Health Organization for Pudendal Education

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

Hi Gail,
Welcome to HOPE! I'm glad you found us!
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

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

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.

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!

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.

hi Helen, don't be intimidated by medical terminology it is a fancy way of saying coccyx pain, aka tailbone pain

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

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

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