Health Organization for Pudendal Education

Hey guys,

Thanks for the replies, make it stop do you still find that cushion helpful even though it doesnt have a cut out in the middle. Do you think this cushion would be of any help https://www.google.co.uk/search?q=wonde ... u3XIK9M%3A. When did your pudendal pain start make it stop?

Chlo xxx

Hey, wow, look at that one!! I don't think I've seen that cushion before. Yeah, I would probably try that one first even before the one I got - especially if most/all of your pain is near the center. I have myofascial pain all over my butt and pelvic floor, in addition to the pudendal nerve being irritated, so the couple of cushions with cutouts that I've tried actually hurt me a bit more since all along the edge/outline of the cutout would kind of dig into my skin/muscle, but this one looks like it might help me and I would certainly think someone who only has pain in the center areas. And look at how it folds right up. Looks like you could even fit it into a purse. I remember a few years ago when I was using a portable cushion that folded up in half like that (but it was actually much flatter and firmer and so didn't work as well - the "G seat"). It fit perfectly in one section of my handbag and I would tote it everywhere with me - even on dates - and once I got to my seat, I would easily pull it right out and sit on it. Most people didn't even notice (not that I really cared, because again, it's really not something to be ashamed of).

Chlo, my pain started around May of 2011 - so almost 5 years ago. I went to a lot of not so good pelvic PTs before I found a good one. I was really surprised, because you would think if someone is going to go into that type of job it would be because they feel they can really help people and make a difference. But the first several pelvic PTs I went to really were not good. I finally found a pelvic PT a couple of years ago who is good and wants to see people get better, and it still took a couple of years, but I finally see results and even for a short while got down to 0 level pain. I have some other health issues that unfortunately affects my pelvic floor and my ability to tolerate PT, so some of my pain has come back, but even now am about 70% or so better than I was before I started therapy with the good PT. If your pudendal or pelvic pain is due to muscle or connective tissue internal trigger point PT really does work. I mean, before a session and after are like night and day.

Hi Chlo,

Being in the UK like me, could you let me know if you manage to get one of those green cushions that you posted about, i.e. https://www.google.co.uk/search?q=wonde ... u3XIK9M%3A .....I emailed wondergel.com about that very cushion about 6 months ago and they said that they didn't ship to the UK, which was disappointing and, sadly, I couldn't find it elsewhere

Many thanks,

Dusty

Hi guys.

Yea Dusty sure i'll let you know if I manage to get it, I feel so disheartened at the minute, I feel like an 81 year old rather than a 21 year old. I felt like my pain had settled abit and my anxiety has been bad at the minute so I decided to go for a walk to burn off the adrenaline. Well i jogged for about a minute then walked the rest which was about 35 minutes maybe. Later on I had a pain flare up. How come Ive gone backwards were I can't even exercise, were last summer i could have gone for a run and did yoga and didnt get a flare up.

I just feel so frustrated that this is impacting on my life and I can't do something that I really want to do

Thanks
Chlo xxx

Chlo,
Have you seen a pelvic physiotherapist? They might be able to get rid of your pain or reduce it.

Hi Chlo

I just looked at the wondergel.com site again and see that they now say under their FAQ that they do ship abroad, but it means buying through another company via their website - which all seems like a bit of a dog's dinner of a way to go about things, so I don't think I'll be risking buying from their website. This is their FAQ page https://wondergel.com/index.php/faq

Anyway, I've now found that you can get the cushion from the USA via an ebay seller on ebay.co.uk with all the import rigmarole taken care of http://www.ebay.co.uk/itm/WonderGel-Fol ... SwhkRWceO5 ...so I was thinking about buying from them. However, I've just looked at the reviews on amazon.com for the cushion http://www.amazon.com/gp/product/B00SS3 ... _i=desktop .....and was put off by some of the low star reviews, in particular that someone said that it was as hard as sitting on a plain wood seat!

If it were me I wouldn't jog at all - I'd just make a policy of moving and walking around more each day as part of your daily routine, e.g. get off the bus a stop earlier, that kind of thing and only gradually increasing what you do. I do appreciate though that it's hard to get out of the mentality of making a specific time for exercising...but this kind of 'graded exercise' at they call it seems to be working for me, i.e. along with sitting as little as possible - I have a 'day bed' that I lie on in my lounge which I use instead of a chair. As I think that my pain was brought on by using neuro-stulation 'kegel' machine, I live in hope that my nerves are just irritated and will calm down completely eventually. Breathing exercises to calm down my nervous system are also helping me.

However, just to confuse things, I've now just been offered botox as a consultant gynae that I've seen in London says that one of the muscles in my pelvic floor is in constant spasm - He certainly hit the spot (eeooowch!) when he examined me, so he seemed to know what he was talking about. I'm reluctant to try it though as I'm fearful that they might damage nerves with the needling. (I think I would try it if my pain did not go away when I lie down flat to sleep - But as, at present, the pain does disappear when I lie down flat, so if I were to make things worse by opting for the botox and I didn't get any respite at night and couldn't sleep, I'd feel like committing hari kari!)

