Health Organization for Pudendal Education

Hi guys and gals

Stopping by to ask opinions on a chair I saw online, it's called a hara chair.
www.harachairusa.com
Looks like it might be of help for those of us that still have some sitting
pain?
I can't find a dealer out here so I haven't tried it, is there anyone who had
their insurance company pay for something like a chair, expensive cushion or
workstation alterations and equipment that would allow us to keep or hold a job.

I was thinking about starting a masters degree in the fall, that will be one
year post op for me. I'm taking an online course to take care of a deficentcy,
but I would need to attend classes thus sit to get my masters. The days of
traveling the world via bus,train,plane to play my instrument for a living just
doesn't seem doable since I came down with the tc blues.

When someone needs a wheelchair or such they get that covered right?

Ideas.? Thanks hope you are all having a nice Christmas

Annette, I know what you mean about leaning on a hip. I find that when I sit
that's what I am doing as well. I can sit, it is just really uncomfortable ,
feels like the pressure on the sit bones transfer up to the sacrum, that fells
broken or bruised? If that makes sense, standing and laying I have no pain in my
sacrum at all, unless its flared , ( I had one at week 6-7)
I know you have tried a lot of stuff out at work, Did you pay for it? And what
setup have you settled with? Also what are you doing about driving? I'm doing
the hip thing there too, doesn't feel safe!! and I can really only drive for
about 20 mins at a time, before I just don't want to sit anymore!! Other than
that, and one side spot of my perineum !!! aghh! I'm doing well. No
return of internal bladder or bowel pain. but I do want to sit!! that's my
greatest wish in the world, to sit with comfort. Thanks for your update, I am
sure your missing MRI will be fine, maybe you can do the nine month one at 8
months and split the diffference. Have a happy new year? Speaking of which ,
Does any one else find a glass of wine does a better job than a pain pill ?
Not that I'm recommending us to become alcoholics , just an observation. I
don't drink, as a general rule, but I had a glass on Christmas eve and was
surprised how well it took away my pain. But I won't be starting drinking as I
wouldn't want to stop. Hah
Hope you all have a fun and safe NY Eve. THis will be the first one I haven't
worked since I was 14. makes me sad , but I will be with friends.
J

The chair looks interesting. I wonder how wide the gap is in the middle. It would have to be pretty wide to keep the pressure off of PN sensitive areas. If you get more info, please share. Thanks.

Emily B.

Emily, from what I can tell the seat part is adjustable so you could make it as wide as needed.

Since my source of pain has always started at my left sit bone, I don't see how this chair would work for me. Dougnuts & cushions I have bought don't work either. I have to have NO PRESSURE on the sit bones.

yoland wrote: I can sit, it is just really uncomfortable ,
feels like the pressure on the sit bones transfer up to the sacrum, that fells
broken or bruised?

yoland, you put into words what I couldn't......thank you. When I'm sitting, any part of my bottom that is touching the seat feels so hard or pressured. If I am driving and can't stop for breaks every 10 mintues, it can feel like my sit bones are going to pierce through my skin! And the pressure from the sit bones "transfer up to my sacrum" that will start feeling like it is torked (sp?) or being twisted. That feeling soon turns into a dull throb. My Roxicodone helps with the sacrum pain and the high dose of Neurontin is helping with the burning (nerve) pain. I just hope that they keep working until I can find a long term solution to my PN issues.

I also do the "hip thing" when I sit, to try to keep pressure of the painful area on the other side.

I helps to hear others are having similar pain location, sitting troubles, etc. I wish that wasn't the case, but it helps me not feel so alone in this PN world.

Robyn

Hi Robyn and Yoland,
I'm a member of the Sit Bone Pain Club, too! It truly is the strangest sensation and cushions don't work well for me, either. This new added joy (not!!!) came into my life after my 2nd series of blocks. I'll never forget the first time I experienced it. I mean, I was never aware of my "sit bones" before. Were you? I had no idea what I was feeling when it first started and found out what "sit bone pain" was from the forum. Now, I don't even remember what it feels like to sit without pain or the awareness of my sit bones. Occasionally, I'll ask my husband when he's sitting if he can feel any bones in his butt and he always replies no. I guess I'm trying to reassure myself that there truly was a time in my life that I didn't feel anything when I sit.

