Health Organization for Pudendal Education

Finally took a picture of 'my cushion.' I don't know about the rest of you, but our closet looks like a graveyard of cushions, parts, pieces, failed attempts, some very special use adaptations (like a cushioned toilet seat, with a foam elevator strapped with velcro I used for first flight to Houston-- sorry no picture). Dr Renney said, "is THAT what you use?" At that time I had only heard of pudendal nerve injuries 2 weeks earlier. "Necessity is the mother of invention."
I even bought the inflatable $9.99 cushion from Brookstone for when I could go to the pool with the kids, and use it to sit on the plastic chairs.

So anyway, this one below started as a typical Brookstone cushion with the coccyx cut out, but there was not enough support to mimic the beloved toilet seat, as my weight would just smoosh the foam right down on the surface-- and no 'float.' So, in the closet of failures was the $15 botched Marvel 'cushion', way too hard for this tush, more like compacted styrofoam that florists use. My wife suggested putting the Marvel on the bottom for support and sewing it in underneath the Brookstone foam to gain elevation. The plush Brookstone cover had to go, because it did not allow the perineum to float. I had to adjust the Marvel base to stay in the right place under the cushion, which was a pain, but the flexibility of adjustment was worth it.

It is a pitiful sight, but it worked for me. I sat on it with upside down U shaped, so the 'wings' face backward (as pictured) and can be adjusted closer or farther apart depending upon clothing, what kind of day it is, etc. to mimic the toilet seat effect. I carried it with me in a black book bag: in the car, on the chair at work and even to the hospital to sit in chairs while documenting charts, etc. When I was doing really well in 2009, it felt best with the back wings pushed together, and just an ellipse of opening in the middle, and cushion on the ischial tuberosities. Ah, the good ol' days...

When I made a 'backup' cushion (one gets a little paranoid about what ifs, with only one cushion, no back-ups), I left the black fabric in its original shape, but I was sure I would have to cut and sew again, so I can adjust those wings more easily... that is, if I EVER CAN SIT AGAIN




The pool noodles sound like a great idea as well; our kids have them already, just need a trial run to test elevation, support, comfort, adjustability.

Even the process of sitting down or getting up from the toilet seat is often zapping my nerve this go-around, so I haven't taken the risk of a major flareup yet and getting 'back in the saddle.'

If it helps one person, then it was worth posting. Thanks to everyone who has posted their ideas. Not all of us should have to re-invent the wheel, so to speak; but our individual anatomy must be taken into account.

Don

Great information!! Thank you for posting what has worked for you. I've just recently found the "boppy" cusion (used by nursing moms). I was actually able to sit for 20 minutes in a restaurant with my friends and eat a meal this Saturday!! It's the little things that bring joy.

This reminds me of what I used on my flight to see Dr. Weiss and in the rental car once I got there: I bought one of those cheap bright orange life jackets and cut open the material covering the flotation foam. The foam was actually in thin layers that had to be duct taped together (can't live without the duct tape), but the end result looked much like your pillow without the cover, and it was small enough to fit into a carry-on bag.

As I have posted elsewhere, my affection for the Airgo Active seat cushion from Amazon has turned into true love as the months have passed. Can't imagine how I ever did without it.

HI Everyone,
This post is directed to "drdsd89" (Don) who posted above the pics of the Brookstone cushion adaptation that works for him.
Thx so much for posting this Don! You may help many folks!
Im so glad this invention of yours allowed you to sit when needed, with less pain.

Just a quick question.
I noted your "Before" pic -- what the original Brookstone cushion looked like when you bought it.
The "after" pic is obviously how you cut it for your needs... right?
A silly question but just wanted to make sure.

I looked at Brookstone's website ... I found a coccyx cushion which looks pretty much like your "before" pic.

This may work well for me, as my pain is in the anal opening (both sides) and the area just outside the opening. My anal muscles are stuck in" spasm".. Years of worry and constant research about various pelvic pain issues I've had.. more than likely brought on the spasm, and the resulting throbbing pain.. (long story!!)

Anyway, I have been trying to buy and or construct a cushion that keeps the anal area from 'touching' the seat.
I have a cushion "graveyard" as well,( some that worked well when my sit pain was much milder,etc., and some that were useless.
My hubby uses one at work , as well as one in his recliner, for comfort.

I too bought the 'Marvel' cushion last month and was very disappointed at how flimsy it was (like styrofoam). I was about to return it when I
saw your post.

I use various cushion "adaptations" to drive. None work well and leave me with bad after pain, so I only drive about once a week or less.
I am a busy Mom of 3 teen and college age kids. So I need to drive at times, but also just to get out and distract myself from the pain.
The distraction is helpful.
I have a great PT whose good work is the reason I can now drive and dine out etc,but I still have a ways to go before my severe pain is gone or sufficiently lessened.

Don... your cushion idea looks promising.
I have a cheaper "Tush Cush" that I use in restaurants, with the opening in the back. I put an inflated bubble cushion underneath and kneel on it.
I manage to dine out fairly comfortably this way, (as long as I have a "watered down" glass of wine) which relaxes my muscles!

The Brookstone cushion is similar in design but seems like much better quality than my Tush Cush, so hopefully it will work even better when dining out. I am about to order it but just wanted to check in with you before doing so..Hope you happen to see this..
My PT tells me that getting the right cushion for driving is tough because of the "bucket seats' most cars have.

Either way, thanks for posting and giving us all what worked for you. Hope you are doing well!

I found a really great self inflating cushion called hummingbird (google it) designed for back packers. Rolls up super small and can be carried in a large pocket or in a purse. U shaped and air distributes weight nicely. Very sturdy and costs $32. I bought 4 of these in case they quit making them. For airplanes, restaurants, and movies I duct taped one to top of $100 16 inch square Roho cushion and put the whole thing in a 20 inch square pillow cover. Gorilla brand duct tape lasts forever. Carry the whole thing in a large Timbuktu 2 Messenger bag designed to carry 17inch laptop. Air distributes weight the best.

Hi Donstore,
Thanks so much for the suggestion and directions on how to construct it. I'm So glad its working out for you!
I like the idea of the "U" shape of the Hummingbird" as it would allow my painful area to be suspended.
I will check it out!
I also have 2 Roho cushions, but I think both of mine are different models, than the one you have.
My first one has the opening at the back and is inflatable. It is aprrox 3-4 inches thick. and pretty wide (i have to measure it for sure)
I've been able to use it in restaurants a couple times lately.
I kneel on it so my butt does not touch directly; (we put elastics around the little fingers in the opening so they don't touch my area.)
I suspect I have a bigger model than yours, as mine would not fit in any of my tote bags. It's way wider than my butt and kind of heavy.
Then we also have one shaped liked a toilet seat.
We taped it around a vinyl soft toilet cover and I use it with another cushion..I needed to use something under it to elevate me more, but the adaptions we tried for the car both haven't worked well.. thus the after- pain whhen I drive.

I think I will check on the model Roho you have...Do you happen to know the model #? If not don't worry, I'm sure the website will show the various models.
I may order the first cushion you mentioned and try it out. It may work best with a Roho like yours, but it's worth trying it with the ones I have first.
Thanks so much for the suggestion! I don't have your pain story in front of me at the moment, Is your pain area similar to mine?

Thanks again Donstore!

Hi Donstore,
I found that I do have a similar sized Roho rectangular cushion like you have. I hadn't used it for some-time, and has forgotten I still had it!
It sounds like the dimensions and shape are similar.. So now I can look into your 'Hummingbird' cushion, and see if your combo idea might work for me.
Thx again for posting!