BACK AGAIN, SCARED

[nyt]

Hi Chloe,

Dropping a pair of keys between your legs may cause more pain if your are hypersensitive to touch but I do not see how it would cause more damage. At my worst I couldn't even wear underwear because it was too painful to have anything even touch my perineum. I had to wear dresses so I had to be very careful on windy/breezy days .

Don't beat yourself up over anything. I believe there is a place for all of us to do mind work such as Cognitive Behavioral Therapy, Meditation, any type of mind/body work as one impacts the other.

Keep the chin up.

[clo236]

Hi Dusty and Nyt,

I agree with you both that mind body work would be beneficial as i think the more tense I get due to anxiety the worse the pain gets, also being around friends seems to perk me up abit and take my mind off the pain. I know some people that have recommended exercise to help and reduce anxiety so I decided to join the gym I only did half an hour: 10 mins of walking/light jogging on treadmill and 20 mins of the cross trainer, I wasnt in any pain during the exercise so I thought I was ok.

I decided to bite the bullet and bring my cushion in to uni with me https://www.google.co.uk/search?q=togu+ ... hRzTwhM%3A this one here, but then later that night after I had done the exercise and the sitting on my cushion during class I had a massive pain flare like I thought I was going to vomit in the shop you know that sort of pain that comes on in a rush . This is what I detest about nerves its such delayed pain, was it the sitting on the cushion or was it the exercise? I mean I used to do yoga and occasionally jog last year and it never increased my pain. I noticed when I was in class the day after that I was still having pain while sitting on that cushion. Do you think its an adequate cushion or could it be making it worse? Im still in alot of pain at the minute

Dusty I took your advice and purchased the Putnams cushion, I think its perfect for keeping at home for my desk chair and when eating meals at home
http://putnams.co.uk/collections/pressu ... ff-cut-out. The only problem is that I find it too big for bringing with me to uni, it wouldnt fit into any of my bags and would be very obvious.

Would anyone have any suggestions of cushions which are smaller and could be put in your bag but also be a good cushion, seems like an impossible question (??7

Thanks Chlo

xxx

[stephanies]

The twin cheeks cushion works well for some people, although it is not small. It does fit in a biggish tote bag though. Also, some people have written in about using those little neck pillows they sell in airports and they are pretty small. I noticed that Bed, Bath, and Beyond sells a lot of different cushions if you can try some out there or look online.

Stephanies

[Dusty_in_Hope]

Hi Chlo,

I ordered one of those Togu cushions and didn't get on with it. To me it felt like I was sitting on a couple of rubber hot water bottles filled with air and I didn't like the way it wobbled about - especially unstable for if you use it on public transport. Quite a number of people on this forum said they find the Togu really comfortable though, but, sadly, I found that the gap narrowed off too much near to the back of the cushion and it put pressure on places I didn't want it to.

They do a Dr Huff cut out on this smaller Putnams cushion http://putnams.co.uk/collections/pressu ... ce-cushion (the choice of cut outs aren't pictured on the webpage, but they are all listed in the drop down menu) - However, I think that it would still be too bulky to be as discreet as you want a portable cushion to be (albeit the cover it comes in does disguise the cut out).

I too was interested in the twin peaks cushion, but decided against sending for it from the USA as I wouldn't be able to send it back easily if it didn't suit (because, as you know, I too am in the UK). The low profile twin cheeks sounded too firm and hard on the thighs for me and I thought that the 'trough' wouldn't be deep enough, but I noticed that the thicker version - which forms a deeper 'trough' - has a choice of medium (to extra firm) foam which I thought might make it more comfortable. Not an easy decision to make; you may have already done this, but if you do a search of past posts on this forum there are a number of comments about the twin peaks cushion.

The 'folio' cushion on Soula's webpage might be an option if you're willing to scout around for a suitable 'envelope' type bag or perhaps do some sewing and make yourself one http://www.pudendalnerve.com.au/2012/11 ... f-you-can/ - It could be doubled over as shown and carried around like a clutch bag tucked under your arm or put in another bag. If you page down to the comments section Soula gives what she feels are the optimum measurements for it, i.e. to someone calling themselves 'MDNB' who was going to try and make one for their niece. (I was going to make one for myself, but I'm ok with my Dr Huff cushion and I use a Backjoy seat/cushion http://www.backjoy.com/sitsmart-posture ... ne#start=1 in my husband's car, which I'm also finding to be good.)

I've sent you another pm.

Best wishes,

Dusty

[clo236]

Hi Dusty,

yea im not too sure about the Togu cushion but the shape of it for me was brilliant for bringing out into public. I bought the Dr Huff smaller one and I still think its a bit big for me to be carrying into university because i cant fit it into any of my bags. When I was in a lot of pain a couple of days ago I decided to buy the low profile twin cheeks cushion just because it can be folded up and does seem like it can be transported about easily. That shows how much pain I was in after spending over £80 pounds for a cushion. Please say a little prayer that it works

I was having such a good pain day today and it was very low, it really picked up my mood. Its scary how much pain can change you, we dont want to be bitter and negative, scared, anxious and depressed,

That was sort of short lived tonight when I was lying length ways on the sofa stretched out and my friend picked up my legs so she could sit underneath them, but it ended up that her side sort of hit my bum if you imagine it. That really annoys me though cause it wasnt even my fault and was too late to stop it now im terrifed of a pain flare. Would that be likely to cause more damage?

