BACK AGAIN, SCARED

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
clo236
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Re: BACK AGAIN, SCARED

Post by clo236 »

Hi Dusty,

So would you think that the bony parts 4 inches would be more suitable for perineal pain. With that T zone would you not perhaps be more likely to sink right into the cushion? Silly question but is the 4 inches cushion very very thick? I dont know what to do because I need a cushion for my lectures but then again I wanted to wait to see if the twin cheeks low profile would be any good. Ive spent so much money on cushions its unbelievable

Thanks,

Chlo xxx
Dusty_in_Hope
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Re: BACK AGAIN, SCARED

Post by Dusty_in_Hope »

Hi Chlo,
So would you think that the bony parts 4 inches would be more suitable for perineal pain.
Well, you don't seem to be getting much - if any - sustained pain relief from the 3" Dr Huff, so I just thought you'd likely get more cushioning from the 4" on the areas where your bottom actually touches the cushion and, the T shape of the 'bony parts' cut out being wider the Dr Huff cut out, might better reduce the pressure on your perineum...You know your body best though, so you're the best judge of what might be suitable for you. I've not tried sitting on a 'bony parts' T shaped cut out myself, so I don't know whether there'd be a tendency to sink in too far with it in the 4" thickness. A slight problem with the 4" thickness though is that it raises you up taller, so, when you sit on higher seats, it might be too high especially if you're short in the leg.

I think all you can do is experiment - trouble is, unfortunately, as you say, it can be a costly matter to do so; which was one of the reasons I mentioned in one of my previous posts about Soula's folio bag cushion idea, as trying to make something bespoke for yourself might work better (and, hopefully, be cheaper).

A cushion though that is apparently actually designed to relieve pressure on the perineum is the Valley cushion (women who have just given birth use them and can apparently hire them at a reasonable cost from some branches of the National ChildbirthTrust https://www.nct.org.uk/branches/harrow/ ... shion-hire) but to buy one is very expensive and they're not small and discreet, although the Valley-SV is supposed to be more portable http://www.valleycushions.co.uk/sale/VA ... roof-Cover (You can hire the ordinary Valley cushion - from the supplier/manufacturer, but it's at a cost of £45 for two weeks! :( http://www.valleycushions.co.uk/hire ) I've never tried one myself, so I can't comment on how affective they are.

Having ordered the Twin Cheeks, perhaps you should wait to see if that helps, i.e. before getting involved in hiring or buying anything else. I hope it'll arrive soon.

Best,

Dusty
clo236
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Re: BACK AGAIN, SCARED

Post by clo236 »

Ahhhhh I feel like screaming, the twin cheeks cushion has arrived and I'm currently sitting on it now, but its making my pain worse like I think it would be great for people who have vaginal pain but as my pain is to the right hand side of my perineum like verging on my bum I feel like it is pressing in to it :(

Like for god sake I just want a comfortable cushion, do you think the 4 inch with the bony t zone cut out would be my next best bet, is the cushion massive, like could I carry it around in a carrier bag? I'm just scared that id sink into it and there would be no protection but hopefully because its 4 inches then that wouldnt happen. That was such a waste of money :(

Sorry for ranting,

Chlo xx
Dusty_in_Hope
Posts: 119
Joined: Sat Jul 11, 2015 2:11 pm

Re: BACK AGAIN, SCARED

Post by Dusty_in_Hope »

Hi Chlo

I'm so sorry to hear about the Twin Cheeks. Can you send it back for a refund? You'd lose on the postage, but better to get some money back. Other than that...and it's just a thought...if you were to post and mention that you believe that your pain is pudendal and, having tried it, you think that the Twin Cheeks you bought might be more suitable for someone with vulvodynia on this vulvodynia forum http://vulvodyniasupport.forumotion.net ... win+cheeks, you never know, you might get someone volunteering to buy it off you. (It is an American site but it has quite a number of UK members and not everyone would want to risk sending for a Twin Cheeks from the States....and, of course, there's always ebay.)

I don't know that I can't say much more than I've already said about the Putnam's 4". (I'm afraid I can't know for sure whether it would suit you - nor whether you'd be likely to tend to sink into the bony parts T shaped cut out in a 4" thick cushion - as I've not tried the bony parts cut out myself...but it is a bigger hole than the Dr Huff cut out that I've got on my 4" cushion, so I guess it's a possibility.)

