Health Organization for Pudendal Education

Helen,
Words can't express how unfairly you have been treated. When you have something that is uncommon and hard to fix, it is easier and cheaper to dismiss you rather than try to fix you. All you can do is what you have already done, stay focused and speak up for yourself. Don't let the ignorance and sexism that allows these idiots to dismiss a woman in pain to weaken your resolve. You never had a chance with these guys. They knew what they were going to do before you even walked into the room. Everything they did at your hearing was designed to dismiss you and your claim. Appeal everything. Line up your allies and discount your enemies.

Best Wishes,

Don

Don has the right words.

Helen, I wish you the very best of luck with your GP on Monday. Are you able to have someone with you as support? I can't help but think it could be a good idea.

Hello Helen
Thank you for your pm I have written back but have a problem with sending it freom draft folder ..but hey ho ....do you know what? This post was started by me, and shortly I will go into the Questions I have, that may have been answered already so apologies, and I want to thank all for the kind of kind words I needed, no one let me down ...Thank you so much again all.
I'm confused, have I, along with many other people, been given a name I should counter attack? next question sorry, can you tell my mood has changed? I often pick up peoples emotional probs through their writing, can anyone else? I am furious, I have not had that emotion for years, angry yes.
Helen what is going on? sorry to sound ignorant but actually I am...is this court thing/tribunial real? how did it get to that stage? Yes how right you are, in fact I wrote three hundred words to a member who was asking about Garbepentin? pre gablin/Lyrica as I havr become somewhat of an expert/guinie pig.
I had decided to give something back to our tight knitted community as I have often asked and received good information from you all, again strange I lost the words...I must be doing something wrong!!!.
This whole horrid illness takes up all but one hour of my waking time...I have a friend who has had to deal with the same only she is in a better position as her gp is allowing my totally amazing friend to educate HER.
In my opinion, this friend I mention would still be sitting on the same chair at the same desk saying the same things to her G.P had she not been pro active and spent many hours researching (she doesn't come cheap now) . but no amount of money ( I need a joking smilie) will give her three yrs of her life back. Why i5 didn't dawn on me before I don't know, it just did a couple of days ago...what hard exhausting work we put in to help ourselves and others, and how exhausted we are at doing it, this is so not right. Gp are paid a lotta lotta money....I have seen petitions started on the net, and I also know a man who knows more about the NHS than they do, are we angry enough to support you Helen? yes yes yes. Don't give up and don't give in please.
love little mo xx

Hello Helen
Thank you for your pm I have written back but have a problem with sending it freom draft folder ..but hey ho ....do you know what? This post was started by me, and shortly I will go into the Questions I have, that may have been answered already so apologies, and I want to thank all for the kind of kind words I needed, no one let me down ...Thank you so much again all.
I'm confused, have I, along with many other people, been given a name I should counter attack? next question sorry, can you tell my mood has changed? I often pick up peoples emotional probs through their writing, can anyone else? I am furious, I have not had that emotion for years, angry yes.
Helen what is going on? sorry to sound ignorant but actually I am...is this court thing/tribunial real? how did it get to that stage? Yes how right you are, in fact I wrote three hundred words to a member who was asking about Garbepentin? pre gablin/Lyrica as I havr become somewhat of an expert/guinie pig.
I had decided to give something back to our tight knitted community as I have often asked and received good information from you all, again strange I lost the words...I must be doing something wrong!!!.
This whole horrid illness takes up all but one hour of my waking time...I have a friend who has had to deal with the same only she is in a better position as her gp is allowing my totally amazing friend to educate HER.
In my opinion, this friend I mention would still be sitting on the same chair at the same desk saying the same things to her G.P had she not been pro active and spent many hours researching (she doesn't come cheap now) . but no amount of money ( I need a joking smilie) will give her three yrs of her life back. Why i5 didn't dawn on me before I don't know, it just did a couple of days ago...what hard exhausting work we put in to help ourselves and others, and how exhausted we are at doing it, this is so not right. Gp are paid a lotta lotta money....I have seen petitions started on the net, and I also know a man who knows more about the NHS than they do, are we angry enough to support you Helen? yes yes yes. Don't give up and don't give in please.
love little mo xx

Oh my goodness...my computor is having a bad day, so sorry for the repeats
little mo

Me again, phew!! (we need a phew smilie)
Good luck Helen at your docs on Monday.
Also a very touching gesture Calluna
I am not being flippant here , just wondered if you could put bunk beds in?

xxxx mo

I think there will be a queue at the door if we all come and see my GP!

Seriously though little mo, if I can do anything to help, then I will - just let me know.

Now - your situation!

First, your lost post - this has happened to me several times recently as well, telling me I need to log in before I can post - which I've already done once - and then losing what I've written. I've taken to Control A then Control C before hitting send so that I don't lose my post. Otherwise it involves much hunting through the browser history to retrieve what was written. (And it has just done it to me again - sigh - I shall try again to post this...)

