New male 36, recently diagnosed..

[bikelover]

Hello, I'm 36, father of one boy and 2 beautiful twin girls, from Mexico, looking for support, information, etc..
I've been recently diagnosed with PN. My journey started 2 years ago, suddenly I started to have pain while sitting. I attributed it to bad posture, and sitting to much. After 4 months or so of light stretches, and correcting my posture while seating, it went away, and I was back in track. Then, around last march, I was driving my motorcycle and a car up front, distracted driver, almost fell into a huge crater in the pavement. He was able to avoid it at the last minute, but I was not able to react because I did not notice the situation until late. I did not fell off the bike, but did take a deep hit in my sit bones against my bike's seat. I remember feeling a little electric shock-needle kind of, in my butt. Although I exercise daily, most of my day I spent sitting working on the computer. It was not until the next week, while working, sitting obviously, that I started to feel this pain on my left buttock. From then on, I'm always in pain while sitting. The pain is much localized in my buttocks, mostly towards the center-left of my butt and in the area of the sit bones. Sometimes pain is referred to the center, around the anus muscles. Pain however, does not travel down my legs. I do get the golf ball sensation stacked up my butt when I have to sit for so long, for example, during days where I have to travel for work, either a flight, or on my car. Sitting on my car is the worst. I do not suffer of incontinence though, or at least not yet. I can still exercise, I do 6 km runs daily and this does not seem to affect the situation. My problem is, or my flare ups are triggered, I would say almost exclusively while sitting.
I've had the usual routine anti-inflammatory medications by many doctors, some shoot in my butt, normal PT (heat, ultrasound and TENS). I've had prolotherapy too. I've had 2 MRI's, one pelvic, the other lumbar with a tesla 3 unit and a supposed neurography. Both came back normal, no tumors, no abscesses, nothing abnormal. My main doctor, which did a successfully rotator cuff and biceps tenodesis surgery on me, gave up on me and sent me to a neurologist.
The neurologist sent me for a very uncomfortable rectal electromyography and latency test of the pudendal nerve, and apparently there’s damage on the nerve and abnormal muscle activity. I was given standard treatment with an antiepileptic and antidepressant drugs for 3 months. These are Lyrica and Prozac. I started this treatment last Friday, and have not noticed much difference on the pain while seating. I do feel the effects of the drugs, and sure don’t like it at all. They make me slow, not sharp as I’m usually am. The neurologist told me that If I didn’t felt a, say 40% improvement in the course of 2 weeks, that I should go ahead and try a nerve block.
I must say that I don’t like that all the doctors I’ve seen have treated me like a desperate fool. Worst, I am indeed somewhat desperate to be able to sit again, although not crazy. It worries me, that I have not found someone willing to try something else rather than the drug protocol.
I’ve tried to reduce my sitting time a lot. I now work mostly standing, all day long. Put a big tool box over my desk to lay my laptop. I try to occasionally sit only to relax my legs a little bit, because I usually end up felling my legs pretty tired by standing all day long…
I just bought the book A Headache in the Pelvis and been reading thoroughly. Although it repeats a lot of information and has a lot of unnecessary mumbo jumbo, I like the concept. I don’t really know how much I’ll be able to keep up with these drugs. Am I supposed to feel a significant difference immediately, because so far they’ve only managed to make me clumsy…?
Somehow I get the feeling that the damage or neuropathy of my nerves is more due to muscle injury / spasm / atrophy and inflammation, hence the nerve being compressed, than an entrapment per se. While having a bath, If stick a finger up my rectum and press upon the left side wall and up I can feel tightness and soreness, If I press more deeply, the pain is familiar, just like an On/Off switch. I’m guessing this could probably be my anal sphincter and levator ani muscles? I remember when I was at the electromyography, I was not able to completely relax my sphincter, even though I tried to remain calm, even with the nature of the test. It hurted like hell when they were inserting the needle, I could feel the spasms.
Anyway, for now I will try to keep up with the drugs, I’m going to follow the Headache book and its advice, going to keep doing the following as well: http://www.bjui.org/ContentFullItem.asp ... hort-study
I have mixed feelings about the block. My pain is not continuous, only while sitting. From what I’ve read, blocks bring only temporary relief. Has anybody been cured solely from the blocks? I’m somewhat tired of people sticking needles up my butt… Surgery, I would only consider it If I get pretty desperate. Somehow, I get the feeling that there is no easy fix for this one. I’m willing to try alternatives even if they have some long term promise of improvement. I’ve read here about some success with shockwave therapy. I’ve had that some years ago to remove a calcific tendonitis on my left shoulder with great success. That calcific tendonitis was rendering my shoulder useless. I wonder if it might have the same effect, of providing strength and tone to the muscles of the butt and liberate the nerve from whatever might be entrapping it…

[bikelover]

BTW, any recommendations for cushions? I've tried kabooti cushion, with mixed results. I can stand sitting on it, but not for very long.. Although a little less, my butt still gets sore while seating in a toilet. I don't know if the whole hole in the middle thing is really helping me. I want to try the Cushion your assets twin cheeks, but it is somewhat expensive.
Any toughts are appreciated.

[Violet M]

Hello Bikelover,

It must be difficult to be a good dad with all of this going on. I'm sorry about your accident.

I couldn't tell for sure -- have you seen a physical therapist who specializes in PN?

Sounds like you have read the forum enough to realize that nerve blocks make some people worse. It's rare but it can happen. Your plan to try conservative treatments first make a lot of sense, especially since your pain is not constant. Someone recently posted that they like the Wondergel cushion. I haven't tried it but it looks pretty cool and is not terribly expensive.

Good luck. I hope you find some treatments that work for you.

Violet

[bikelover]

Thanks Violet, yes it is. This last Friday my kids wanted to go to the movie theater, my wife took them, I missed it because I'm trying to avoid sitting for long periods of time. I cannot sit more than 10 minutes without having pain.
I'm trying to find a PT that specializes in PN. Its difficult here, the condition is somewhat unknown, but we'll see.
I might just go and see a chiropractor that I know, that does ART too.
Thanks for your recommendation and the warm welcome

[Violet M]

Maybe the chiro can be a bit gentle when starting out to see if the treatment causes a pain flare-up. Hope the treatment works for you.

Lyrica and Prozac both take some time before they reach full effectiveness. So if you can handle the side effects maybe it is worth waiting a bit longer.

Take care,

Violet