going to try some of the stretches on here and see if they make a difference. I have noticed as well when I’m walking I can feel something in my butt and I need to keep adjusting my trousers. Does anyone else get that as well? I know this is going to be long painful road, but they do always say that things get worse before they get better. Stay strong all of you, yes it’s painful, but try and cut out things that can give you anxiety especially like caffeine. I was biking , running and drinking 6-8 coffees a day working and that’s why I panicked because I was worried my fitness was going down the drain and made a wrong decision in regards to what I can try next to stay fit and not get depressed. I’m awful and at swimming but I need to keep trying. We are not alone with this issue and once you start to understand your pain things do get a little easier. I will keep you posted on my symptoms in next couple of months.
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I use to suffer from a numb pudendal region but switching to a cutout SMP saddle 100% instantly cured it.
Sorta like rolling into a forum of people suffering from chronic migraines and saying:
“I had a headache once, Tylenol totally fixed it”
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After experiencing minor symptoms for the better part of a month I decided to visit a urologist who was puzzled about my symptoms. My symptoms got a bit worse on 7/15 and thankfully I stumbled upon this post afterwards l. It was instrumental in helping me find information to bring to my pcp in order to help diagnose. This visit happened on Tuesday 7/19 and I was referred to an international pain management anesthesiologist, who I met with on Wednesday 7/20. He has scheduled me for a nerve block on August 1st and I start pelvic floor pt on 7/25. Both the anesthesiologist and my pt seem very optimistic they can get me feeling better. I have not ridden in 6 days and I don’t have a desire to return to the bike anytime soon. I plan to allow my body to rest and do the necessary therapy to allow my body to heal itself, hopefully sooner rather than later!
Nerve block made me worse
Is the nerve block a temporary relief thing like a cortisol shot? I never went that route, but I could see it if there was no other way to get relief.
My only curiosity is that if you get the nerve block, how do you know if the pt is doing anything?
Nerve block made me worse
Duloxtene helps a bit but makes me sleepy
I did the nerve block. It is not intended as a cure but it provided some relief while I started gabapentin. Gabapentin took a couple weeks as well before I saw benefit which makes sense if you understand centralized pain. Nerve blocks aren’t totally risk free as the anesthesiologist might nick something. He bruised my pelvis on one side with the needle I think so my butt hurt for a week. It was nothing next to the nerve pain. The nerve block has diagnostic value as well. Ask the doctor to help you weigh the risks. Mine had never even blocked the pudendal nerve before but was pretty confident and explained everything about the anatomy and the procedure using a model spine and showed me the training video he would use to prepare. His was X-Ray guided but some use ultrasound. Good luck but don’t expect a cure IMHO.
Also worth noting that the nerve block was part of an overall “throw everything at it” plan that the anesthesiologist said is the current best practice for this difficult and rare syndrome. For me that meant I was also doing:
- PT also with an at home program
- Gabapentin, a low dose of cymbalta to fight the central pain (gabapentin was most effective here but if you have side effects there’s a large range of similar drugs worth trying according to my doc)
- tizanidine (a muscle relaxant targeting the muscle spasm hypothesis in the same way PT does… made me sleepy so I didn’t stay on it for long. I also didn’t find it effective)
- Therapy (our emotional state amps up or dampens pain, of course)
- CBD as a Hail Mary… took off the edge but was expensive
So yeah don’t expect any one thing to be a silver bullet. I’m a big believer of this multidisciplinary approach. My anesthesiologist prescribed all of this and coordinated it but most docs don’t go that far and you may need to advocate for yourself.
Be rational, stay positive, and try every damn thing! Good luck.
Mine is much better these days. I think i eventually worked out that it might have been 2 different issues compounding each other.
Firstly: massive work stress left me in a tight ball of internal tension which locked up my pelvic floor into a permanently tensed state.
Secondly: having a crap saddle with no cut out bruised my perineum.
I have mostly solved the first problem by getting a different job, doing lots of stretching and learning to recognise when i’m internally tensing up and to release it.
I have fixed the second problem with Selle SMP saddles. I was on holiday last week and used their bikes with non-cutout saddles and i’d have a bruised-feeling perineum for a day after each ride. Coming home again i was out for 2 hour rides on my cutout saddles and felt fine.
I didn’t go down the medical route as i didn’t fancy having to effectively get addicted to quite strong psychoactive medicines to mask pain so i can’t comment on what drugs work or not. Pelvic PT wasn’t able to help me much either.
This has been 18 months of hard going but it’s now manageable…
Try lots of thing, don’t expect a quick cure, good luck!