Drawing of my Pain

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc
KC17
Posts: 96
Joined: Fri Sep 17, 2010 2:07 pm
Location: Orlando, FL

Drawing of my Pain

Post by KC17 »

Hi everyone,

I got bored and thought I might try something to show where my gluteal pain is and see what others thought. I didn't know where to put this so moderators please feel free to move it to the appropriate spot.

The orange areas are where I have the deep ache. The area of blue speckles is where I can scratch to elicit the genital pain. Is this similar to any one else? It seems very lateral to me so perhaps somebody who has surgery could tell me how close this area relates to their incision. I feel like the blue area doesn't correspond at all with that nerve. Either that or my interpretation of all of these diagrams has been so so wrong! :?


Krista
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gluteus-fig2.jpg
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Pain started suddenly April 2010.
3T MRI w/ Dr. Potter, January 2011 shows bilateral impingement of the dorsal nerve of the clitoris.

Unsure what to do next because my pelvis is a mess.
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

Re: Drawing of my Pain

Post by Lernica »

Krista,

I have the same painful areas as you but on the left side! Don't have the scratching symptom, though.

Also, my sacrum pain is burning, not deep aching, as you described it.

Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
KC17
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Joined: Fri Sep 17, 2010 2:07 pm
Location: Orlando, FL

Re: Drawing of my Pain

Post by KC17 »

Lernica,

Mine is also on the left. I have no idea why I colored on the right. Either way though, it still corresponds to the same area. I have no burning, never have. This nerve is tricky!

Thanks for your reply.

Regards,

Krista
Pain started suddenly April 2010.
3T MRI w/ Dr. Potter, January 2011 shows bilateral impingement of the dorsal nerve of the clitoris.

Unsure what to do next because my pelvis is a mess.
TinyDancer
Posts: 46
Joined: Wed Nov 17, 2010 9:07 am
Location: Northern Virginia

Re: Drawing of my Pain

Post by TinyDancer »

Krista,

I too have a lot of pain on the left side where your blue dots are. I have tried to find out if it could be hip pain but it's all clear. I have read that SI problems can cause pain there. My SI joint is not good and my PT is going to work on that somewhere down the road after surgery.

Kate
Surgery with Dr. Micheal Hibner March 14, 2011
Am 85% better in only 5 months and so grateful to Dr. Hibner
THIS FORUM ANSWERED ALL MY QUESTIONS!!!
My thanks to all of you.
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Violet M
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Re: Drawing of my Pain

Post by Violet M »

Krista, take this picture http://www.pudendalhope.info/sites/defa ... Female.jpg and superimpose it on your picture. Do you see where the sacrospinous and sacrotuberous ligaments cross at the ischial spine? That's a typical place for pudendal nerve entrapment. Pressing on that spot can create what is called tinel's sign (although I think it is usually done internally via the vagina or rectum). But it looks to me like that your blue spots are over that area. It seems like you would have to press a bit harder than just scratching to get a tinel's sign but who knows? Stranger things have happened with PNE.....
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
pianogal
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Location: Orange County, CA

Re: Drawing of my Pain

Post by pianogal »

but Krista, do you have any vulvar or perineal pain?
If you answer with no...

then your pain may be other than Pudendal. It could be your Piriformis muscle, your gluteus maximus muscle, your cluneal nerve, your SI joint, your hip, your low back....

so, please do clarify if you also have vulvar or perineal pain. If not, this map shows me you need to change directions. In my humble opinion... as a non doctor but long time PN sufferer married to a PT, if that's any help. I quizzed him real quick and showed him your pic asking his opinion.

try looking up dermatomes of nerves and various muscles
I did a quick search and came up with some images already
http://www.chiropractic-help.com/images/PIRIFORMIS3.jpg
http://www.glowm.com/resources/glowm/gr ... 0/006f.jpg
http://www.chiropractic-help.com/images ... matome.jpg
http://spinepainny.com/images/dermatome.jpg
or for a few bucks, you can buy netter's anatomy book online used and get some clearer guidance.
sorry I'm only giving you pieces of the puzzle cause I can't find the best image yet... but please consider the question of your perineum and vulvar region... as I'd hate for you to go down the wrong road if you don't have to.

but wait....
3T MRI w/ Dr. Potter, January 2011 shows bilateral entrapment of the dorsal nerve of the clitoris; not entrapped in SS/ST or Alcock's.
???? now I'm just confused. how could the dorsal nerve refer so many random places.

I mean, I too get the blue dots area causing problems I admit.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
KC17
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Location: Orlando, FL

Re: Drawing of my Pain

Post by KC17 »

Violet-- I agree that looks like the area. I just don't understand what is going on. If I push in that spot I get nothing...but if I scratch (and I mean the lightest scratch possible) it causes the pain.

