Sensitve topic

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
shljk
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Joined: Wed Feb 02, 2011 4:18 am

Re: Sensitve topic

Post by shljk »

smitzel wrote:Add me to the list of clitoral pain. It is easily the worst of my symptoms. I would love to connect w/ any of you to find out how you deal with it. I am on 100mg of gabapentin 3x/day (a total of 300mg/day). I started w/ 300mg 3x/DAY (total of 900) and that was way too much for me. the 100mg tabs are so much better for side effects!! But, I don't know, when I get a flare my clitoris is so incredibly sensitive that every movement is out of this world. The gaba has helped. Also I am seeing Dr. Hibner in December and heard about the dorsal nerve injections he is now doing so that may be of some help but extremely anxiety provoking b/c one has to be put under for it. Any help on how you all deal with this would be great, with me it's mostly anxiety and emotionally dealing with the pain. Also, I live in MN if there is anyone out there with the same symptoms who would like to get together to discuss. Good luck and healing to us all. ;)
I'm also having some clitoral pain ever since I had left sided PN surgery with Hibner on Aug 1. Before, I had on/off periods of clitoral hyperarousal; now I have hyperarousal but when the clitoris is touched, it's oddly sensitive in mildly painful way -- weird. Hopefully, it'll resolve soon!

I'm also in MN -- St. Paul -- and saw Dr. Antolak (not a fan!) and the PTs at MAPS for six months or so.
susibee
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Location: New Hampshire

Re: Sensitve topic

Post by susibee »

Clitoral pain is also a problem for me.

I'm still unclear as to whether this is a sign of dorsal nerve entrapment or not. Dr. Dellon seems to think it is (of course, I think that's partly because that's the surgery he performs - dorsal nerve release). But then, I know pain can be felt further along a nerve when there is an entrapment further back. So, I'm just not sure.

I guess that's why Dr. Hibner is trying to isolate the dorsal branch with a block?

Has anyone had this done?
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
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Karyn
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Location: Lowell, MA

Re: Sensitve topic

Post by Karyn »

Well, it's a tricky diagnosis to be sure.

From my MRI Report:
"There is scar surrounding both dorsal nerves to the clitoris".

Then from my Operative Report:
"We were able to identify the clitoral branch of the nerve, as well as where the nerve split between the perineal and inferior rectal branch. We then proceeded with complete skeletonization of the nerve and it's branches , tracing them into their fascial tunnels, the clitoral nerve passing above the alcox canal and the other branches passing through the alcox canal".

So, it would seem to me that it depends on how our nerves run in our bodies. :?:
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Violet M
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Re: Sensitve topic

Post by Violet M »

carolynm wrote:Helen,

I"m thinking wherever the nerve is irritated/entraped, it affects the branches and areas distal to that entrapment. Is that correct ladies and gents?

cari
Right, Cari
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.
susibee
Posts: 60
Joined: Wed Mar 16, 2011 4:12 am
Location: New Hampshire

Re: Sensitve topic

Post by susibee »

carolynm wrote:Helen,

I"m thinking wherever the nerve is irritated/entraped, it affects the branches and areas distal to that entrapment. Is that correct ladies and gents?

cari
Well, unfortunately that can't be assumed. Pain can radiate "up" behind (i.e., proximal to) an entrapment.

For example, in carpal tunnel syndrome, the nerve in entrapped at the wrist (in the carpal tunnel), but people often have pain going up their arm toward their shoulder, rather than just in the hand/fingers.
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Sensitve topic

Post by Violet M »

I agree Suzi, that pain can radiate to other areas and start affecting muscles throughout the pelvis causing pain proximal to the site of entrapment, but it can also affect whatever is distal to the site of entrapment.
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.
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