Underwear/Jeans/Just Curious

Here we can discuss difficulties with comfort in sitting and normal living - cushions, bicycle seats, car seats, work stations etc.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Underwear/Jeans/Just Curious

Post by nyt »

Mamacat, a company called Uroplasty does posterior tibial nerve stimulation for urinary incontinence with really good success rates. They are now in clinical trials to use it for fecal incontinence. You might want to look at their website and see if there is anything that might be of help.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Underwear/Jeans/Just Curious

Post by HerMajesty »

mamacat42,

Also check out the Tarlov Cyst Disease Foundation website as the distribution of you symptoms sound like you might have symptomatic tarlov cysts. If you have already had an MRI of your pelvic and / or sacrum, sacral tarlov cysts would show up however many radiologists ignore them when writing the radiology report. To rule out tarlov cysts you would have to request that your films be reviewed again with any tarlov cysts noted instead of ignored. Pelvic pain like you describe, with bladder and / or bowel problems, would be typical of symptomatic tarlov cysts at S2. It can also be due to many other causes but that is an easy one to identify.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Bathsheba
Posts: 66
Joined: Sat Oct 15, 2011 6:18 pm
Location: Northern, VA

Re: Underwear/Jeans/Just Curious

Post by Bathsheba »

I have gotten to the point where not only can't I wear any underwear, I have to wear a loose dress. Forget jeans. I used to be able to wear a loose stretchy lycra black skirt, but no more. I cannot stand any pressure on my pelvis. I have to manipulate my seatbelt when I drive.
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
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shawnmellis
Posts: 227
Joined: Sat Dec 04, 2010 8:42 pm
Location: Concord, NC USA
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Re: Underwear/Jeans/Just Curious

Post by shawnmellis »

I actually cut a 1 inch slit in the front middle part of the underwear from the top. It helps to not make the underwear so tight with the elastic. I also most of the time wear loose fitting nylon or polyester or other kind of sports jogging pants in the winter and occasionally very loose baggy jeans in the winter, or loose fitting sports shorts in the summer. I try to stay away from belts as much as possible, especially during bad flares of pain or bladder/urinary problems.
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Re: Underwear/Jeans/Just Curious

Post by Amanda »

The hardest part of having pudendal nerve problems for me is the restrictions on what type of clothing I can wear.
When out shopping it is so hard to see lots of jeans and trousers knowing that I cannot wear these clothes. We all make huge adaptations to allow for comfort.
Thankfully the latest fashions are fairly generous on comfort.
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.
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birdlife
Posts: 172
Joined: Mon Oct 11, 2010 1:56 am
Location: London, UK.

Re: Underwear/Jeans/Just Curious

Post by birdlife »

I havent worn jeans for 4yrs and i used to live and die in them, especially as I was a biker before PN struck. Now the bike's languishing in the garage despite its well padded seat and I have to wear stretch leggings that aren't too tight. Can't wear shorts, as basically they are just short jeans arent they and have too many seams! The softer shorts somehow make my legs look like upside down skittles, and I'm too vain to wear them :lol: . Rarely wear dresses as that means wearing tights as well. Panties need to be one size too large and no tight elastic round the leg, preferably french knickers. Or I can get away with stretchy thongs sometimes if they are at least 2 sizes too large. I'm the same with belts Shawn, they put too much pressure on the bladder and the very wide fashion ones restrict the piriformis, causing the odd sciatic twinge :roll: . I was going to say how we suffer for our vanity, but its just plain how we suffer!
PN, possible entrapment at ischial spine -Dr.Natasha Curran, National Hospital for Neurology, London.
2 -Xray guided double nerve blocks -Dr.Baranowski - no relief.
TP self-massage reduced piriformis pressure on p nerve.
Dr.Greenslade/Bristol:
CT guided block (left) 16.7.12- success! Could sit without a cushion! On a brick wall!
06/2/13 - Sit pain gradually returned, L3. Offered further CT-guided block, or an op. Had to decline at time.
Feb '15. Applying to be referred again to Dr G.
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hibiscus
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Joined: Tue Jul 05, 2011 9:56 pm
Location: London, UK

Re: Underwear/Jeans/Just Curious

Post by hibiscus »

Like most of us, it seems, I find it impossible to wear jeans any more, or any other kind of trousers really (I am in the UK - here if we say pants it means underwear). Mostly I wear skirts, but as I can't wear tights either (do you call them panty hose in USA?) it is not so easy in the cold weather here in the winter, so I have taken to wearing long skirts with warm socks most of the time. Not a very glamorous look, but comfort means more to me than fashion these days, and it is possible to develop a kind of individual, unconventional look of your own.

I also feel more comfortable without underwear, so go without at home, and sometimes when I am out as well. I feel that you just have to go with what works best for you, ans stop worrying about what other people might think.
I have had PN for over 10 years. Don't really know the cause, but has worsened over the years. Referred to many different specialists, including gynaecology, orthopaedics, counselling, acupuncture and homeopathy! Finally referred to Dr Curran, colleague of Dr Baranowski and eventually felt problem was understood. Has 4 nerve blocks. Prescribed pregabalin and duloxetine. Not enjoyed side effects so currently trying to manage without. Soon to start on pain management course.
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