TracyB7777 wrote:Haven't worn pants in general since last summer. It's skirts and dresses for me...which I HATE!!! I always wore pants:
I feel you hun I was always a cargo pants kind of gal...now a very feminine hippie
LOL!!! Me too!! I now wear long, flowing, tiered skirts. I don't exactly stand "ladylike" with the pain. So nothing above the knee for me!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
This thread is so close to my heart, I was always a blue jeans gal and had the bum to suit hahaha.
Now and for many years I wear skirts or dresses, sometimes comando depending on the day and the pain levels; a friend commented recently that she had never seen me in trousers ever!!!
I have recently started wearing some leggings/jeggins.....very comfy at the time for a while but still an intrusion on the crotch areas....but its nice to feel nromal without the discomfort of denim close to the skin. I suppose that we should be glad that the fashion trends lately are in favour of wearing leggins and long tops/dresses......!!!!
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.
No Jeans for me either. I do wear underwear most days unless I am in a horrible pain flare. I mostly where stretchy exercise pants. I have brown and black. Not for sure what I am going to do this summer. But I think skirts and exercise shorts will most likely be on the agenda.
Karyn wrote:.I just recently scored some pajama jeans, though! Anyone have a pair? They look just like jeans with pockets and everything, but they're sweats! I love my pajama jeans!
Karyn, I have looked at pajama jeans, but didn't know if they were worth it. Can you wear the out in public or just around the house?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Faith wrote:Karyn, I have looked at pajama jeans, but didn't know if they were worth it. Can you wear the out in public or just around the house?
OMG, Faith! I just love my pajama jeans!!!! I actually wear them more "out" than around the house. I even wear them to work on Fridays!
They really do look like REAL jeans, with front and back pockets and everything - but they're sweats!!!
They're kinda expensive. I've never spent $40 on a pair of jeans before, but I'm glad I broke down and bought (2) pairs! My only complaint is that they don't come in petites, so I had to have them shortened. Small price to pay to be able to wear "faux" jeans again!!!!
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.
Karyn wrote:OMG, Faith! I just love my pajama jeans!!!! I actually wear them more "out" than around the house. I even wear them to work on Fridays!
They really do look like REAL jeans, with front and back pockets and everything - but they're sweats!!!
Thanks Karyn! That's what I was hoping. I may just have to get me a pair. Wish me luck
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Karyn, do you find the pajama jeans true to size or did you have to order up a size to keep from having a tight fit that increases pain?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Yes, they are true to size and while I can NOT wear "regular" jeans or fitted pants of any kind, these pajama jeans really are "crotch friendly".
Good luck! I hope you enjoy them as much as I do. Oh, one more thing. They took FOREVER to get here. Ok - maybe not forever, but it was a good four weeks.
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.
I am just today finding this article and forum. I have gone to family doctor, 2 Gyn., no help whatsoever, except for giving me many different creams. Now cannot use anything. Am in pain all the time. I did not know anyone else had this problem. It isn't something you can discuss with your friends. My pubic hair is like knives trying to kill me. I tried shaving it all off. BIG mistake! I feel swollen all the time as though the vaginal area is too big for the rest of me. Is this a part of this problem. I haven't worn underwear or jeans in 1 1/2 years. I just cannot stand it. I went through the too big underwear phase, now I can't even stand that. Jeans were always too big. Abdomen is very swollen. Can't stand skirts anymore. Wear float dresses all the time. I live in a cold winter area, so that is not great, but do not know what else to wear. Have neuropathy in my feet and legs as well, so boots are out.
Does anyone also have fecal leakage. I was told if it was neuropathy, they cannot do anything. Live with it. Needless to say, between the pain and this, I am very depressed. I am 68, but would like to live the rest of my life in some comfort. I also have SLE (lupus), fibromyalgia, and Sjogren's Syndrome. Don't know if they contribute to my problems.
Mamacat, some of your symptoms sound similar to PN -- including fecal incontinence. Have you ever had an MRI to rule out other possible causes?
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.
Something CAN be done about neuropathy. Check out Dellon.com.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
I now wear long, flowing, tiered skirts. I don't exactly stand "ladylike" with the pain. So nothing above the knee for me!!
I actually wear them more "out" than around the house. I even wear them to work on Fridays! 
