Health Organization for Pudendal Education

Hi,

I have recently started to have serious tailbone pain.
I believe I know the source.
In order to sit without pain, I shift my pelvis forward so that most of my weight is on the upper part of my butt and lower part of my back. When at my desk I would put my feet up on the desk (have not been able to do that for the last year though). I have been doing it ever since I had PNE which is about 7-8 years. It works fairly well, but causes other problems, like all kinds of back pains. But it worked for me.

I have gotten more and more pain relief through other means also. Like swimminig noodles formed into a 'seat', and I have the cushion from cushionyourassets, and ice packs. I also have a very expensive workstation from ergoquest used for work. I tried the neuro-stim but there was spinal cord damage to my spine during the surgery, so it was removed. I was left with even more pain, but in my legs. It feels like they are in spasm. I now have a pain pump, but it really does more for the muscle spasms than it does for the sitting pain. Part of the reason for that is because I ask my pain doc to keep it as low as possible. I need a clear head in order to be able to work. She tells me I am at the lowest level of all her patients. If it goes up it starts to give me brain fog. I have to depend on my cushion and ice for sitting.

I have managed to work through all of this crazy pain and it was due to all of these changes I mentioned. But I think it all is about to end. I started feeling pain in the lower part of my spine, what I call the tailbone. It was more general than that, I mean the pain would spread throughout the entire region if I did not do something, but the center of the pain was definitely the very bottom part of my spine. I now have to sit on BodyIce (lodged in the center of my cushionyourassets thingie) at all times to avoid irritating my tailbone. My pain doc gave me a steroid injection into my spine in this region. The reaction to the steroid was a bit unpleasant, but it completely relieved my pain within a couple of days. It had an effect on my 'sitting pain' also (much more than the steroid injections near my pudendal nerve). I thought I was 'back in business'. But it only lasted for a couple of weeks.

This pain is much worse than any of the other pains I have. There simply is no way I can continue to work with this if I cannot find a remedy. The pain is too much and the pain pump does nothing for this.

Has anyone else come across this?

I have given up so much that was dear to me because of this PNE. I have a very bad feeling that this new pain is going to force me into giving up more.

I am thinking I will have to go on disability. I am 61, and early retirement was not what I had in mind, but I should be thankful. I am in a better situation than many on here. My heart goes out to them, particularly the younger folks.

Anyone ever experience this, or have any knowledge of this pain?

How about SS disability? I hear that with the downturn it has gotten much harder to qualify. PNE is not cause enough? I also have sleep apnea and bradycardia. Do more problems give you a better chance.

Thanks very much!
Skip Egley

Hi Skip,

Just wondering where into your spine that injection that helped was located. If it was the ganglion impar, they could do a more permanent procedure using phenol that would be longer lasting. Some people with tailbone pain have had good results from that procedure.

Best,

Violet

Hi Violet,

Very good to hear from you!

I'm not sure if it was the ganglion impar. I don't know that much about the spine.
I know from the band-aid on my back after the procedure that it was low on the spinal cord.
Does it matter exactly where it is injected if it is intrathecal?

Anyone on the forums try this?
What would phenol do to the brain?

Thanks very much for your reply Violet.
I will search the forums for phenol to see if I can understand it better.

Sincerely,
Skip

Skip there was a gal on the old forum who had a successful ganglion impar block and then had a phenol injection into the ganglion impar that lasted even longer.

Phenol is neurodestructive so it could only be used on certain nerves. Phenol would not be used intrathecally. It can be used on the ganglion impar though. The ganglion impar are in front of the coccyx so an injection there would be lower than the spinal cord itself. It would be down near the coccyx. You can see a ganlion impar block here. http://vimeo.com/52964207

It sounds like the injection you had that helped temporarly was higher up. Do you know what level it was at? There is a slight risk of arachnoiditis with steroid injections into the intrathecal space so you might want to get more information on exactly what the procedure is that they are performing.

Best,

Violet

Hi Violet,

Thank you for the suggestion.
Looked up arachnoiditis - scary stuff. I will find out more about the procedure performed!
At first I thought it had something to do with spiders (remember arachnophobia?) or something to do with Spider Man.

I feel pretty sure that this problem with my tail bone is related to my 'sitting on my back'.
I have been doing it since PNE started. I could work with my feet up on the desk and no sitting pain.
I am pretty much sitting on my lower back.

My butt started burning many months ago, but I did not know what was causing it.
As it continued to get worse, it started to become clear the pain was originating from my tail bone.
It made sense to me, that if I was putting pressure on the bottom part of my spine, it might begin to suffer some damage after so many years of it. Probably nerve damage.
My pain doc doesn't think the magnetic fields of MRIs are strong to resolve nerves.
I thought I read somewhere on here that they now have MRIs capable of doing this.

If my theory is correct, not sitting on my lower back should help.
So, I have been doing that with the help of very cold ice packs.
The cold deadens the pudendal nerve, and I can sit.
But this is a solution that will only last so long.

I'm running out of options.
I am fairly confident I will be on disability soon. I cannot work with all this pain.
Then I will have the time to educate myself, find an option I think holds out the best option for me, and hopefully find relief from all this pain.
I am very fortunate to have a supporting wife with health insurance for me.

From the posts on the forum, it doesn't give me a lot of hope.
But one has to try, no matter how poor things may look.
You got better!
Perhaps I will too!

Thanks for sharing your knowledge.

Skip

Hi Skip,

Sorry, you are having to quit work. Sounds like this is really affecting you severely.

I hope you will be able to figure this out.

Take care,

Violet

Hello,

I also have tailbone and severe sit bone pain. I've had it for 2 years. The pain in my perineum area is nothing compared to the pain in my sit bone area. On top of that, I have trigger point pain from the Pudendal nerve. Does anyone have any trigger point pain (sacrum, hips, lower back) areas. I was seeing a dr. who gave me unguided nerve block injections, bladder installations and meds. The meds and bladder installations have worked but I still have unrelenting sit bone pain. I'm going to find a doctor to give me the Ganglion impar injection because I have a good feeling that this will work or at least help me from what I've read. About two years ago I had an epidural near my coccyx area. Four days later I felt relief for a few days, it was AWESOME and I sat at the computer all day to upload my Facebook pictures...and then it came back to bite me in the but again and has been there ever since. I've also used all types of cushions including home made ones but I thing I'm going to order the Cushion Your Assets cushion. I've spent so much money on cushions...a few if them have been chewed to pieces by my puppy.

I had pain in the sit bones and perineum and also trigger points all through the pelvic area. I don't know...since sit bones and perineum are in the same general region sometimes it can be hard to distinguish which is worse. Since my PN surgery I don't really get sit bone pain anymore though.

Violet