Health Organization for Pudendal Education

Hi, I have tried the valley cushion which is good but I also have piriformis syndrome and sciatica and i think it puts a lot of pressure on that. Is there anything out there better than a valley cushion? Is there a chair that my work can buy me on a trial basis? The carmichael throne cannot be tried on a trial basis so work will not buy it for me. I have not found any office chairs comfortable with my cushion on they all seem so rock hard on my ischial tuberosities and piriformis. I cannot sit on hard chairs. The only way I can sit is on a soft soft with the valley cushion on top, therefore all soft but with no pressure on the perineal area as it has two chambers either side and a valley in teh middle. I really need an office chair that is soft enough but typist chairs are all relaly hard even with memory foam added. Executive chairs are great the leather cushiony ones but they won';t let me use that for an office because they said it will not support the back so I am really stuck. I am going to lose my job. I have tried a standing desk and it is crippling me with leg pain! I am feeling suicidal over all of this. I have severe bladder issues after sitting down and no amount of urination will help the sensation along with PGAD. Only standing up all day or lying releives it (but only after several days of lying and standing) and if I sit down at work the pain comes back. However I can sit down ont eh sofa with my valley cushion for quite a while. please help! I live in the UK but if any cushion or chair can be trialled then I will try it! Thanks Melanie

I have both the Hara Chair and the CT ( Carmicheal Throne) both were / are helpful . Both similar priced .
Hara Chair is softer than the CT- as that seems an issue for you - But It's doesn't really support the back very well- I have sacral/ tail bone and immediate back of legs up by the Butt pain- I had the PGAD and Inner pain prior to my Tarlov surgery thankfully that went away the day of surgery and hasn't returned .Comparing the chairs -
there is still 2 piece of the Hara Chair - now 4 yrs old- that I never figured out where they fit! Hara was at first softer then changed to the foam bottoming out - The CT has not -It was firm at first but and got softer as Ive used it its held its form .




CT is made in US , getting it and putting together was a breeze. You would have to talk with them re: UK . I know - I tried the chair ish - as in the drum stool - very similar on a trip to NYC as that was the closest chair to me. That gave me enough idea- coupled with my PT's opinion looking at the measurements and info - For me to pull the trigger and ask the state disability people to buy it for me.

The Hara chair was a pain to get and ship here as at the time came from China. There might be better sources in Europe ? you certainly have better options there getting like the VARIER chairs- Bigger bucks but for certain types of ON patients I can see that being ideal . All you would need is a Computer monitor / arm deal with a zero gravity type chair. Or like side table to hold laptop -with a wireless keyboard those are cheap. I have too much sacral pain to be placing all my weight/pressure on the lower back.

For work - By far the Carmichael has been Ideal for me. it works great in a sit- stand alternating workstation which I think is a MUST for us, I can go between sitting and standing just be straightening my legs - It rollls great between work desks /areas . When I get the money I will get the drum stool itself for playing piano- Thats the only drawback of the model I have, it doesnt fit under a regular Piano. The other models might- I purposely bought the one that I could swiftly and easily go back and
between Standing and Sitting. .Its made by a drummer that had PN and comes in a bunch of different styles / Job task type chairs.

Because the Chairs are Handmade in the US the " GaP" can be customized- I have a wide gap at 4 inches . Perfect fit- Supports my body weight at the thighs with no pressure points on back of butt . Plus that GAP is a great place to have some Ice on those - I've overdone it but have a deadline days. I have the CT 1900 ( whatever the Drafting task chair is ) For my job- I do music editing, proofreading , composition, music prep etc, Having the Foot rest has also been very helpful and any body movement therapist would say that the foot rest is important for anyone.

The owner is great, very educated about PN and easy to talk with Because he " Gets' It! You can tell he has done a lot of body mechanics research / education while developing the designs. Plus the Cost was very affordable - Like all " new Surfaces- for for us PNers. I suggest really being very mindful of any new chair and extended sitting at first - The CT is firm which - frankly after how many cushions?? both bought and handmade attempts - I find a good match and within a few months the foam starts bottoming out - I know you all know what I mean! the CT felt pretty firm at first but it wore in quick and held at a great feel now-
I knew that It would "" feel " firmer than the cushions I've used to because I sat in one for an hour on a trip last summer.

