Health Organization for Pudendal Education

I can only speak for my own, male, condition, but here goes:

I started seeing Dr Ruth Jones last September. I was in a dreadful state having not been helped at all by the NHS, and basically left to go out of my mind on Pregabilin. I didn't say I expected to be cured, I just wanted help with how to cope physically with my condition.

After discussion with Ruth I agreed to give her approach a try. I did everything she told me to do, plus read what she told me to read. Sessions were at first once a week, then twice a month, then once a month. Almost from the outset I began to feel better, and several months down the line I had to recognise that I was very substantially better. I started to come off the medication, and I also started to sit for increasingly longer periods without any type of cushion. Six months on I am so much better that I almost don't know myself, so used had I got to being the person in pain who, before, could not even sit to eat his food.

It worked for me.

All the best
Substantially less P_M

Wow, great story, PM! Thanks for sharing.

I'm wondering if PT flared you up at all and also how soon did you start to see improvements. The reason I ask is that people on the forum frequently wonder how long they should try PT if it isn't working or if it seems to be making them worse.

Violet

Thank you from me Chrissy and Painful Man for posting positive comments about Ruth Jones.

I have known about her for a while - only because of this website - but have held back from making an appointment - it is so uplifting to get good reports of someone first rather than taking yet another step into the unknown - think i am going to have to take that step now.

Wishing you well.

Rosemary x

Thank you Violet and Rosemary for your comments and wishes.

I have to say that PT did not cause me a flare up at all, not directly anyway. I always felt better for the PT, and certainly gained in flexibility (bending etc). In the first months, as I felt so much the better after the PT, I probably overdid the sitting (enjoying TV etc) the first couple of days. This then caused me to pull back for a couple of days and reduce sitting, sometimes reach for the cushion with the cut-out. However, I kept pretty strictly to the exercise regime, plus the pain management coaching, and always overcame the flare-ups. Sometimes I was due for the next PT session, and that helped me on to the next stage of relief. After a few months the flare-ups did not occur again.

I believe I am continuing to improve steadily. I am not yet 'normal', as I was before all this started, but compared to where I was I'd call it 80% better. I still do the exercises (and exercise - I found a very good very flat place to walk), and I often interrupt sitting with some of the exercises if I think I've sat for too long. I have regained quality of life again, I can eat, watch a film, chat to people etc without being in a distressed state. I can go out without having to take a cushion (or cushions) with me everywhere. OK, if a restaurant has solid hard chairs I probably won't risk it without having a thin cushion (no cut-out) to hand, but I always give the hard chair a go for a while. Generally, I'm finding I'm beginning to be able to make a return to hard chairs, although I do most of my practising at home.

As I said before, I am not 'normal' again yet, but compared to how I was, so much better, and that without drugs or surgery. It worked for me. What works for somebody else might be something quite different. Ruth Jones assured me that I would be no worse for trying her PT. Well, I just got better and better.

All the best
P_M

Just wanted to update on this. I have been seeing Ruth for around 10 weeks I think and I am this week starting to wean off my meds!!!!!
I travel five hours each way to see her and I can safely say it is worth it.
I have had Physio before with no effect.
I can actually sit without a cushion for some times now and also less urinary issues.
She is so lovely and really puts you at ease.
I am not better by a long stretch but I feel like there is light at the end of the tunnel!

Also I 'lounged' on the sofa for the first time in a year the other day! Only ten mins but still it felt great

Last thing! I posted this because I wanted people to consider PT as it can work so please don't think that surgery is your only option. Many of you may be like me and not have true entrapment even though you fit all the criteria so don't give up hope!!

Hi chrissy
Wonderful to hear such positive things about OR and really glad a d it is helping yourself and others.
I had bilateral TG surgery 4 months ago and about to have my first PT SESSION on Fri in the desperate hope it will ease pain f time to return to work. The PT has verbally told me she has worked with this condition but do you have any tips and advice as I'm paying privately and she costs a fortune, will gladly remortgate my house if it works just hope she c a n help.
I really hope you continue to recover and be pain free

Positive things about PT not OR! Sorry

Yes I would say that the PT needs to work externally as well as internally giving you exercises to improve flexibility so the nerve can slide as it helps it recover.
I am going privately too she charges £130 a session which is an hour long. If you don't know about this Physio you are seeing why not go to Ruth jones as she is an expert in the condition? I saw one Physio for months with no success as I was only worked on internally and was not taught how to help myself during flare ups.