Sorry for being irrational, its easier talking to people who know what its like to have this horrible pain condition

Thanks


Chlo xxx

[Dusty_in_Hope]

Hi Chlo

My fingers are firmly crossed that the twin cheeks cushion will be comfortable for you. With regard to the cost - if it isn't comfortable, I'm sure you'd be able to sell it on ebay with no or very little financial loss. In my experience stuff purchased from the States will sell because not everyone is willing to order from other countries. I did bear that in mind when I was thinking of ordering a twin cheeks, but, once I got the Dr Huff cushion and it was good and I'm not bothered about bringing it out in public, I just settled for that. (I am curious to know though whether with the twin cheeks you can leave the adjustable pads in the position that's just right for you, or whether you have to move them each time to be able to fold it up...Perhaps you'd let me know, just in case I change my mind and need a cushion that's more portable.)

With regard to what your friend did possibly causing you damage - I very much doubt it...If you do suffer as a consequence it is more likely to be to do with the area being irritated. (As you know, I'm of the school of thought that my own very real vulva pain has a mind/body root cause and anything that we can do to calm down the nervous system is likely to help, if not cure, the pain, e.g. mindfulness meditation http://www.shinzen.org/Articles/artEmptyMind.htm, stream-of-consiousness journal writing, 3/5 or 7/11 breathing, allowing ourselves to feel our emotions rather than push them down, self-massage, self-soothing techniques like these http://www.new-synapse.com/aps/wordpress/?p=616& and http://www.new-synapse.com/aps/wordpress/?p=207, tai chi, chi gong etc....The 3/5 breathing is my absolute favourite as you can use it any time and anywhere and in any situation, without anyone knowing and it's so calming/soothing.) I also believe that things that pep us up are good for the brain and nervous system too - pleasure being the opposite to pain...In my case I do a bit of 'Mum dancing' in the privacy of my own living room (it's mostly gentle 'movement to music' - with more arm movements than hip/pelvis movements - rather than proper dancing, but even that can be tailored to fast/up-beat tracks to lift the spirits - and I would think that a bit of 'air punching' would serve to get rid of some pent up emotion too).

Best wishes

Dusty

[clo236]

Hey guys,

so I bit the bullet today and brought out my Dr Huff cushion I was so anxious about bringing it out into public with me, but I think I managed to sneak it under my chair without loads of people noticing. I had 4 hrs of classes basically back to back so I knew I needed my cushion which I thought was great at the dinner table for example.

But now that Im home and (this is later on at night bear in mind) I seem to be in more pain. I feel at my wits end, at least if I have to feel embarrased about bringing out a cushion, I would like to think it would work!!!!!!!!!!! I HATE THIS CONDITION it makes you embarrassed, you cant sit, have sex, socialise, uni is going to be a problem now. Like talk about something that makes you depressed and anxious. If the twin cheeks cushion doesnt work when it gets here ive wasted £84 and ive no hope left for a comfortable cushion.

Chlo xxx

[Dusty_in_Hope]

Hi Chlo,

I'm so sorry to hear that the Dr Huff cushion didn't work for you to use at uni. I have never sat for as long as 4 hours on mine - I think 2.5 hours has so for been the most I've used it at 'one sitting' and my tailbone (I suffer with tailbone pain/'coccydynia' as well as vulva pain) was a little bit tender afterwards, but my genitals were okay...I'm not sure what thickness of foam you chose for your Dr Huff, but I've got the 4" thick one (which might have made some difference to my experience, but, of course, it makes it even less discreet than the 3"). Hopefully, yours will still help for at home at the dinner table and at your study desk.

If the twin cheeks isn't good, I still think you'll be able to sell it on ebay and get - if not all of you money back - at least a good proportion of it; it would have to be worth a try, I think...but I obviously realise that that isn't the main thing...it's the pain relief that matters...

I don't know what to suggest other than the things that I've already mentioned in previous postings to try and calm your autonomic nervous system down...Do you use a frozen gel pack or heat pack at all and does it help relieve the pain? If it does perhaps you could use cold or heat as soon as you get home from uni for a little while (I understand that it's especially not recommended to use ice for very long at a time) before any or too much pain sets in?

Best,

Dusty

[clo236]

Hi Dusty,

The Dr Huff one which is available in the office chair version that I have only comes in 3", im so silly I didnt realise the normal square one could come in 4" aswell, maybe that one would have been better. 80% of the time i get pain on the right side of my perineum so would be the ischial tuberosity larger 4" one suit me better?

Its probably the fact that it was 4 hours long but im starting to panic as I need to sit for nearly 4 hours at a time every tuesday thats probably the longest duration, i am in 4 times a week though. I agree with you, i used to use ice when I first damaged the nerve and I was in extreme pain and it worked, as you know the perineum area is such a difficult area for ice to reach at times hahha.

This extra pain when i'm trying my best is really starting to get me down and I was even planning tomorrow of doing some exercise to try and pick up my mood but im a bit scared to.

Sorry for being a pain,,
Chlo
xxx

[Dusty_in_Hope]

Hi Chlo,

i get pain on the right side of my perineum so would be the ischial tuberosity larger 4" one suit me better?

All I can say is that it is difficult for anyone to know but maybe it would. (The Dr Huff probably suits me more than it does you because my pain runs midline between my vagina and my clitoris.)

When I chose the Dr Huff cut out for my cushion what I'd assessed was that if it didn't help me I could cut into the cushion and make the hole into the shape of the Putnam's 'bony parts' (ischial tuberosity) cut out to see if that would work instead. (I assessed that all I'd have to do is to use a sharp carving knife to cut into the cushion and make the hole into more of a kind of T shape, using/comparing the pictures of the two cushions - the Dr Huff and the 'bony parts' - from the Putnam's web site to guide me.) I hesitate to advise you to do this with your current 3" Dr Huff cushion, just in case it ruins it for you for sitting at your dining table/desk, but I guess you could perhaps consider getting another Dr Huff - this time a 4" - and alter it if you need to. (Sadly I can't promise you that that would work for you though - it's just something that I would think about doing if it were me.)

Best,

Dusty