Knowing that , I had my husband sit in the chair for the first few days to " break it in for me" perhaps cheating LOL but - Princess and the Pea syndrome when it comes to Butt pressure. Throwing that out there if anyone gets one and feels its too firm- Have another Butt break it in. But overall- Its a great chair, the best I've been able to have- Not that heavy so would transport better than most offie type chairs- I am planning on taking it with me to a week long conference in NY in June.
WITH BOTH CHAIRS AND CUShIONS I think its not a one size fits all-

And REALLY DEPENDS ON WHAT YOUR PERSONAL PAIN TRIGGERS ARE:
AND KNOW that Most chairs and Cushions can be taken apart and re- Done with Extra foam or cut outs as needed to suit your needs.
We all have different areas that are the most painful and disturbing. No chair or cushion is going to do all the work - we have to be very on top of it and make our own recovery happen , first by understand the condition, triggers and Pain relief Tools that work and stay proactive on all fronts. Hard to do in severe pain , but with a goal and baby steps it ca be done . Personally I have to set a timer and stick to it , now that I can sit. I have to know and STOP before my threshold is reached. VERY HARD TO DO . oTHERWISE I am moving backwards and rewiring the Faulty " pain !! red Alert !! " alarm system . I went from not a minute of sitting to easeful sitting at around 75 mins then need to get up and do something standing or moving and go back to sitting later . That took 5 years of very handwork and discipline .

I Also wonder after re reading your post a few times , I see you are in the UK
Where your local What we have here as ADA ( American's with disabilities Act ) is in all this ?

Your employer should be required to help you find reasonable Accomidations , Whatever those might be.
I had to sign up with state disability office and jump through a billion hoops but was able to get some help that way.
There are also many Disability type org grants that can help.

I would Also be tempted to contact CT and ask if a chair- type you both agree would be the most suitable.
and See If say some big pelvic pain clinic or so can get a demo chair sent there for your country . That way you can try the chair for a while .

I do get by the time we have PN, just keeping your job is a major stressor.
But , As it was explained to me .....I am self employed so kind hosed in any respect for the longest time till I got with the state Disability board -
But people with regular jobs ,,, and now injured , the company should have no issue with --- ordering a $400 chair to keep an employee .
That is so much cheaper than paying disabilty and losing a good worker . If your arms was blown off they would accomadate that injury with whatever gear you needed to Voice run a computer and thats !! like expensive. Seems like us with sitting disabilities need to become way more vocal and political involved in making A sitting disability the same as any other,

Anyways don't know the laws there, and no even the act of finding all that stuff is a struggle if you can not sit at a computer!!

Hope the review helps . I've attached another Docx I wrote for my Dr. With links to other options .

Links for the Chairs are: http://backpainchairdirect.com/ or https://www.facebook.com/Carmichaelthrone?fref=ts

I made this list for my Dr-
Hope it helps and the pictures Aren't going through !!

I will try and get the post up w/ pics links tomorrow Or maybe someone with computer skills can-
I can email you the PDF it has the Pics attached to each product


Helpful Products Infared Machine $30
http://www.amazon.com/Infrared-Massager ... B000KVNQ00
Bulbs 6 pack
http://www.amazon.com/gp/product/B00MFT ... UTF8&psc=1
Helpful Products for Pudendal/Pelvic Nerve Pain
Commandos ***Great Patches that reduce the need to wear underwear if that is a pain trigger http://www.gocommandos.com/products.html
Extended hours Ice Packs
Portable Heating Pads- Different Sizes approx 8 hrs of heat ***Therma- Care http://www.thermacare.com
Creams
Neogyn Vulvar Soothing Cream $50 plus expensive not covered by insurance http://www.amazon.com/Neogyn-15ml-Vulva ... ref=sr_1_1? ie=UTF8&qid=1425343125&sr=8-1&keywords=neogyn
***Lidocaine 5% Gel in Hypo Bases- ( Lipoderm, Cell Gel, Emu Oil) must be compounded
***Lidoderm Patches Insurance covered- now in Generic ***Slippery Stuff Personal Lubricant $7

