Possible new sufferer looking for some help please

[janetm2]

Roger,
You sound ready to tackle this and put you focus and energy to hopefully overcome! I like the plan although keep an eye on the driving as that can also have an impact. I have been to a chiropractor that was able to help with SIJ. He was referred by my acupuncturist who was referred by a gynecologist that is PN aware. The gyne said of the 20 acupuncturists he had this was a PN aware and he was so right. He removed the last constant PN pain I had post surgery. In answer to your question about lack of help to men, I think the gynecologists seem to have an edge on knowing about PN although that seems very short sighted as it affects much more areas and many specialists should be more knowledgable. I personnally think we need a pudendalogist specialist. I started with anal rectal pain so the colon rectal surgeon should have known. He knows now! A different gynecologist did my surgery and although he will trat men with PN (rodeo riders, etc) he can not take insurance from them. Completely unfair and behind the times. I think progress is being made my sister in law is a PT and they just had a conference in her area including pelvic floor therapy. Hang in there and please keep us posted and let us know if you have any other questions we are here to help you.
Janet

[Violet M]

Hi Roger,

I am also in my 50's and love to stay fit but it's what got me in trouble. Pudendal neuralgia often occurs in association with other problems such as some of the musculoskeletal issues you are experiencing. SIIJD, chronic ligament strain, pelvic misalignment, etc. can all contribute to the development of PN and it can be pretty tricky to determine if there is an entrapment or just muscle tension with nerve irritation. I think your plan to check the SIJD and to see a pelvic floor PT sounds like a good start. Maybe Diane Wooten or one of the other PT's on the list will know a good PT close to you.

One argument for going ahead with gabapentin is that over time you can get into a cycle of pain with permanent changes to the brain and spinal cord as a result. So if you can keep your pain levels low that would be smart even if it means cutting back on your calorie intake a bit in order to keep the weight down.

There is no way to predict whether continuing your lifestyle of cycling, etc. will make you worse. Some people get worse and some plateau. From my own experience I can say that I wish I had slowed down sooner but each person is different and you have to decide whether you want to play it safe or risk worsening of symptoms. One thing I've learned about PNE over the years is that once you get into a downward spiral of pain it can be pretty difficult to get out so if you can avoid getting there in the first place, you probably want to.

MS can cause symptoms similar to PN so you definitely want to have it ruled out.

Good luck. Hope things work out for you.

Violet

[Roger]

Thanks Violet,

I'm still not sure about the Gabapentin tbh. I still need some persuading, but I think part of that problem is being ex army and being trained to adapt and overcome.
Also being retired at 51 I need to occupy myself to keep my mind clear (ex military Combat Medic PTSD sufferer) and exercise does that for me. So for me there is a major downside to stopping the exercise!

So after a couple of days on a low dose of Gabapentin I'm now getting a little nerve cross talk in other parts of my pelvic region.... So don't know if that's down to the meds or not?

Another question about a symptom I didn't previously connect. My body temperature feels hot and I frequently sweat, particularly at night. But I check my temperature and it is about 36c, so in the normal range. But it doesn't take much exercise for me to explode in sweat. Is there a connection to this condition?

I've binned the cycling as that was definitely a major trigger. Running on the treadmill doesn't seem to have the same trigger and I prefer high reps of light weights anyway or just use my own body weight. I might try a recumbent bike in the gym and see if that irritates or not. But I will be more mindful of what I'm doing and listen to any warning signs I get.

[janetm2]

Roger,
Thanks for serving in the military and sorry to hear you are a PTSD sufferer. I do not think PN is something you want to just grin and bear it and I know some people have felt drugs were important even when previously they did not take any. Not sure if you have tried mindful meditation but it has helped some and may be something to try. Also for PN warning signs can be very delayed sometimes pain is immediate but mostly it is delayed days or a week or more and can make it hard to know what the trigger wasJanet

[Roger]

Thanks Janet.

Well I tried the pills again today and increased the dose a bit. Took two lots of 2 x 100mg caps.........so I've had 400mg today and I have to confess reluctantly, I do feel a bit better for it tonight! So tomorrow I will try 2 three times a day (tds).
But I did have a couple of glasses of wine with dinner and a nice cognac after too...........so not sure which worked best Lol

[Roger]

I have used meditation before for the PTSD, so I can go back to that.

I know from reading on here that Yoga is not good or may not be good, but I like the yoga stretch and the meditation aspect of it. Helps my hip flexors, IT band and Piriformis to relax a little.

One thing I have to make a conscious effort not to do and that is crossing my legs in a chair. Really bad for the performis!

[janetm2]

Roger,
Sounds like you are working your way through everything. The drinks do help with pain but now that I am in a pain center taking tramadol I am off the sauce! The tramadol is very helpful and worth it but it is an adjustment. You may want to take it easy and make sure the combo is not too much. Also, take it slow on the drug increases especially if the side effects are a bit strong. I had to stay at one level a few days or week as I went up. You adjust as you go and the effects stabilize. I have to say this condition has been some journey and luckily we have each other here to help. I thought the meditation might be with the PTSD so glad to hear it can help. All the little things can add up to see you through. My friends, family and co-workers have been really supportive even without knowing about this ahead of time. I am still looking forward to retiring in 2016 or sooner if the approve an early-out.
Janet

[Roger]

Thinking back to the start of this and trying to work out where I went wrong.

I was cycling 3 days a week with a rest in between for the last 2 years. But gave it up to nurse a very ill dog in Jan..........so I think sitting for hours at a time on not particularly supportive soft furniture and possibly bad posture may have been the cause. Plus I think I'm in the unfortunate group who could get it due to past injuries, sports and work related spinal injuries like whiplash and also my horse fall.
So Jan, Feb, March and April sitting too much followed by strange symptoms and behaviours. Then back to cycling, running, gym etc in Sept, has now finally exposed the cause in Nov due to a different bike saddle putting pressure on the nerve.

Knowing what it potentially is has now helped to clear my mind. Where as before I was at a loss with the usual misdiagnosis and try this antibiotic protocol, which was doing my head in tbh.

[Roger]

An idea has sprung to mind and I'm wondering if anyone has tried it?

Has anyone tried using one of those Teeter Inversion tables?

[janetm2]

If you search for inversion in the search box in the top right of these pages there are some posts about inversion tables.

I am pretty sure my excessive sitting to offset my limited walking and standing was a contributing factor but who knew there would be this type of impact? It helps to understand how this came about although not sure it would have been easy to avoid, especiaaly in some cases. One motorcyclist thought the others should have warned him but we are in early stages of understanding causes and the full picture is complax not every cyclist gets it or person who falls or has a baby.