Sitting & standing toerance

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polarbear
Posts: 52
Joined: Sun Aug 07, 2011 7:28 pm

Sitting & standing toerance

Post by polarbear »

Hi everyone,

Due to pne and unsuccessful surgery I am unable to sit in any capacity. I also have a standing tolerane of 20-30minutes on a good day. I see many posti ngs with sitting difficulty, but standing was not mentioned. I have had pne for 11 years, and my standing tolerance keeps getting worse.

Does anyone have standing problems?

Gail
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Sitting & standing toerance

Post by Karyn »

Hi Gail,
Welcome to HOPE! I'm glad you found us! :D
I'm so sorry you're still having such a hard time. Who was the doctor who informed you that you had PNE but had to live with it? And WHY??????
Could you please describe what you're feeling and where, when you stand? My heart goes out to you, Gail. I understand what it feels like to be able to only lie down - and even that hurts after a while.
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.
polarbear
Posts: 52
Joined: Sun Aug 07, 2011 7:28 pm

Re: Sitting & standing toerance

Post by polarbear »

Hi Karyn,

I spoke to a dr. In New York and one at Henry Ford Hospital in Detroit. The don 't recommend any further surgeries or treatment . Pain is manageable if I lay or lean on side. I have been told that all I can do is manage the pain and my favorite is " it is what it is".

With regard to standing, if I stand more than 20-30 minutes, a sharp knife like pain will come on within minutes and I need to lay down on my side and wait for the terrible intense pain to go away . This intense pain is in the coccyx region and there is tingling/numbness in the genital region . This pain usually last around 30 minutes . All I can do is cry and focus on breathing to get through the pain .

Hope this explains things.

Gail
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helenlegs 11
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Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Sitting & standing toerance

Post by helenlegs 11 »

No one, even a doctor, understands the pain (any pain really) unless they have suffered it themselves. OK if there is a way of controlling it enough through lifestyle adaptations and medication to make it tolerable, fantastic, but I think they have a cheek to say 'it is what it is' and live with it. Have they explored every option available, do they know about PN and alternative therapies. Has anyone tried a guided block or suggested it at all.
I'm getting mad now , you may have answered these questions on other posts polarbear, but this type of narrow minded 'doctoring', when they can't be bothered to think outside the box (their own box made from their own blinkered, 'I know it all' ego's) is so not what we expect from physicians who's job is to help us.
Phew! have calmed down :) I hope you have looked at the home pages and are getting a second opinion.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
HerMajesty
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Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Sitting & standing toerance

Post by HerMajesty »

I had standing intolerance due to neurogenic bladder not pain (i.e., standing was a constant battle against incontinence). But a lot of pudendal patients have standing intolerance due to pain it seems to me.
I am awaiting S2 tarlov cyst surgery and the surgeon I spoke to said that standing intolerance is common in that segment of the PN population, so something to look into if it has not been ruled out - majority of tarlov cyst patients have not only PN but leg and / or sacral pain / neurpathies.
There are sooooo many things I would like to say about that Doc who told you to just manage the pain but most involve descriptions of torture and are quite un-Christian so I will just say I disagree with him. Keep digging til you find your answer, don't give up!
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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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Sitting & standing toerance

Post by helenlegs 11 »

OOOPS! I did mean to mention that I have standing difficulties (and walking) but that is from sciatica rather than any pudendal pain. My heels are affected.
That's all I was going to put until I saw the statement 'it is what it is,' ha ha! How did they determine you had coccydynia, could it be possible that you had PN all of the time or did the subsequent surgery relieve the symptoms, sorry I don't know much about coccydynia. Probably haven't even spelled it correctly.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Sitting & standing toerance

Post by HerMajesty »

hi Helen, don't be intimidated by medical terminology it is a fancy way of saying coccyx pain, aka tailbone pain ;)
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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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Sitting & standing toerance

Post by Violet M »

Gail, I'm sorry you are having a difficult time with standing. I wanted to let you know you are not alone. I had a lot of pain in all positions and could not stand for very long either before surgery. It was difficult even to cook a meal (even TV dinners were challenging!)

Take care,

Violet
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.
polarbear
Posts: 52
Joined: Sun Aug 07, 2011 7:28 pm

Re: Sitting & standing toerance

Post by polarbear »

Hi Helen

Thanks for venting the frustrations with doctors and there rude comments. I have trouble getting angry, so you comments got me riled up. Your right, I should get more opinions. Thanks for the inspiration to keep fighting, I have been feeling burned out.

Gail
polarbear
Posts: 52
Joined: Sun Aug 07, 2011 7:28 pm

Re: Sitting & standing toerance

Post by polarbear »

Hi Violet,

It sounds like you have had a successful surgery for your pn. When did you have the surgery, type of surgery, surgeon etc.
I was diagnosed with pne in 2008, however had since 2000, when I had a rigid sigmoid scope a d the doctor hit my tailbone. In 2002 had my coccyx removed and I got substantially worse. I had pne all along according to the last to surgeons I saw.

Gail
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