Chairs and cushions for Sitting Pain ***Carmicheal Thrones $380-650. more models
http://carmichaelthrone.com
Company owner had disabling sitting pain ,why they were made- He gets it. Seat tops custom and handmade in US width of “ gap “ can be customized
Many Models available . Owner is very easy to talk to and can hep you figure out what type chair and “Gap” suits your work and sitting needs best.
Contact : Dan Carmicheal
Dan Carmichael (770) 639-93134

Stance chair $400-700
https://healthpostures.com/products/com ... gle-chair/ http://www.modernchair.com/health-postu ... chair.html
Zero Gravity Chair
http://www.relaxtheback.com/zero-gravity.html

Ergoquest http://www.ergoquest.com Workstation and chair combos sells much more expensive zero gravity chair/electronically-controlled desk
combinations.
Specaility workstations, Over Bed workstations, Sit stand workstation ects $2500 - $15,000

Hara Chair
The price is the same for all the models, $399 and up +S&H(Around $60-70 except HI, AK).
http://www.harachair.co.kr/flash/pr/pr_dt.swf
D.J. Lee General Manager Happyness, Inc C. 213-434-8828 Chino Hills, CA 91709 www.banthing.com

EasyChair Workstation Under $500
http://easychairworkstation.com
Is Using your computer a Pain?
A perfect solution for people who can not sit at a traditional work station for any length of time because of a Physical Condition or Disability. If you are able to sit in a recliner you can now use you computer again! Your recliner is comfortable because it fully supports your body. Your arms fall naturally to the arm rests and are fully supported as you use your mouse. The very Definition of Ergonomics!
Many of our customers are using The EasyChair WorkStationTM because it helps them overcome the physical discomfort of using a traditional workstation. It can even be used beside an adjustable bed (EasyBed WorkStation?). See the ASSITIVE TECHNOLOGY page for more information on how it is helping people.
The Americans with Disabilities Act (or ADA)requires employers to make "reasonable" accommodations for employees with special needs in the workplace. Our workstations can be an extremely economical part of your ADA compliance package. We will be glad to work with your ADA compliance officer or Occupational Therapist to tailor a program for your companies needs.

Salli $850- 1200
http://www.backdesigns.com/Salli-MultiA ... -P558.aspx

VARIER $650 -1700
many designs top ergnomic chairs
http://www.varierfurniture.com/en_us/Movement-Chairs/

LOTUS WORKSTATION $1400 -$2000 sit stand ergonomic workstation
http://www.focaluprightfurniture.com/th ... rkstation/
Google Ergonomics Sit Stand Work stations for many different options
Relax the Back Various Products
http://www.relaxtheback.com/pain-relief-center.html

Cushions
** always look around online for best price and look for return policy
weblinks given are just suggested places for ease not necessarily best price or refund policy http://tailbonedoctor.com/faqs/pick-a-tailbone-cushion. www.ichelp.org and www.pudendalhope.org reviews from fellow patients
Contour Kabooti Pillow $30 Bed Bath and Beyond
The Wedge-Ease seat $90 cushion has a three-to-one wedge bottom and coccyx cutout designed to provide excellent back support. Can custom cut out area needed , 4
different colors http://www.relaxtheback.com/seat-cushio ... edge-ease- seat-cushion.html
Orthopedic Molded Memory Foam Coccyx Cushion
http://www.amazon.com/Orthopedic-Molded ... B007QT9QAS

McCarty's Sacro-ease Executive Rx T" cushion ($150 -200)
http://www.thebetterbackstore.net/McCarty_s_Sacro- Ease_Executive_RX_Seat_Cushion.html
Wonder Gel Cushion. $33-over $100 Fold and go , Roll and Go , double ect www.wondergel.com
something you will really enjoy . It would also adapt quite well to being cut out in the middle if this would help in ones particular situation. It's durable well-designed.

Waffle Cushion $30-90 http://www.ehob.com/store/detail.html?prod_id=278
ROHO CUSHIONS   $200-700 sometimes covered by insurnace
http://www.spinlife.com https://roho.com http://www.amazon.com/Roho-Cushion-remo ... at+cushion
WEDGE CUSHION $35-50http://www.allegromedical.com/cushions-covers- backs-c544/coccyx-cushion-p191796.htm

CUSHION YOUR ASSETS ( $95) 30 day return policy
http://www.cushionyourassets.com/
adjustable , very portable- varying firmness ,made by Pudendal patient Twin Cheeks cushion - two thickness 's
Pampered Fanny cushion
he Pampered Fanny cushion is offered in three different firmness levels with a pear shape or circular hidden cutout in the center of the cushion. This cushion also comes with an adjustable, removable shoulder strap.

