Health Organization for Pudendal Education

Does anyone have any issues standing for the entire work day? I was lucky enough to get a sit/stand workstation setup at work so I can stand all day. Now before my condition started to rapidly deteriorate I could stand all day with pretty much no problems. Over the last eight months I find it very hard to make it through a few hours nevermind the complete work day! I feel all the muscles in my butt and back of the legs are tight, I get hot flashes down both legs and my feet feel warm and get sore very quickly. Anybody experience anything like this?

PaulSa,

Standing has become increasingly difficult for me, too. I feel the pain mostly in my sacrum. Have you thought about scaling down your hours at work? Would they let you work part-time?

I too stand all day. Luckily I work in the Operations side of the house and they built me some boxes to adjust my workstation. I've been standing like this for just over a year now. Oddly I only had vulva and perineum pain until last October. Since then the buttocks pain has taken over. My PT says that while she understands the need for me to stand all day that is probably what is causing the pelvic floor to be in such a constant state of spasm. For those with a weak pelvic floor, the standing only makes matter worse. The muscles get so tight trying to hold everything up that they just start spasming.

I did just buy an anti-gravity chair that I've used during my lunch break this week (when I get one). It gives me a little bit of relief during the day to just get off my feet. My boss and I have talked about filing an ADA request for a laptop so that I can work from my chair. It's a thought. I also try to find ways to walk around more so that I'm not constantly standing in one spot. But still very difficult. Anymore I've been taking one day a week off because I just can't seem to make it through an entire week; and if I do I spend every evening asleep before 6pm and knocked out most of the weekend.

I've thought about taking a leave of absence; I even have short term disability that I pay for, but I hate to give in to this horrible monster. And yet I can't help but wonder if I'm not doing more harm than good. Ah well, it's Friday, only 7 1/2 more hours to go.

Tracy

Lernica wrote:PaulSa,

Standing has become increasingly difficult for me, too. I feel the pain mostly in my sacrum. Have you thought about scaling down your hours at work? Would they let you work part-time?

Part-time is really not an option at this point for me. I feel this is rapidly taking over my life and I want to fight it as long as I can. I currently work from home one day a week so I can see my physiotherapist. I'm going check with the big guy to see if two will be a problem.

On another note, I leave for Vancouver on business for a week on Sunday and dreading the 5hr flight and finding a place to stand…..

TracyB7777 wrote:I too stand all day. Luckily I work in the Operations side of the house and they built me some boxes to adjust my workstation. I've been standing like this for just over a year now. Oddly I only had vulva and perineum pain until last October. Since then the buttocks pain has taken over. My PT says that while she understands the need for me to stand all day that is probably what is causing the pelvic floor to be in such a constant state of spasm. For those with a weak pelvic floor, the standing only makes matter worse. The muscles get so tight trying to hold everything up that they just start spasming.

I did just buy an anti-gravity chair that I've used during my lunch break this week (when I get one). It gives me a little bit of relief during the day to just get off my feet. My boss and I have talked about filing an ADA request for a laptop so that I can work from my chair. It's a thought. I also try to find ways to walk around more so that I'm not constantly standing in one spot. But still very difficult. Anymore I've been taking one day a week off because I just can't seem to make it through an entire week; and if I do I spend every evening asleep before 6pm and knocked out most of the weekend.

I've thought about taking a leave of absence; I even have short term disability that I pay for, but I hate to give in to this horrible monster. And yet I can't help but wonder if I'm not doing more harm than good. Ah well, it's Friday, only 7 1/2 more hours to go.

Tracy

Sounds like we’re living the same life! The burning in my butt checks has intensified and is now spreading between my legs, and to think I was stagnant for 3 years. Anyways my physiotherapist is in the same frame of mind as yours, I told her I can't sit and now I can't stand either. So what I'm I to do?

I’m pretty much useless when I get home from work as the pain is that bad also made worse by my 1-1.5hr drive home. We have a 2.5yr old and a 9 month old so my wife is doing triple duty. I see work around the house needs to be done and it kills me that I can’t do it as fast and efficient as I used to. Sorry to vent but this whole thing sucks.

I stood almost all day long for the first 3 months after my PN symptoms began, but began to have horrible feet pain (aching and burning). I now (over a year later) have extremely tight muscles all over my body especially from my butt to my feet. I feel like it has just spiraled. I now can no longer stand in one position for very long and that's with high quality shoes or orthotics. I'm a nurse, but had to go to only working about 4-8 hours a week (even that kills me!). I really think standing all the time caused me to get symptoms like plantar fasciitis. Standing all day isn't good for anyone whether they have PN or not. It puts a ton of pressure/weight on your feet which were not designed for that. Is there any way you can get a couch or kneeling chair in your office. Just be careful because you will have more problems than just PN, like I do now.

When I stand , I have more tightness in the rectum. I can lay on my stomach or back and get some relief. My doctor diagnosed this condition as Levator Ani Syndrome in 1994. I have seen several physical therapists and taken several different kind of medications. The last PT I seen said I had PNE , since the physical therapy did not work. I agree with the physical therapist, I think that the Levator Spasms are caused by pudendal nerve entrapment. I still haven't made my mind up on which PNE doctor to see.

If You are now experiencing tight/painful buttock(s) the piriformis muscle may be involved, it runs under the gluteus maximus from sacrum to hip, so it's fairly deep . The sciatic nerve travels next to it at the sciatic notch, so the muscle can then irritate that nerve if tight or spasmed.
Pain or hot flashes travelling down the back of the legs will usually be related to this (sciatica). A few people have experienced piriformis syndrome (PS) as a result of PN.
Try some piriformis stretches (You Tube)as they often help. If these stretches are worse/tighter on (most affected) PN side you possibly have developed PS too.
Physio's can massage the muscle and use acupuncture to try and release it, with good results. OR at home try lyimg on your back with a tennis ball under the piriformis and roll on it, backwards and forwards along the muscle .
To help at work try kneeling more often if possible, with a cushion or foam pad. Kneeling chairs can work but don't for me and are actually as bad as sitting, I think because of sacroilliac joint pain tho'.
Can standing all day have an affect on viens too or is that on old wives tale? Guess you would also SEE that problem.
My favourite position, when not lying down, is leaning forward on something, standing/kneeling, for extra support but I don't think that 'chair' has been invented yet so I bought some millenial crutches http://www.overstock.com/Health-Beauty/ ... cid=133635. Couldn't use them all day but they do releave the pressure on the pelvis when standing, and my hands are free to 'work'. I use them mainly in the kitchen as I don't work anymore.
Hope any/some of ths helps. . . .oh yes my favourite tip for footwear is FITFLOPS, I can NOT be without them. http://www.fitflop.com/?gclid=CJ7qioKc7 ... 4QodKS15Bw There are no 'smart' shoes but have boots, and 'clogs' etc as well as sandals. My feet, especially heels get so painful because of sciatica and these 'cushion' better than any insole or other shoe out there.
There are a fair few good gel insoles for shoes too but personally I would beg borrow or steal a pair of fitflops.
Take care,