Health Organization for Pudendal Education

Hi,

I know this issue has come up quite a few times, however I cannot find anything that seems similar to mine when searching.

I had a look at the official pelvic CT results (it was actually a detailed CT of the coccyx area). One of the top spine doctors/surgeons, along with other doctors who read the report, all said everything is fine. Being that I am constantly hearing about so many connections between PN & SIJ issues, something maybe does not sound so fine here.....

Report as follows:


"There are some mild degenerative changes in the SIJs on both sides... including gentle sclerosus around the edges of the joints & osteophytes (bone spurs) in the front aspects on both sides. There are degenerative changes and highlighting of the third coccyx joint.  There is mild sclerosus of the edge plates in the third coccyx joint area with widdening of the joint edges (this might be because of the degenerative changes mentioned above.)"


Any insight or resources? Much appreciated!

PS. None of the doctors who reviewed this have ever heard of PN.

I agree with you that it does not seem like everything's "okay". Bone spurs occur when there is a muscular force on the bone pulling the bone away from its usual location. Karyn has bone spurs on her heels which she thinks may be causing her heel pain.

My PT has recently told me that my tight left pelvic floor muscles (specifically the obturator internus) have pulled my coccyx towards the left. That may be what's happening to you. Can you find out in which direction the spurs are pointed and whether that correlates with the side of your pelvis where you feel the pain? If so, you should investigate whether the pelvic floor muscles on that side are tight. Have you seen a pelvic PT?

Len,

It does sound like maybe there is some mild arthritis in your SIJ's and possibly coccyx. Do you suffer from arthritis in other joints? Would you mind sharing your symptoms. Do you have low back or buttock pain, groin pain, leg pain (these are some of the symptoms of SIJD). Have you been evaluated by a manual PT for SIJD or pelvic joint dysfunctions? I have SIJD although my scans have never showed any joint changes such as this. I think this is probably something you should look into more. Can you ask the doctor specifically what you read on the report means?

Hi Len,
I agree with Lernica and Faith - your CT impression does not indicate "everything is fine".

Lernica wrote:Bone spurs occur when there is a muscular force on the bone pulling the bone away from its usual location

This is correct. Osteoarthritis can occur when there are microscopic tears at the cellular level of joints and ligaments and don't heal properly. Bone spurs are usually a precursor to this progessive, degenerative process.

Len wrote:"There are some mild degenerative changes in the SIJs on both sides... including gentle sclerosus around the edges of the joints & osteophytes (bone spurs) in the front aspects on both sides. There are degenerative changes and highlighting of the third coccyx joint. There is mild sclerosus of the edge plates in the third coccyx joint area with widdening of the joint edges

In my opinion, this is a big, fat, red flag. Even without the acknowledgement or diagnosis of PN. Have you been offered any type of treatment???

Lernica wrote:Karyn has bone spurs on her heels which she thinks may be causing her heel pain.

No, no bone spurs (that I know of). I did have an MRI of both feet and ankles. The only things it picked up were achilles tendonitis, edema in the fat posterior to the FHL
(Flexor Hallucis Longus) and "venous structures" medially in the tarsal tunnel. However, after all of this time having gone untreated, and further exasperated by standing on my feet all day, I wouldn't be surprised if bone spurs have developed. Wouldn't be surprised if my achilles tendons snapped, either.
Len, I'm not trying to alarm you but I wouldn't be so quick to dismiss the findings from your CT as your doctors have. Because of the limited blood supply to joints and ligaments, they don't heal like muscles, nor can they be stretched or exercised back into normal function.

remove! for some reason the "delete post" x button is not on the top right of this post....

Thank you so much for your replies - sorry it took a few days for me to answer, haven't been able to get in a comfy position on the laptop. I can read this site OK on my android phone (Galaxy s2), but it's very hard to post.

First of all, if it were not for this site I would not even know about SIJ - so thank you all so much.