In my case it is probably not unrelated to the fact that our local exchange is a bit decrepit, I think it still runs on clockwork some of the time. Also my internet provider is probably not the best, their contention ratio is rubbish but hey, I'm getting what we pay for... You are not doing anything wrong, and please don't take it personally - this is just due to circumstances, without a doubt.

With regard to your really really really bad day - and having been given a name - I would advise you to try your level best to rise above it. This is just something that happened to you. It was purely an accident. It can't be undone, but your attitude and behaviour from this point onward will demonstrate the truth of the matter. If you behave completely normally, your usual polite, friendly and lovely self - the vast majority of people will respond accordingly. And if they don't - well their opinion is not worth bothering with. Please ignore gossip, especially hearsay gossip - don't let it get to you! - it is just so low of people to indulge in that sort of nastiness.

Now - take the time to give yourself a bit of TLC, be kind to yourself. Did you agree with your GP to take the amitrip back to 50mg for a bit? If so, then that's what you do. Otherwise, stick with what your GP has suggested. And just rest as much as you need to get over this, as you would any other physically and mentally stressful thing.

Please try to move past the anger. Yes, people are unfair, and this whole thing is unfair - but even so.

By the way, did you get the opportunity to ask your GP about CBT with your local psychology service? Please see if you can get this - I have been helped so much by my psychologist, she has made such a difference for me, and I would wish the same for you.

Have only just come across this thread, certain anyone reading it would be really concerned - first at little mo's story, and then at Helen's. Little Mo, first I hope your falls and excessive daytime sleepiness have been solved by tweaking the dosage of your meds to suit you and your bodyweight. What suits one doesn't suit all at the same strength, expect that's why your GP wanted to cut them down. Really hope you're getting some proper rest now and Calluna is right about the CBT, it helps you to cope and see things in a better perspective. Good luck.

Helen, I'm just plain gobsmacked by your treatment at this "tribunal", reads like something out of the Dark Ages!! Don's completely right, they'd made up their minds before you even got in there. Hugs to you for your disgraceful treatment and I'm so glad you've come back fighting - attagirl, bulldog spirit! . Get Dr.G to ask that judge and that doctor to define in writing their definition of a quack so that he can instruct his solicitors, that'll put a rocket up their spineless backsides.

PS. Calluna, a few of us have been getting logged out too on here for several days, seems okay today though.

I'm sure I've seen that bird before somewhere sometime
Hello Birdlife and thank you for your contribution, especially to Helen, the more I thought of the whole situation I was surprised at how angry I got, after all it wasn't me and I wasn't being spoken to like a six year old and I'm sure there must have been some down the nose looks that went with the words...I am, a gentle person like Helen and most probably like 99% of OUR members ( I've been looking for that 1 person for ages) and given what it takes to belittle an already belittled, struggling to keep confidence, pain riddled person, instead of a standing ovation which in my opinion was the least Helen deserved, the best being Pride of Britain/usa award...what Helen got instead and certainly did not deserve (again in my opinion) was a kick in the teeth, tantamount to a slap round the face, which in total adds up to being bullied, .
Did Helen have any idea she was up against this? if yes,....then a braver person than I am ..if no..... what a nasty shock , unwanted undignified uncalled for treatment, but, had Helen not put herself forward for this cause and had Helen chosen not to have told us then you would not have found the neccesity to have said what I will always have up my sleeve from this day on, hope you don't mind me quoting the long way, as well as I feel it can be adapted to suit most quick quirky instantly needed replies, as it is so often when heasding back to base with everything churning away in the brain when suddenly you scream internally and for one whole second hate yourself, the world his wife and the dog after the thought has come and gone leaving you wishing I wish I had said.....(even a bit pleading, even a bigger bit needing to be educated)" Please could you define in writing your definition of a quack " how great the finale, should you just happen to have the pen and paper,Thanks for that Birdlife and please could you tell me what Tp massage is I'll probably kick myself with the answer as I feel I should know it.... many thankslittlemo

little mo wrote:what it takes to belittle an already belittled, struggling to keep confidence, pain riddled person, instead of a standing ovation which in my opinion was the least Helen deserved, the best being Pride of Britain/usa award

100% agree with you there, little mo. Hard to believe those educated men would put her through such an ordeal. Helen says she's over it now and feels sorry for them ~ that makes her a far finer person than me! I'm still smarting from some of my experiences at the National Hospital and that was a couple of years back. Easy to think of pithy remarks when it's too late, isn't it, and I'd likely have been the same, too choked up with pain and anger and emotion to spit it out .

TP massage is short for triggerpoint massage, they know about it in the States but not so much here in the UK (leastways you don't get it on the NHS). Will message you shortly, hope you're getting somewhere with your doctor, your meds, and the hospital.
Take care,