BACK AGAIN, SCARED

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
make-it-stop
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Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: BACK AGAIN, SCARED

Post by make-it-stop »

Chlo,

I made it through my 2 years of grad school (Master's) with this condition; you can do it too. But get this - if you think bringing a cushion to school is embarrassing, you would have died if you did what I did. I actually found a special chair that felt so much better to sit on than the ones they had in the classrooms, so I kept the chair (a heavy, office type chair) at school in the office and pushed the chair from class to class. It was a bit embarrassing at first, not to mention frustrating when my classmates saw me struggle to get the heavy chair up the stairs without offering to lend a hand (seriously, what is wrong with some people?). But the comfort I got from sitting in that chair - boy, did it ever outweigh any negative feelings. It was the aeron chair, btw. Still use it at home and when I work. Seriously, suck it up, and don't be embarrassed. And know that a lot of people on these boards can't sit AT ALL regardless of any type of cushion, so if you have the option of being able to sit with a cushion, you're a lot better off than these poor folks.

BTW, I just discovered the Wondergel cushion a few months ago, and for me at least, it's unreal how amazing it is. I had used the Technogel for a couple years, and thought that was good, but now I think it's rubbish compared to this Wondergel.

What is the cause of your PN? Is it an entrapment or muscle tension?
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
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Violet M
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Re: BACK AGAIN, SCARED

Post by Violet M »

That reminds me of the times I carried a small cot to class and laid down on the cot while I was still recovering from PN. I was determined not to let PN stop me from achieving my goals but now that I look back on it, maybe the cot was a little extreme. :lol:

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: BACK AGAIN, SCARED

Post by make-it-stop »

But I have to say, stuff like that (the cot and to some degree the chair) builds character - Im able to endure greater levels of humility with ease now. Oh, and all of the rectal and vaginal internal physical therapy does that too. :)
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
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Violet M
Posts: 6770
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: BACK AGAIN, SCARED

Post by Violet M »

Totally agree with you on that and I would take the cot again with me if I needed to!

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: BACK AGAIN, SCARED

Post by janetm2 »

Chlo,
One thing you may gain from carrying around the cushion is to find a true friend. Anyone who will stick by you through this and not be embarrassed to be seen with you.
The others would probably not understand unless they were in your shoes and you need to do whatever helps reduce you pain. Hang in there!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: BACK AGAIN, SCARED

Post by make-it-stop »

Well...actually I can't imagine someone avoiding being seen with someone because they have a cushion. I have carried all kinds of huge cushions everywhere, even on all of my dates, and no one cares. If they were embarrassed, it means they have issues that they need to get help for themselves.

But if you, yourself, are embarrassed, there are so many cushions that look like laptops in laptop cases. Everyone always thinks my Wondergel and thought my Technogel were laptops - even TSA at every security line at the airports. Like out of 100 flights over the past few years, Ive been told 100 times, "Miss, laptops need to go in their own bin." And then I get to say (with sorrow in my voice and a tear in my eye ;-), "It's not a laptop; it's a medical device. A seat cushion for my nerve pain." And they say "Oh, so sorry, it really looked like a laptop, I hope you will get better." Me: *sigh* "I hope so too."
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
clo236
Posts: 86
Joined: Thu Aug 15, 2013 7:02 pm

Re: BACK AGAIN, SCARED

Post by clo236 »

Hi guys,

update: so basically I grew a pair a balls and now carry my cushion around with me everywhere, to uni, dinner eating at home. Some people were nosy and wanted to know why I was always carrying a plastic bag and i just said it was for my "back".

Make it stop, wondergel off the website I dont think supply to the UK but i found someone on ebay, what wondergel cushion was it that you used?

My GP was wanting to change my tablets in January to gabapentin, I managed to get the pain back down but I think with sitting and exercise (havent tried any yet too scared) the pain will flare up again
Such a pain in the ass, pardon the pun

Chlo xxx
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: BACK AGAIN, SCARED

Post by make-it-stop »

Chlo,

Good for you for using the cushion! See, it's really not bad. I use the WonderGel Extreme, and I saw it is on the ebay uk site for about the same price I got mine in the US (I got mine for $80, which is like 53 pounds). I like it much better than even my expensive Technogel cushion.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: BACK AGAIN, SCARED

Post by janetm2 »

Chlo,
You go girl! Glad you are able to use the cushion and most folks understand back problems so you can just stick with that. Even when I say what is really wrong they ask how my back is doing. I say whatever works for you is fine. I hope the pills continue to help or the change can make it better. We are the few who can truly say it is a pain in the ass!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: BACK AGAIN, SCARED

Post by make-it-stop »

I forgot to mention. I tried gabapentin for a few months - a heavy dose actually (went up to 3000 mg in a day) - and I felt zero benefit, so I tapered off. I think whether it works depends on a few factors including if it's an entrapped or damaged nerve vs. tense muscle and connective tissue. A tiny dose of methadone worked and continues to work remarkably well for me. But I've also gotten about 80% better (sometimes even a 0 or 1 pain level) from internal trigger point therapy. It took about 6 or 7 PTs until I found one who knew her stuff, and even then, it took a lot of time because there was a learning curve for me in knowing how it's supposed to feel, how to communicate, which muscle should be worked on the most, etc. It's important to find out what is causing the pudendal nerve or pelvic pain, so that you can find the right treatment to do.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
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