Drawing of my Pain

[pianogal]

scaredgal, you are really onto something here:

Is it possible that the scar tissue just makes for a more narrow area around the nerves and if anything provokes the nerve, it swells up in the smaller enclosed areas, but isn't really entrapped? Is that why, during sleep or rest, many of us are symptomless? Then as our activity starts in the day, the nerve reinflames? And is it also possible that PN seems to stay forever and get worse because it's in such a vulnerable area that it makes it impossible to not continue to inflame it (none of us can completely go without sitting, or not take a bowel movement, or never bend, etc.)

I think so many of us got this worse from exercise... I am starting to conclude the following:

scarring creates tiny space. tiny space difficult to uninflame. exercise further aggravates and inflames tiny area. any spasm (from hip being out of alignment or pelvis out of alignment) creates further rubbing and then inflammation on the nerve. Once you are in that spot, you need to remove both scarring and aggravating instigators.

i am not explaining it like I see it... ugh. in too much of a hurry.

1- pelvis out of alignment or hip tear or something that causes muscle spasm.
2- muscle spasm causes scarring in time when blood flow is limited
3- tiny space creates inflammation and further calcification
4- pelvis continues to create rubbing which aggravates inflammation from muscle spasm or hip out of alignment
5- a tiny scar anywhere can hold the nerve down, thus making it rub against things around it causing problems
6- binding problem must be removed, scarring removed, and instigating factors fixed to eliminate cycle from starting again

ok... gotta go get ready for church (they have a couch for me to lay on there or else I wouldn't be able to go)

[grerichm]

Hello everyone, my name is gregg, and i also have PN, which started 18 months ago. I am from philly and have seen dr whitemore, and she gave me injections (helped only a small bit) and pt (helped to calm muscles down, but functionally i am not too good either and still have bladder frequency, burning and pain). I went to a physiatrist and had prolotherapy to the si ligaments, and ST ligaments as well as the hip tendons and gluteas maximus and minimus as well as the IT bands. I am waiting to see if it works, however, it flared up the bladder pain tremendously, and caused an "IC flare" the likes of which i have never had before.

I had to take predisone for a few days and valium supp's along with flexerill to calm things down. I get pain in the perineum, the lower buttocks on the right more than the left, and through the shaft of the penis. I am hopeful that the prolo will help if not i plan on trying PRP injections to those ligaments and tendons before surgery, as well as a cortisone shot into the sacrum. I believe these problems started with an injury to the sacral spine while playing football and it seems that childbirth does it for women sometimes, so there must be a ligament component to this, either a weak or tight ligament. Has anyone else done prolo for this problem?
I wish everyone well, and good luck, keep sharing information

Gregg

[KC17]

The symptoms of no pain at times (or very little) does seem that it doesn't point to an entrapment. I've wondered about that myself, even though according to Dr. Potter's MRI, she says it clearly points to entrapment in scar tissue for many of us in the distal nerves - is this really the case?

I agree. How can you be entrapped and pain free some days and not others? Your theory sounds plausible to me.

It was only after joining the gym 15 months after my daughter was born, doing major hip flexion exercises on the elliptical, etc, and having vigorous PT, that my sitting pain started and the more intense symptoms started that led me to my diagnosis.

This makes sense and so many people have instigating factors. I have none. No one thing seems to have led to this and no one things seems to put me in a flare. I literally ran around the house yesterday with my dog and had no pain to speak of doing it and none today. Maybe it's because I'm only a year out and things haven't started to totally progress yet. That thought scares me and I'm thankful every day for my good days.



Ev

Do you ever wonder if you were unconscious for 12 months and did not aggravate the area, if the nerve would heal because it would not have continuous sources of aggravation??

If that was the case I'd let them induce coma for 12 months to rid myself of this! In reality though, I still don't know how long it takes nerves to heal? Anyone know?


Krista

[Faith]

I have pain along my sacrum in the exact areas that you drew in orange (mostly on my left as well). The area in blug looks more to the right of where the sacrotuberous crosses the sacrospinous in my opinion, but maybe I am missing something. I know Dr. Potter's MRI showed you only have entrappment of the dorsal nerve, but maybe you have some hardened ligaments or there is a stretch injurty going on around the SS/ST and Dr. Potter's MRI didn't pick that up. Do you have SIJD or another biomechanical issue like a sacral torsion? If you look at this picture http://www.pudendalhope.org/node/13 the SS/ST cross where PNE usually occurs seems to be very close to the sacrum.

[KC17]

maybe you have some hardened ligaments or there is a stretch injurty going on around the SS/ST and Dr. Potter's MRI didn't pick that up.