Pianogal--

Yes I have pain mostly in the clitoris and occasionally the urethra and rectum. So it definitely points to the pudendal nerve then, but like you said how can just the dorsal nerve be referring pain to all of these areas especially those through the buttocks and up to the sacrum?

I just don't know, it's all so confusing. Some days I have no pain I literally go from 9am-9pm before I start feeling an increase in pain. This can go on for days, and then wham I do nothing different and I'm bed ridden. Seems as if there is scar tissue entrapping the dorsal nerve I'd be in pain all the time not some of the time.

Anyway, thank you for your replies ladies. As always I greatly appreciate it.

Warm Wishes,

Krista
Pain started suddenly April 2010.
3T MRI w/ Dr. Potter, January 2011 shows bilateral impingement of the dorsal nerve of the clitoris.

Unsure what to do next because my pelvis is a mess.
scaredgal
Posts: 153
Joined: Tue Nov 30, 2010 3:24 pm

Re: Drawing of my Pain

Post by scaredgal »

Just throwing my two cents in...

Only since my epidural to S2/S3 and S4 have I had pain in the yellow areas in your diagram - at times it's achiness, at times it's burning. These are the location of the sacral nerve roots of the pudendal nerve. The injections were supposed to dampen the pain signal - well, guess what - just the opposite. So, I think that's the explanation of that area (IMHO).

Yes, I think the blue dots correspond to the area of the crossing of the ST/SS ligaments. As an oversimplistic explanation, it seems I read once that both scratching and tickling provoke free nerve endings - free nerve endings can also cause pain. Does it seem plausible that by scratching that area, there is some nerve cross talk from those free nerve endings to the damaged pudendal nerve?

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? 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.)

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??
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A's Mommy
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Re: Drawing of my Pain

Post by A's Mommy »

Krista,
I looked at your picture then I looked at the one Violet posted and suggested you superimpose on your picture and I just don't get it. I think for me, I always knew my entrapment was lower, but there was so much referred pain to different areas along the nerve from the vigorous PT I had before my surgery. I would get tingling and burning all the way up into the Piriformis muscle, and my PT was having me lay on the floor and roll my Piriformis on a foam roller... irritating the already entrapped nerve. I don't know, the more and more I think about this.... I'm just not sure about PT for patients with true entrapments. Not saying you have one... I don't know.... it's just that no amount of PT thus far has ever done anything but either cause me more pain or give me no change. A good PT, such as Loretta (of Dr. Hibner's) would admit that they are "learning" among with us patients. I call that humility and honesty. There is just still so much to learn about Pudendal Neuralgia and Pudendal Nerve Entrapment. It's so frustrating, I know. I am with you on the frustration. :roll:
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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A's Mommy
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Re: Drawing of my Pain

Post by A's Mommy »

scaredgal wrote: As an oversimplistic explanation, it seems I read once that both scratching and tickling provoke free nerve endings - free nerve endings can also cause pain. Does it seem plausible that by scratching that area, there is some nerve cross talk from those free nerve endings to the damaged pudendal nerve?
Scaredgal, to me this makes complete sense. Dr. Hibner once explained something to me along the lines that a damaged nerve grows little "sprouts" which I guess could be described as "free nerve endings." The "sprouts" would be trying to conduct electrical signals to the brain, I guess, because they are connected to the main trunk of the nerve, but maybe because of the light scratching, the "sprouts" give off that itchy, tingling, burning feeling. Who knows. I'm just theorizing here.
scaredgal wrote: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?
Well, Dr. Hibner believed that I got my entrapped nerves from my pregnancy and not childbirth. And for the longest time (probably a year) I can only remember having bladder symptoms, a la IC symptoms, and that's why I went chasing the IC diagnosis. I only remember little amounts of time that I would get any burning or tingling, and this was always across my pubic bone, and not in the Alcock's canal where my entrapment(s) were/are. 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. But, Everyone is different. Who really knows?!?
scaredgal wrote: 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?


Ahhh, the blessed sleep. Before my TG on the left, my sx were so bad that it would take at least an hour of lying prone (face down) for the pain in my Alcock's canal to go away. Then, I would drift off into a drugged, Valium suppository induced sleep and wake up in the morning scared because I know the pain would just mount as the day went on. From the very beginning, like right after my daughter was born, this was the same way. I would love to go to bed at night, because I knew the bladder pain would go away at night, but I would wake up scared in the morning because I knew with that first "pee", I was in for it.
scaredgal wrote: 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.)
Everything you are saying makes sense.
scaredgal wrote: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??
I believe only if it was not truly entrapped. IMHO.
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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