With regard to how bulky it would be - it seems that it would be just under 2" bigger than the office chair Putnams cushion that you've already got and, of course, 1" thicker. (According to the Putnam's website, the 'office' version that you've got measures 16.75" x 14.5" and the 'non office' version measures 16.73" x 16.14" (42.5 cm x 41cm).)

For portability I've made a carry handle of length of strapping that I bought from market stall for my 4" Putnams; I've sewn one end onto one corner of the cushion cover and the other end onto another corner of the cover, so it forms a loop and I carry it like a bag on my shoulder (as I was finding that it's not that easy to tuck the cushion under my arm and I didn't want to carry it in a shopping bag).

Best,

Dusty
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Violet M
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Re: BACK AGAIN, SCARED

Post by Violet M »

clo236 wrote:Ahhhhh I feel like screaming, the twin cheeks cushion has arrived and I'm currently sitting on it now, but its making my pain worse like I think it would be great for people who have vaginal pain but as my pain is to the right hand side of my perineum like verging on my bum I feel like it is pressing in to it :(
Wish I could suggest a good cushion for you but honestly, before I had PNE surgery, I could not find a cushion that helped much. My pain was worst on one side near the sit bone.

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.
clo236
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Joined: Thu Aug 15, 2013 7:02 pm

Re: BACK AGAIN, SCARED

Post by clo236 »

Hi guys,

Im writing this in pain at the minute but I know that its night time and nerve pain can feel worse. I am beyond frustrated the gp is sending me to a pain consultant and if in 3weeks time she was thinking about switching me from Pregabalin to Gabapentin if the pain was still bad. Can pregabalin wear off or something? I actually dont know why I am in pain maybe ive been overdoing things, so the cushion finally came 4 inches bony zone cut out(or something like that) so I sat on it for about 2 hours last night and went for a 20 minute swim making sure not to do breast stroke this morning.

I also went to yoga on Friday because I was feeling stressed and didnt feel like I was in loads of pain afterwards. I am so annoyed at how limiting this condition can be, I cant even exercise regularly. I mean Im not looking to do weights or squats. Would jogging be a bad idea now?

Im not sure if its even my cushion, but i dont have a choice but to sit if I want to go to uni, even when travelling I now choose to stand on the bus:(

Thanks chlo xxxx
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Violet M
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Re: BACK AGAIN, SCARED

Post by Violet M »

There's not a lot of difference between Pregbalin and gabapentin. Some people find pregbalin more effective. http://www.ncbi.nlm.nih.gov/pubmed/20818832
I have not heard of people becoming tolerant to pregbalin like you would with an opioid.

You could try jogging and see how it goes. I couldn't do anything that involved stretching because the symptoms would flare-up the next day but each person is different and you won't really know if something is a trigger unless you try it.

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.
clo236
Posts: 86
Joined: Thu Aug 15, 2013 7:02 pm

Re: BACK AGAIN, SCARED

Post by clo236 »

Hi guys,

I'm really not having a great time at the minute my pain settled down for a few days but then I went to the gym for 30 mins which was roughly 20 mins of fast walking and 7 minutes of jogging, the next day i am in more pain and obviously bring my cushion with me to sit for 2 hours in uni and am in a lot of pain with that,

I am so upset right now i cant exercise and i am mortified that i have to bring that big cushion around and i dont even get any relief. I thought the cushion was great at the start as I was only sitting for half an hour for dinner and it looked like the right shape.

How am I going to cope with uni if I cant even sit, plus am i going to turn into a fat lump cause i cant exercise :(. I just feel so helpless. Would switching my tablets help, am I doing more damage?

Chlo
xx
stephanies
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Joined: Mon Oct 25, 2010 3:07 am

Re: BACK AGAIN, SCARED

Post by stephanies »

Maybe try just the walking and see if the jogging is the culprit in your pain increase? Maybe you can walk for 40 minutes and get a similar exercise benefit?

Good luck,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
April
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Joined: Fri Jun 19, 2015 9:59 am

Re: BACK AGAIN, SCARED

Post by April »

Clo,

Swimming is another possibility if you stay with strokes that just use kicking (i.e., no strokes that use frog legs). I've done this several times in the past two months---gentle swimming and no frog legs---and I don't think it created a flare for me.

April
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