This is very possible. Although I believe the value of Dr. Potter's MRI is tremendous, I believe in this case it really didn't address all of the problems. It really seems as if the problem is originating in the highlighted areas and that the scaring in the vestibule is secondary. (Perhaps I've had it all my life) As it mentions I'm entrapped bilat., but most if not all of my symptoms are unilat. I'm not a doctor though so I'm probably way off target.

Do you have SIJD or another biomechanical issue like a sacral torsion?

Several doctors found I was hypomobile on the left. After a couple months and a few trips to the chiropractor they said everything looked normal. Unfortunately I think maybe my it is on the opposite end of the spectrum now and is in fact hypermobile [its always popping and shifting around down there]

[scaredgal]

Unfortunately I think maybe my it is on the opposite end of the spectrum now and is in fact hypermobile [its always popping and shifting around down there]

When I was going through my SIJD journey, I saw so many PT's and chiropractors. Although many professed to be experts, it's amazing how some said I was "stuck" or hypomobile on one side and some said I was hypermobile. Just as a caution to anyone going down the PT route, be very cautious about how they want to adjust you. I am not bashing chiros, because I know there are some good ones out there - but most I went to were of the opinion that I was "stuck" and wanted to do a side lying forceful adjustment to my SI joints. Unfortunately, if you are hypermobile, this just further stretches the ligaments and make you more unstable (and I would think more likely to have an issue with the loose ligaments rubbing against the PN nerve). I never let them do that to me, fortunately. Most of the manual PT's I went to would do more of a gentle manipulation and stress stability and strengthening over loosening the "stuck" joints. Just my two cents

[Robyn]

KC17,

Where did you locate the drawing of the buttocks you used?

I'd like to do a "pain areas" drawing too.

Many thanks,
Robyn

[KC17]

Robyn,

You will find it within the following article.


http://www.ispub.com/ostia/index.php?xm ... luteus.xml


Best Regards,
Krista

[Faith]

I am not bashing chiros, because I know there are some good ones out there - but most I went to were of the opinion that I was "stuck" and wanted to do a side lying forceful adjustment to my SI joints. Unfortunately, if you are hypermobile, this just further stretches the ligaments and make you more unstable (and I would think more likely to have an issue with the loose ligaments rubbing against the PN nerve).

I totally agree Scaredgal! I think this is exactly what happened to me. I was 6 months postpartum and my PT found I had SIJD, but I was still breastfeeding so I believe my joints were still hypermobile due to the relaxin hormone still being in my system. I wasn't even having SI joint pain, just pain with intercourse! I let her manipulate my right SI joint which caused me to have severe sacral burning and sitting pain that has continued to progress to my sit bone area and everywhere else the PN innervates! The interesting thing is now it my left side that is so much worse, but I think maybe it's because the PT had me lay on my side and put my legs around her (like a scissor) and then agressively had me resist while she pushed. The crazy thing is she said I was hypermobile. Now, with all I've learned, it makes not sense why she would do that "adjustment" if I was hypermobile. She should have just focused on strengthening in order to stabilize the joint. If anyone has any of you PN sufferers do this...don't!

[Robyn]

Krista/KC17,

Thanks a bunch for the thread to the buttock picture you drew to show your painful areas. I think this can really save time explaining "where it hurts" when your in a short, limited time with your doctor and have many PNE issues to talk about.

From scaredgal "Is it possible that the scar tissue just makes for a more narrow area around the nerves and if anything provokes the nerve, it swells up in the smaller enclosed areas, but isn't really entrapped? Is that why, during sleep or rest, many of us are symptomless? Then as our activity starts in the day, the nerve reinflames? And is it also possible that PN seems to stay forever and get worse because it's in such a vulnerable area that it makes it impossible to not continue to inflame it (none of us can completely go without sitting, or not take a bowel movement, or never bend, etc.)"

I too agree with this line of thinking that some of us are not truely entrapped. Because while sleeping we are not using any of our muscles, ligaments, etc. and in just that short space of time, 6-9 hours of sleep, is enough to calm down what ever is causing the pudendal nerve pain. I have experienced this for 7.5 years. This fact and the fact that "sitting on a toliet seat creates no pain" are the ONLY symptoms that have been consistent for me over these long, painful years.

The other thing that is happening when we are sleeping is that we are in a horizonal position, which removes any downward pressure on any of our structures. I've often wondered if this could be a contributing factor to waking up the next morning pain free. Or maybe its a combination of the horizonal position and the lack of any movement of muscles, ligaments, etc.

Has anyone used an inversion table consistently for a long period of time.....say 3-6 months?

Or has anyone tried using a machine that some chiroprators have, the DRX5000 or DRX600 ?

Every little piece of the puzzle we can find, may lead us to pain free days

Robyn