(I still don't totally understand, if someone wants to explain in simple English, that would be awesome! Please don't laugh if my questions are silly.... thanks.)

First must add as warning to all! I had a sacrum and spine MRI done. I must have showed it to at least 20 doctors (plus those that looked at it when I went to hospital begging for pain relief). EVERY single doctor said everything looks perfect.

One day I was having a look at tailbonedr.com (a great site for coccyx issues). There is a section called "Did your MRI included the Tailbone (Coccyx)?"I thought to have a look at my MRI, because I didn't remember seeing such a picture.... and I could not find my tailbone anywhere.

My husband & I then went to one of the top spine specialists/surgeons - without us saying a word) - he has a look at the MRI (and CTs) and immediately said to us , "You know you coccyx is not in any of the imaging"? He showed us that every single picture stopped before the coccyx. He said the coccyx is a separate image that most doctors (even some of the best) don't know about....needless to say I was shaking in anger. How could this be missed for two months as I suffered and suffered and ran to so many doctors and wasted so much money --- and that is how I got the CT and MRI imagine with these findings mentioned in this post.

(There was so much focus on the coccyx as we were still running to a million doctors trying to figure out what was going on and why I was in this horrific pain. I told every single doctor that I cannot sit and have beyond horrible pressure in the rectum that feels like knives, and a feeling that there is something in there giving pressure (when this all began and the pain as lighter, I did a few enemas, thinking maybe something was stuck in there...there wasn't). I also always said I felt as if the pain was radiating from the rectum up to the tailbone/coccyx. This was ALWAYS dismissed by every single dr, including 4 hospital admissions and 7 ER visits - not once is it written anywhere in any medical report about the rectum pressure. If was I lucky it did say 'coccyx pain', but im most instances it just said 'low back pain. Unbelievable! So make sure to check your MRIs carefully!!)

(Btw, after I was told the coccyx was not included in the images (and before I did the new ones) I was once again in the hospital, begging for some sort of pain relief - huge amounts of morphine & liquid oxycodone were not helping...they admitted me to the special spine unit. The head professor there (supposed to be one of the best) said to me that my CTs and MRIs look fine. I said to him, "well they cannot look completely fine, because there is no image of the coccyx." He said "of course there is....". I told him what I saw and what the other doctor said. He replied "With all due respect, I am one of the top doctors in the country....( (and then he paused and continued) "not that I even need to tell that to you, but everything is fine...." He went on to say their dept is not for pain relief (I said I didn't ask to be put there.... a mess.) I was sent home with prescription with Oxycontin 20mg x2, morphine 30mg x 4 (!!) and oxycod liquid. Crazy. And left screaming in pain, with a blood pressure of 180 (obviosly from the pain - I usually have low blood pressure). Very sad situation. But now I have a diagnosis with what I said from the beginning that supports my beyond horrific pressure in the rectum, knives, etc.)


So the above mentioned spine specialist/surgeon sent me to have a detailed coccyx CT & MRI. Btw, the coccyx looked perfect. I don't think he looked to much at the other stuff, but said all looks fine. Then I got the radiologist's report, and that is what I posted here. I left a message with this doctor, who replied back (again) 'it's all fine'. I will now get more aggressive after your feedbacks and demand to know more. (Especially as he is a private doctor not covered by any insurance and it cost me a fortune to see him!) If anyone can give me specific questions to ask him, would be greatly appreciated!



Lernica - You wrote that "Bone spurs occur when there is a muscular force on the bone pulling the bone away from its usual location." Is there an example of what a muscular force is? I did see a pelvic PT but was a complete waste of time. I desperately need to see another one. I am even thinking of going abroad to fine a PT that works with SIJ issues and pelvis. I think my coccyx is 100% perfect in position (not towards the left or right). This was show on both a detailed MRI and CT.

