Do you have trouble walking?

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Do you have trouble walking?

Post by Lernica »

Just wondering how many PNers have trouble walking. I cannot walk for more than twenty minutes (very slowly, like a very old lady) until my sacrum starts feeling like it's getting pulled apart and the pain shoots up to 9 or 10. If I'm alone in experiencing this symptom then I will explore other possible causes for it.

Thanks.

Warm regards,

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
JeanieC
Posts: 198
Joined: Tue Sep 21, 2010 11:47 pm

Re: Do you have trouble walking?

Post by JeanieC »

Hi Lernica,

I am sorry to hear you have so much trouble walking, and have had to give up working because of pain.

To answer your question, I don't have trouble walking as far as my sacrum hurting. My perineal/rectal pain is still there when I walk but I find it one of my better activities as it takes my mind off the pain a bit . My sacrum does hurt when I wake up in the morning and won't go away until I get out of bed and massage the area, then the pain moves quickly to its usual place in the pelvic floor. This was present before PNE surgery too.

I am sure you are not alone, though, as sacral pain is mentioned quite a bit on the forum.

Best wishes,
Jeanie
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

Re: Do you have trouble walking?

Post by river133 »

I agree with Jeanne, i have walked for the past 2 years with this pain and I do also forget somewhat about the pain... I am still waiting for the rectal pain to subside since surgery 4 weeks ago... Guess I have a good while to wait for it to get better... Very darn cold here up in Mn.. Below 0. Just need for it to get a bit warmer before I get out there again... I do hope you can get your pain figured out so you can go out waking , It is so good for our spirits... I wish you well and send you warm hugs... Ellie
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
User avatar
Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: Do you have trouble walking?

Post by Amanda »

Lernica

Walking is the greatest cause of pain for me at times, I generally use a crutch to lean on when the spasms hit when Im walking....the worst part for me is the bladder spasms when I walk as any friction seems to make me want to go to the loo more often!!!
I do try to walk often to keep muscles active however I have to be careful as too much does cause terrible flareups.
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.
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Do you have trouble walking?

Post by Karyn »

Yes, walking is a problem for me, too. I can get by from room to room, but that's about it. Even going from the parking lot to the store is an adventure. My sacrum starts screaming at me, I get these stabbing/pinching/pulling sensations in the creases of my legs, buttocks sciatica, abductors, feels like razor wire wrapped around my hips and electric shocks in my pubic bone area. I also have a really, really hard time with unever surfaces (inclines & declines). Anyone else have a problem with any of these?
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.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Do you have trouble walking?

Post by nyt »

Alot of walking is a problem for me. I also walk like an old lady and don't go very far. Several of my neighbors ask if I want to walk with them and say "No can do." Inclines, declines and stairs are problematic. Stairs kill me. We sold our 2 story house last year and moved into a ranch because the stairs were such a problem. I plan my day if we are going grocery shopping because that is all I can do. We do try to swim twice a week for exercise and I have a modified yoga and Tai Chi routine I do every morning. Trying to find the balance to keep moving without flares can be a HUGE challenge.
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
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Do you have trouble walking?

Post by Lernica »

OMG (as my kids would say) it's SO good to hear that others having the same problems walking as me. I mean, I feel really badly for you, but it warms my heart to know that I'm not alone. I continue to be amazed at how disabling PN can be; how a little "ribbon" of a nerve can cause so much pain and disability (to quote Prof. Vancaille (sp?)).

In my case, I feel all the muscles of my pelvis tightening up when I walk, and by the end it feels as if my pelvis muscles have locked right up. Has anyone tried taking muscle relaxants to help with the walking?

I am waiting to see a pelvic floor PT; she's not available until February. Hopefully she can teach me some pelvic muscle relaxation exercises.

For me, inclines and stairs are harder to walk on than flat surfaces, but going down stairs is fine. Sometimes I feel like a good workout might be to find a highrise building and walk down several steps of stairs and, if possible, to repeat the process after taking the elevator up again. I will do this once my pain starts abating and I can walk comfortably again. I'm hoping the Gabapentin will help me soon. So far it has had no effect whatsoever on my pain.

I have stopped going grocery shopping. I send hubby.

Thank goodness I can swim. I go to the local Y every day for a 20 - 30 minute front crawl swim, followed by a looooong soak in the hot tub whirlpool. It's heaven, it's hot and it's gravity-free.

Warm wishes from your sister in pain,

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
drds89
Posts: 18
Joined: Tue Oct 19, 2010 2:52 am

Re: Do you have trouble walking?

Post by drds89 »

My first time, during recovery, stairs and walking briskly were not a problem (gave up inline skating for risk of falling again) and about 3 months into recovery, found myself bounding up the stairs like nothing ever happened.

THIS TIME, no way. I still cannot step up with R leg, go up steps only once a day (for bedtime), L leg up, one step at a time, very slowly. I cannot walk for recreation, only short distances and slowly, otherwise, there will be a flare. My teaching 1/2 day Tuesday afternoon, requires a lot more walking, and everyone there knows what kind of day it is by how I'm walking (normal pace vs 90 year old).
Fell skating 2008. Abnormal PNMLT R perineal branch 12/08. Pudendal block +relief for several hours. Complete recovery, off medications, using cushion after 9 months; re-injured late 2009 doing yardwork. Major flare after injections 2&3 Feb. 2010. No sitting/hyperprotecting since 2/2010 to present. Symptoms gradually better, but not like the first time; still with pain up to 5, but 1-3 most common and 0 while recumbent.
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Do you have trouble walking?

Post by TracyB7777 »

Walking actually feels really good. I'm not sure if its just getting outside into the sunshine (live in so az, it's beautiful here right now). It definitely helps my mood. I can tell you that during a flare I do find myself dragging my left leg and walking like a little old lady. I still do the shopping but again, having to sit to drive doesn't help and I end up on the couch for the rest of the day/night.
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. :(
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Do you have trouble walking?

Post by pianogal »

gosh, I'm not alone!

walking used to be fine when I first had pne, but over the past 4 years it has been bad. The botox made it much worse for me... making trips to the store flare me up whereas before I could spend 4 hours at disneyland with no problems. I hope the botox wears off soon.

i get a pinch in my labia on the right side pre- botox. Post botox, I am limping along like an old lady... in fact sometimes old ladies pass me.

my sacrum doesn't hurt with walking though. I recommend trying a sacroiliac belt and see if that helps you out.
-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
Post Reply

Return to “WELCOME CENTER”