Warm Water Therapy Pools
Many communities have warm water therapy pools-
If you get a Water PT Rx from your Doctor it is often covered by insurance .
• some require that a certified Pysical therapist be present.
If you just want to use the pool yourself you often can , but it would be out of pocket.
Do note *** female pudendal, IC, vulvodnia, PGAD and Lichen Scherlosis patients often CAN NOT tolerate the chlorine used in most therapy pools.
If you can find a salt water, silver treated, or alternative to chlorine treated therapy pool, please go there and let your local Womens health / Pelvic floor therapist know of the place you found , they are hard to come by and very much needed . American Physical Therapy Association; Women's Health:
Tel: (800) 999-2782 Web Site: www.apta.org

If you can not afford a home therapy pool, nor find a salt water therapy pool. This product can make short visits to a chlorinated pool possible.
First , Use 5% Lidocaine cream/gel in whatever base you can tolerate ,then place Alba Un-petroleum Jelly over your vulvar skin.
Make sure to rinse off well immediately after being in the pool, and never sit in a wet bathing suit for any time period.
Alba Botanica Un-Petroleum Multi-Purpose Jelly $7 Amazon / drugstores

Home Warm Water Therapy Pools
http://www.therapypools4less.com/ this one is under $1500 w/ accessory and pump ect
http://www.activeforever.com/ipool-abov ... -by-fitmax? gclid=COy6o6yVicQCFYNsfgodKDoAbA $1200
Endless Pool http://www.endlesspools.com
Hudson Aquatics
http://www.hudsonaquatic.com/human-solu ... fgodjq8ABg



I've got to cosign with yoland on the Stance chair. I got mine from wayfair for cheaper than the health postures site. Anyway, I just made a post with details on what I’ve been using with pics of my set up; check it out for more details. In summary, I use the stance move chair and a varidesk riser. It’s changed my life; I’m finally comfortable and productive at work again. PS- my coworkers tried out my chair and love it; none of them have PN, but now they all want the same setup for back pain, weight loss, etc.

The best cushions for me are the togu airgo cushion (for driving, eating out, sitting for a drink with friends, etc) because it works well and it’s foldable so it fits in my purse. It’s very discreet and easy to bring anywhere. It’s german so you’ve got to get it from Amazon UK.

If I’m going to be on an airplane or sitting for hours (went to a wine festival last weekend, for example ) I use a boppy. I also use it on soft surfaces, like if I need to sit up on my couch instead of lean/recline. I cut it open and added extra stuffing to make it firmer – works great. I bought a custom slipcover for it from etsy in a “Aztec print” fabric so it doesn’t look like a baby pillow and isn’t embarrassing to use.

Hope this helps

For anyone who might be interested in getting a Togu Airgo Active Seat Cushion (like this, http://www.amazon.co.uk/Togu-Airgo-Acti ... B000FCQLZQ - which is available on various websites to include both UK and the USA amazon websites) :

I've just tried one; you fill it with air by means of a small pump and I found it to be too 'bouncy' and unstable because of the air in it - a bit like sitting on a couple of rubber hot water bottles...I have had sacro-iliac issues in the past and, although it is good not to have those joints seize up with the pressure of sitting and give them some free movement, I have to be careful...For me there was too much movement and instability to sit on the cushion for any length of time without risking muscle spasm in my sacro-iliac areas. The Togu also didn't relieve much, if any, pressure on my burning vulva (my pn-like pain is pretty central and I think that the central gap/'valley' wasn't wide enough) but I did feel that it gave me adequate pressure relief on my coccyx.

Dusty

Hi Dusty
I just noticed ur post on the Togu Airgo Active cushion, and I m sorry that it was not helpful for you. A good driving cushion is hard to find!