Faith - I do not suffer from arthritis that I know of - however when I had a bone scan done, it did mention some some sort of possible arthritis in the feet (each foot in a different location). Thank you so much for bringing this up - a great clue that can add to the puzzle! Lately my symptoms have been:

Hip pain (especially when walk) and if I am lying on my hip (in bed or even a beanbag) it hurts. Interestingly, the hip 'in the air', not having pressure on, it aches too. (I didn't not have this before the PN stuff began 15 weeks (or so) ago. And thought maybe the hip pain is caused by me leaning/sleeping on hip due to rectum pressure, etc.)

Lower back pain but I assumed this was radiating from the coccyx radiating from the rectum.

Buttock pain only in the areas of the bottom of the cheeks and close to where the 'crack' of the rectum begins. (Is there a nicer word for 'crack'?!

Leg Pain never. But I have had about 8 - 10 episodes of pretty bad sciatica over the past 4 months. Lasts up to two days and goes away on it's own. Pain, annoying, hate it!

I will ask my doctor (as I wrote above.) How were you diagnosed?

I have also been getting pain in the very very low pelvis area (right above where the vagina begins). Also a 'nerve-sensation' in the lower stomach. Could this be related? Other symptoms (thought were all PN related include:

Main issues today:
***Near constant low coccyx pain (sometimes severe to level of labor pain)
***Inside 'walls' of rectum extremely sensitive/feel of raw nerve sensation
***Feeling of large foreign object in rectum giving extreme pressure (To be a bit graphic, large grapefruit/melon, but instead of peel, razor-blades spinning around)
***Deep aching pains in outside, lower buttocks area
***When attempting to sit, entire area feels extremely sensitive, sometimes knives, depending on hour/day.... (making it near impossible)
***Severe pain no longer just when sitting, but in all positions (standing/sitting - sometimes when standing lately, fell like my rectum is just going to fall out!)
***Upon waking, pain much less (this leaves me frozen in bed for hours to avoid pain starting)
***Bladder irritation after urination
***Rather uncomfortable sciatica pain from buttocks to leg - has happened less than ten times (but happening now)
***(Past couple of days pain has moved to vaginal area to my dismay!) Area sensitive, very uncomfortable 'lighting bolts' in volva area. Had one episode yesterday of deep ache in mons pubis area that turned into excruciating pain (similar to coccyx pain) - was horrific, in and out of consciousness from pains front and back all morning
***Low pelvis pain
***Recently uncomfortable (but not super painful) when passing stools
***Constipation, but I am taking crazy amounts of opids, so very logical. Taking laxatives, fiber, had to do enema the other day, a mess!

Karlyn - You wrote "Osteoarthritis can occur when there are microscopic tears at the cellular level of joints and ligaments and don't heal properly." What can cause these microscopic tears? I was absolutely, positively not offered any treatment at all! It has been presented to me as there is nothing to treat. I am so confused. Would a doctor who knows nothing of the pelvis, should he pick up that something is maybe not right here??

Karlyn, you did alarm me, and that is wonderful - thanks to all of you for helping me.... I am going to follow up on this issue this week - imagine the consequences if I did not have such wonderful people like all of you in the world!!

Again, if any of you think of anything specific to ask my doctor, or can help me make a list, that would be a huge help. I am now very new to this part of the body any don't understand so much. Any other imput greatly appreciated too. YOU ARE ALL AMAZING!!!!

Len, I'm not sure what you could ask this doctor specifically -- he sounds like he already knows it all and that there is nothing wrong with you. You could ask if you can have an MRI using the Hollis Potter protocol. MRI's aren't necessarily going to show all musculoskeletal issues associated with pudendal neuralgia and they won't necessarily show muscles in spasm either. Most MRI's don't show the pudendal nerve.

You may want to get a referral to someone who can evaluate you for pelvic misalignment and SIJD problems which are often associated with low back pain. Psoas muscle spasms can be associated with abdominal pain. Some of this would not show up on an MRI.