I don't know if I'm in the right place or not. My post isn't about medical advances but I am hoping to learn something.
Aside from the feeling of having Freddy Krugar living in your crotch and up your poop shoot (that burning, stabbing, scraped raw feeling), does anyone feel their pain in shapes? What I mean is, a good deal of my pain is linear. I feel it in straight, sharp lines. I can even feel the various thickness and lengths of these lines. The only area that I really feel circular pain is on (in?) my sacrum. Well, that's more like a "blossomming" pain. I don't know if I'd also consider this "circular" pain or not, but it feels like someone took a nail gun and shot brads around my rectum, then made a precise trail across my perineum to strategically go around the perimeter of my vulva and labia. And then I've got these lines of pain on either side of my sacrum, going down to the bottom of my butt, which also feels severely bruised and tender. As if Paul Bunyan has been kicking me with all he's got, wearing steel toed work boots. I feel sharp lines wrapping around the crest of my hips and in various places throughout my lower abdomen:
the front insides of my hips going to the pubic area, on either side of my pelvic bone, on top of my pelvic bone, creases of my legs, and a straight line going from under my belly button to the pubic bone. Any ideas?
Warm regards,
Karyn
Do you feel your pain in shapes?
Do you feel your pain in shapes?
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.
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.
Re: Do you feel your pain in shapes?
Yes, Karyn, sometimes I feel linear pain. Especially when it's a shooting or pulling pain. I imagine it's the same shape of the nerve itself. My burning pain is just all over, no shape.
Emily B.
Emily B.
Re: Do you feel your pain in shapes?
The initial sharpest pain I had felt like it was about 1.5 inches long and thin; for me it was the sensation of pen knife blade pressing against the bone. I got some new pain from an unguided block; it was like a long string on the external skin.
These sensations are really something, aren't they? In the first year post op I used to get some short pain episodes that felt like a needle being injected into the skin slowly. Even now, a couple of times a year I will get a sort of a zap sensation, along the lines of what it feels like if you bite down on aluminum foil on a tooth that has a filling. It too only lasts a couple of seconds, but again it's so weird how the mind tells us what it is!
These sensations are really something, aren't they? In the first year post op I used to get some short pain episodes that felt like a needle being injected into the skin slowly. Even now, a couple of times a year I will get a sort of a zap sensation, along the lines of what it feels like if you bite down on aluminum foil on a tooth that has a filling. It too only lasts a couple of seconds, but again it's so weird how the mind tells us what it is!
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Do you feel your pain in shapes?
You describe my pain exactly. In addition, I get burning/tinging sensations on the outside of my labia and shooting up the nerve towards the piriformis (like electric shocks). The stabbing knife pain is in my left Alcock's canal and rectal area. The rectal area does feel scraped raw. The stabbing is surrounded by a "blossoming" of the kicked by a horse feeling of a deep ache, intense in nature. The sacrum feels like a burning circle. I am now walking tilted toward the right because I try and take so much pressure off my left side. I am now developing low back pain because of this.Karyn wrote: I don't know if I'd also consider this "circular" pain or not, but it feels like someone took a nail gun and shot brads around my rectum, then made a precise trail across my perineum to strategically go around the perimeter of my vulva and labia. And then I've got these lines of pain on either side of my sacrum, going down to the bottom of my butt, which also feels severely bruised and tender. As if Paul Bunyan has been kicking me with all he's got, wearing steel toed work boots. I feel sharp lines wrapping around the crest of my hips and in various places throughout my lower abdomen:
the front insides of my hips going to the pubic area, on either side of my pelvic bone, on top of my pelvic bone, creases of my legs, and a straight line going from under my belly button to the pubic bone.
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
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
Re: Do you feel your pain in shapes?
Karyn, I used to feel pain in a line along the course of the nerve.
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.
Re: Do you feel your pain in shapes?
I have thought about the shapes of my pain and can now report that for me it is definitely a circular shape....rotating around the vulval region but circulating around both hips too....Ive experienced those stabbing pains a lot today and it reminded me of how things can reinstigate themselves after a little activity......I took the vacumn out for half an hour today!!! Not normal really...how frustrating is this!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Do you feel your pain in shapes?
Hi Amanda,
It's very frustrating and difficult for even me to comprehend! How do you explain to people that you're experiencing a severe pain flare and are crippled from food shopping ... several days ago?!?!? How can I not be able to go food shopping by myself anymore? Or wash my windows and sills? I can understand other peoples disbelief, because it sounds so stupid to even my own ears!Amanda wrote:Ive experienced those stabbing pains a lot today and it reminded me of how things can reinstigate themselves after a little activity......I took the vacumn out for half an hour today!!! Not normal really...how frustrating is this!
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.
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.
Re: Do you feel your pain in shapes?
But ... I DO understand you, Amanda. I do understand all of you and these mind boggling, devastaing consequences of simple vacuuming!!
Warm regards,
Karyn
Warm regards,
Karyn
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.
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.
Re: Do you feel your pain in shapes?
Karyn
I know it sounds unreal when we report how a simple task can render us unable to do things days later.
As for supermarket shopping, i generally try to do this online....especially for heavier things. When I want to go and choose things myself I take a trolley and this saves me having to carry things....it makes me feela little normal I suppose....!!!!!
I know it sounds unreal when we report how a simple task can render us unable to do things days later.
As for supermarket shopping, i generally try to do this online....especially for heavier things. When I want to go and choose things myself I take a trolley and this saves me having to carry things....it makes me feela little normal I suppose....!!!!!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Do you feel your pain in shapes?
Does anyone know why it hurts so much to use our arms? You know, that pinching, stabbing, tearing feeling in the lower abdomen and groin area? Even if there's no significant weight to reaching for or pulling something towards you?
Warm regards,
Karyn
Warm regards,
Karyn
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.
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.