Robyn wrote:When I'm sitting, any part of my bottom that is touching the seat feels so hard or pressured. If I am driving and can't stop for breaks every 10 mintues, it can feel like my sit bones are going to pierce through my skin! And the pressure from the sit bones "transfer up to my sacrum" that will start feeling like it is torked (sp?) or being twisted.

Yes! That's me, too! It feels like I'm sitting on sharp rocks, or that my bones are tearing through my skin! I love the people who don't understand and insist that I'll be much more comfortable if I'll only put more pillows under my butt. Well, you can pile as many pillows as you want UNDER those sharp rocks - all feels the same in the end! The devastating sacrum pain is also exasperated by sitting, accompanied by shooting pain up the woo-hoo and the yoo-hoo.

Robyn wrote:I helps to hear others are having similar pain location, sitting troubles, etc. I wish that wasn't the case, but it helps me not feel so alone in this PN world.

Me, too!
Warm regards,
Karyn

Hi Karyn,

Sorry to hear your a member of the "sit bone club"

Because I rode horses on occasion, I was aware of what and where my sit bones are/where. I never could develop a "good seat" in horse riding speak, cuz I just didn't ride that much. After your in the saddle for a long time, you will unmount and those sit bones will be quite sore, unless you rode allot and had developed good sit bones. Come to think of it, if I had a long drive, I also would be sore in the sit bones area. Nothing like now, but just a little soreness that would walk out with a few step.

Karyn, I too ask my husband the same question and his reply is the same as your husbands. I long to just sit down and feel NOTHING. It's been so long for me that I can't remember what it "didn't" feel like

And the "cushion thing".......there is an old childrens fairy tale about "The Princess & The Pea". You could pile pillows to the moon for me and I will still feel like I am sitting on concrete inside my bottom, with sharp rocks in the center of each buttock.
It's just gotta be the nerve or nerve causing that feeling, don't you think?

Robyn

Hi Robyn!

Robyn wrote:It's just gotta be the nerve or nerve causing that feeling, don't you think?

I really don't know! Like I said, it's the strangest feeling! I remember when it first happened, I jumped up and looked down at where I was sitting - absolutely convinced I was sitting on large, sharp rocks! But of course, there was nothing there! So then I'm grabbing at my butt, thinking I must have something stuck to it, but again ...no.
A couple of weeks ago, I developed that same feeling at the top outside of my thighs. I guess where your legs meet the torso? Upper flanks? My sitting is usually done by precariously balancing on the very end of a chair as to minimize the sitting area. I don't know if I caused more damage by "sitting" that way for so many years or if it's just a PN progression?

Robyn wrote:And the "cushion thing".......there is an old childrens fairy tale about "The Princess & The Pea". You could pile pillows to the moon for me and I will still feel like I am sitting on concrete inside my bottom, with sharp rocks in the center of each buttock.

Yes! I'm familiar with this story! Excellent analogy!
Warmest regards,
Karyn

Hi, Everyone

I tried to look up the Hara chair on its website but it is unavailable. Does anyone know of any other manufacturer of any type of chair that could help? Any amount of sitting is excruciating to me. I had TG surgery in Houston, TX in November 2009 by Dr. Lee Ansell but it only made things worse. Thanks.
Debbie

Hi Debbie,

I remember you well from the old forum! I'm so sorry to hear you are worse.

Are you looking for a workstation type chair or just something for your home? I have no idea if this would work for you but I use something called a HON pagoda rolling stacking chair with arms http://www.bizchair.com/hon-4075ntxx-sp.html with a 16" x 14" roho cushion. I discovered it by accident at work and liked it so I ordered some for at home. My health insurance paid for most of the roho cushion.

Hugs,

Violet

I tried to look up info on the Hara chair but the website was unavailable. Are there any other chairs out there that would help? Thanks, debbie