Months later, Im still seeking a good cushion for driving. My PT explains that comfort with driving is hard because of the bucket seats, and because we have to kind of push our painful areas into the seat, while putting our foot on the pedal/or brake.
My pain area is anal and yours in perineal right?
I forget, what are you using currently for driving?
I have a toilet seat shaped wooden circular piece of wood that hubby made for me, (big hole in the middle) I put another cushion over it - I have a Roho cushion shaped like a toilet seat. We strap it to one of those padded toilet seats and place the whole thing over the wooden device he made.
Unfortunately, the wood is soo hard that my body can feel it and tho I can move around and keep my anus mostly free from touching, the hardness of the wood hurts!
Ive also combined the Roho device I described above with a donut like cushion which we cut in half and angle it so my anal area is free. That also isn't too great, and I feel pain..esp after driving...even very short distance to stores that are about a mile or so away.. Just the contact of driving starts the pain.
If you or anyone has any other cushions that make driving less painful with those for anal or peri-anal pain ... could you pls post?
We soo need to drive during this busy season, but I pray without after-pain!
Thanks and Happy Holidays to all!

Thanks Dusty and everyone,

Hi Kathy

My pain runs midline from vagina to clitoris, so it's pretty central. The seat that I leave and use in my car is a Backjoy...I know you said you had one - Have you braved trying yours yet?

I also use a Putnams 'Dr Huff' one like this (which is pretty good for carting around with me) http://putnams.co.uk/collections/pressu ... ff-cut-out ....I take it to sit on in waiting rooms for hospital and doctor appointments; it's a bit bulky, but the up side is that it's lightweight. (They do another version which is shaped for office chairs in which you can get the same 'Dr Huff' cut out http://putnams.co.uk/collections/pressu ... ce-cushion ; Putnams are in the UK, but ship abroad to include the USA.)

I was reading on another thread about the wondergel cushions (another forum member said she uses the wondergel extreme cushion and found it to be good https://wondergel.com/index.php/seat-cu ... shion.html ) and am very interested in getting one, especially the green coloured 'fold-n-go' one https://wondergel.com/index.php/seat-cu ... shion.html which looks so portable.

Season's Greetings to you, Kathy - and to everyone on this forum.

Dusty

Hi Dusty,
Thx for your quick reply and all the info.
About the Backjoy, I have been afraid to try it. Based on the pics of how one is supposed to sit on it, it looks like my painful anus would be touching...
Also it's a hard plastic, which may hurt as well.
From what my Phys. Therapist and I have discussed, it's best for my anal area to have a wide opening so it can hang free, yet I need to be elevated so I don't sink.
I think my problem area is not a typical one , and that's why its been hard to find an ideal cushion.

Thx very much for your links to the 2 other cushions! The Putnam's one from the UK sounds interesting. I wrote them to see which model would be best for me. (since my sit pain began in the sit bones and "moved" to the anal area), Im not sure if the sit bones still hurt--the anal area pain is so intense it demands all my attention.
One reviewer said he uses it to help his "rectum" so maybe this is the best choice!

Also the Wondergel sounds good, but after reading all the reviews it didn't sound like any folks had rectal pain-- tho not sure. I wonder if this cushion can be cut out to have an opening in back? I'll check with them.
Im seeing my phys. therapist today, and will discuss these cushion ideas with her.
Thx again Dusty for the info and I wish you a very Merry Christmas!
Again if anyone uses a cushion that helps with anal throbbing please post!
Happy Holidays to all!

Hi Kathy

Just thought I'd add that I probably won't be ordering a wonder gel cushion after all - as I didn't much like some of the reviews about the 'fold-n-go' one on amazon.com....someone said it was quite hard, like sitting on a wooden seat!

I hope you find a seat/cushion that suits you better soon.

Take care

Dusty

Thanks Dusty,
For the info. I too have many cushions that don't work, so am still looking as well, and meanwhile using what I can.
I mainly need to find a cushion that helps with driving.

I got a post from a nice guy named Don, that detailed a Brookstone upside down horseshoe shaped cushion that worked well for him.
He and his wife attached' -sewed it to the Marvel cushion (which he customized for his own pain issues).
He showed pics.
I can't find the post at moment but its there somewhere.
I wrote to Don asking him to re-post. I think he is feeling better now, and may not be online much..

I am about to return the Marvel cushion which was flimsy and thin ((like styro foam);
but it did work well for Don as a base under his better Brookstone model. He also suggested using 2 Brookstone cushions instead,
But when I checked Brookstone, I can't find the Horseshoe cushion he referred to.. I wonder if they no longer make it. Arrgh!!
Anyway just wondered if anyone knew?
Thx folks.