How long before you finish your uni course? What are your plans for afterwards? - I ask this as I am wondering if you were able to take some time out from having to sit for long stretches in lectures etc...you might perhaps find that things will improve for you.

Dusty

Dusty,

I just wanted to put my opinion out there on two things, since it seems like we both have the same issue causing our pelvic pain (spasmed pelvic floor muscles). First, I was also offered botox (and my insurance was even going to pay for it after I appealed their first decision). After doing a lot of research, however, on others' results, including a Botox thread on this site, I decided to try pelvic floor physiotherapy for a few more months, and I actually have made so much progress that there really isn't anything left to botox. If you find a good pelvic floor physiotherapist, she should be able to release the spasmed muscles. My muscles were so spasmed that I had tight bands that could be strummed like a guitar, and my doctor had thought that no amount of PT could release them, but he was wrong. But if you can't find a good pelvic floor therapist, then botox may be a worthwhile option. I was also afraid of some sort of side effect from the procedure, though, which is why I gave PT another few months first.

Second, about the Wondergel cushion. I am sitting on my Wondergel Extreme right now at Starbucks on a wood chair, and it's definitely nowhere near as hard as this wooden chair! I wonder if that person who had commented that had left their cushion in cold temperatures (maybe in their car overnight),as these cushions are temperature sensitive because of the gel they are made from. These cushions are firm enough to give plenty of support, though. I find that a cushion has to be exactly the precise amount of soft to firm in order to make my pelvis comfortable, but yet be supportive enough to where my muscles don't have to work at all to support my sitting posture. This is about as soft as I can go without my muscles having to kick in. I use the Wondergel Extreme though, which I think may be a thicker version than the model you guys are talking about. Also, again, I've improved from PT, so I am probably not in as much pain as you are. Definitely would recommend the pelvic internal release (and have a significant other come to the appointment to learn how to do it at home on you).

Hi make-it-stop

Thanks for your advice. I'll consider sending for the wondergel extreme...it's just that the shipping and import tax make it an expensive gamble (as being in the UK I can't take advantage of the money back guarantee) but obviously if it does a good job it will be well worth the money...I guess I could always sell it on ebay.co.uk if I don't find the cushion comfortable.

I can't bring myself to go to a PT - Even the ones here in the UK that I've read good reports about regarding their knowledge of and abilities to treat pelvic pain, seem to have just as many bad reports about them as good, so I view it as being a bit of costly (circa £160 a session) minefield. Also, I've had bad experiences of PTs treating my fibromyalgia (chronic wide-spread muscle pain). Instead of improving things at all they just made the pain a whole lot worse (temporarily, but, nevertheless, on a couple of occasions for many months) which puts me off. Even though they claimed to understand fibromyalgia, the PTs I had the misfortune to encounter really didn't understand the condition at all ....Hence my considering going down the botox route, but I'm not sure that I can consent to that either, not unless my pelvic pain starts to affect me at night as well as during the day. If only I had a crystal ball...

Kind wishes

Dusty

Dusty,

I think most people would agree that Botox isn't as conservative a treatment as PT (internal pelvic floor muscle release). But you say you have to spend your own personal money, rather than the NHS/the medical system covering the sessions? That would be a difficult decision to make. If you know that your cause of pudendal pain is pelvic muscle spasm, you may want to just release the muscles yourself. If you could just make it to one or two sessions and have the PT teach you with a therawand, you could do at-home treatment (though I have to admit, I don't feel I do as good a job as my PT does).

Are you sure there are no pelvic physiotherapists where your sessions would be covered? Well, anyway, if the pain is keeping you from important life activities, I think it would be worth it to try the botox if you can't get physiotherapy.

Lots of luck, and I hope the seat cushion helps. I actually also have muscle pain in my entire glute and piriformis area, and though it's not perfect, it's definitely the best cushion I've found out of about 10 that I've had before. I hope it helps you too. Yeah, if it doesn't, either sell it on ebay, or maybe another person on this forum from London might want to try it/buy it.

Hi make-it-stop,

I haven't heard that any PTs do internal pelvic floor muscle release on the NHS. And even if they do, on the NHS it's always a 'postcode lottery' as to whether the treatment is available to you in your area, i.e. it all depends on what individual health authority you're under and where you live in the country. (You can these days choose what hospital and consultant you see, but once you've been referred it's difficult to get referred elsewhere should they not be willing to send you to a suitable PT or other therapist.)

I'm wondering whether a therawand would be a good idea for someone like me who is 8 years post menopause with vaginal atrophy; the lining of my vagina has bled slightly in the past due to it having thinned. I guess I can only but ask if I were to see a PT who does internal pelvic floor muscle release privately.

The wondergel extreme cushion sounds like it might be good for my other aches and pains too - my buttocks generally ache due to my fibromyalgia and I've had intermittent coccyx pain for many years, i.e. before my genital pain started.

Thanks again, for your help, advice and kind wishes.

Warmest regards,

Dusty