Health Organization for Pudendal Education

Hi,

I've had the symptoms of PN/PNE and been examined by a PN specialist doctor. I was not at this point having any pain from the coccyx. When he examined me, he said that my coccyx was tender too and told me to use a coccyx cut out cushion.

I have never had an injury to the coccyx, but spent years sitting on hard chairs for hours each day (silly me), which seems a likely cause of my problems.

I am trying to find out what the relationship between these two things is, if any.

I happened to be looking at the website of the Sayer clinic in London. According to the site:

"Coccyx hypomobility causes pelvic floor tension pain and muscular spasm and "Pudendal Nerve Entrapment (PNE)" or pelvic neuralgia, with nerves become compressed or stretched near the coccyx and ischium or "sitting bones" area of the pelvis and referred pain into the perinium, abdomen and buttocks."

which is interesting. I have also heard that "coccyx manipulation" is a bad idea if you have PN/PNE

Does anyone have PN/PNE and coccyx problems and can shed more light on this please?

Many Thanks

I had a few similarities but not sure I can explain the reasons. I started with pelvic muscle spasms Levitor Ani syndrone. Then I sat on a hard chair in pain and did not get up right away and then pain stayed until about a month ago (in between I had more muscle spasms that I had treaments as original but not work so botox, still pain then had some coccyx pain and cortisone shots still pain PT, PNE diagnosed and decompression surgery May 2011, more PT and acupuncture just removed the last major pain). Sorry I do not have a specific correlation or reeason why but thought the similarities were interesting. I hope someone knows.
Janet

Hi Clare,
Has anyone you've seen ever mentioned SIJD? If your sacrum is rotated, it could possibly displace or put excess stress on the coccyx and surrounding tissues.
From what I understand, the sympathetic nervous system is locted behind the sacrum/coccyx. Please feel free to correct me, if I'm wrong!
I have intense sacral and coccyx pain. Also severe ischial tuberosity pain. I found your quote from the Sayer Clinic very interesting. Is there anyway you can post the link in this thread? I've been trying to figure out WHY I have this horrible ischial tuberosity pain. For me, not only does it feel like a neurological disorder, but also connective tissue.

ClareW wrote: I have also heard that "coccyx manipulation" is a bad idea if you have PN/PNE

Have you heard this from other doctors or patients? I know lots of folks who've had this done (prior to surgery), myself included. Some didn't mind the procedure. I thought it was brutal. I don't know of anyone (myself included) who found it helpful.
Kind regards,
Karyn

Hi everyone,

Thanks for your replies - I will read about Levitor Ani Syndrome

No-one has mentioned SIJD to me, it's something that I will look into. I think I need a plastic pelvis for Christmas as my grasp of anatomy is sketchy to say the least Still, we're all learning and we have to, as we have to be our own doctors to an extent. I will look into it.

The link for the site is http://www.sayerclinics.com/conditions- ... ccyx-pain/ . There's quite a lot to wade through on that page, but the quote I used is from the section called "Update 2009-11-29".

I've also found another juicy bit in there

"Over the last two years I have seen a higher proportion of overweight, very sedentary, typically ‘IT’/computer patients in their 30’s to 60’s with extended (bent backwards) and calcifying or osteoarthrotic sacro-coccygeal joints. There has typically been no significant history of traumatic injury."

My doctor told me not to have "coccyx manipulation" as people with PN/PNE that have had it done have been worse after.

I'm currently waiting for a date for MRI scan on the pelvis (don't think they will do the coccyx??), so perhaps that will reveal something. My PN/PNE symptoms started last August and I have only just started having pain in my ischial tuberosities (I wasn't really aware of their existence until a few weeks ago!).

Clare,
That juicy bit also is similar, I had no injury but definitely sedentary IT 52 years old and lowest part of overweight BMI scale but not if I had the sacral (SIJD did not appear until after surgery) coccyx problems.
Hope you can find a diagnosis and treatment.
Janet

Thanks for the link, Clare. I wish I knew someone who benefitted from his statement about it being correctable:

Misalignment or fixation of the sacroiliac joints, pubic symphysis, spinal facet joints or sacrococcygeal joints were often causative or a perpetuating factor and were successfully treatable using manipulation, myofascial connective tissue techniques, acupuncture and exercises to reduce nerve compression, muscle spasm and inflammation.

ClareW wrote:I have only just started having pain in my ischial tuberosities (I wasn't really aware of their existence until a few weeks ago!).

Ha! Me, too! Sit bone pain wasn't part of my initial PN symptoms. It wasn't until I had a nerve block a few years ago (before the surgery) that I became aware of their existence.
Happened exactly two hours after the blocks. I had numb private parts, so I thought I'd try some sitting. I jumped up from the couch and immediately looked down at the cushions to see what I was sitting on. Of course, there was nothing there, so I gave it another go, thinking it was just "one of those things". Nope. I had no idea what was going on, and as you mentioned, I was never even aware of sit bones, either. I've now been painfully aware of them for about three years.

ClareW wrote: My doctor told me not to have "coccyx manipulation" as people with PN/PNE that have had it done have been worse after.

Did he happen to explain why? I wonder if his thoughts are consistent with the bit you posted from the article? But wait - the author of the article is saying it's treatable using manual manipulations.

What type of pelvic MRI are you getting?

Hi Clare and Karen,
I also never knew where my ischial tuberosities were. Not until after my 2nd pudendal nerve block, about 3 weeks later I started. That was 16 mos ago, and I still get stinging, burning, or throbbing in the area. My vaginal pain pretty much disappeared after that 2nd block, but here is the trade off.

I asked Dr. Hibner about the issue when I saw him last year. He said yes, some people just react to the blocks that way, that it may something in the block itself. I don't really understand why whatever it is would not have worn off by now? Then again maybe I would have had the ischial area pain eventually.

I would like to take a little survey on how many people wind up with this ischial tuberosity pain after having a block. At least I can sit for the most part, but too much and I pay. I've yet to find anything that specifically helps with that pain, except ice which is short lived. (Or a pain killer)

Has anyone tried a foam roller in that area? That's what my pelvic floor OT wants me to use, and work my hamstrings too.
I don't do it, too painful. I may do some other kind of massage, but a hard foam roller sets off more leg burning for me.

My best to all of you,
Debbie

Is interesting because I've had coccyx pain for years before I ever heard of PN yet I never associated it with my pelvic pain I just thought it was another thing. In Sep '12 I started with a new pt and she told me its all connected. Now that I know all abt PN I know that's a common symptom

Shana

I have coccyx pain never had it before I had pn. I use tiger balm for it I find this quite helpful.

Molly

I too have both. When Dr Castellanos does my TG surgery on July 29 here in Phoenix, he's leaving
The ligament that attaches to the "tailbone" UNdone. NOT stitching that one back since it serves no
Purpose in us, the human being. Animals of course need it to wag their tail

Openup
Phoenix, Az