The ridiculous tale of trauma, pelvic pain, benefits, the government and more trauma.

[helenlegs11]

I shake my head at the ridiculousness of my life a lot now. I can not believe what is happening and all through a trip and fall onto my bum.

Because this fall (over 3 years ago) happened at work, I was informed by a friend that I could probably apply for an Industrial Injuries (II) benefit, so I did.

It was assessed that I did have an 'industrial injury' even though as an interior designer mine wasn't exactly an 'industrial' environment.

I'd had a medical, where they concentrated on back problems mainly, and because I can touch my toes I was declared 15% disabled due to my fall and was told that my pelvic 'soft tissue' injury, would take about 1 year to settle.

I was awarded £17 per week for a year, for which I was grateful, but by then, I had been made redundant and knew that my (rubbish, 20 years!?) redundancy would see me through until my pelvic problems were better. Not long to go at all.

I knew there was nothing wrong with my back as I'd had a disc problem and successful microdiscectomy 6 years before this, so knew exactly what that pain was like and this was not it!

The trouble was that I wasn't getting any better, the shooting, burning pelvic and aching buttock pain continued without improvement.

A neurosurgeon confirmed, spinal issue? ? although no nerve impingement was seen on my MRI scan, but I had dreadful sciatica?. When I asked what could be seen in my pelvic area on my MRI, I was told that he hadn't ordered a pelvic image, so could not say, and even if he had, that area was outside his area of expertise. I wondered why I had been sent to see him in the first place! Was no one listening to me?

It took a 'lowly' (and fabulous) physio to point me in the right direction of a piriformis muscle problem. At last it all made sense, like the pieces of a jigsaw falling into place.

My physio's word was no match for a neurosurgeons however, but I couldn't believe my luck (which you may note, I had been a bit short on so far) when Dr Filler could see me at his London Clinic.

2 years after my fall, he diagnosed, 'a complex variant of the piriformis syndrome: involving the superior gluteal,pudendal and sciatic nerves' which made perfect sense of my symptoms. At last! : )

I sent this new diagnosis off to the II benefit people and had another medical appointed. I'd sent in other scholarly articles about PS in advance and apologised for not bringing my newer Dr Greenslade (British/ NHS) report confirming Dr Fillers diagnosis but the examining dr.said, not to worry, he had everything needed, now,can you touch your toes?

I was amazed and disappointed 2 weeks later, that they decided not to take any notice of any piriformis or pelvic problems and threw my appeal out.

I did have the opportunity of taking the case to a tribunal, which I took.

The first tribunal was scheduled for January earlier this year. I was so nervous, it's a little like a court situation in that there is a judge and a dr. who preside, a clerk for note taking, and yours truly.

The procedure took around 10 mins as it became obvious that they didn't have the relevant reports that I had forwarded to them due to an admin error, so it was adjourned.

The next tribunal was set for September 9th 2011.

This one would be so easy, it gave me the chance to 'put my case' and they now had a wealth of material to make this a forgone conclusion, so I went on my own . . . . . .. . . . . . . . . . . . . . Yes, it was a forgone conclusion all right.

They had concluded that; Piri, What? and pubendal, Hmmmm never heard of it, . . . do NOT exist!

I pointed out my medical reports from Dr's Filler and Greenslade.. . . . 'Who were these people? for all they knew they 'could be quacks!' They went on to say that if it was found that the 'dodgy internet' information had been purchased for deception, those people (which included me of course) could be facing a long jail sentence!!! Bewildered, I was asked to step outside. On my return they told me they had googled piriformis syndrome and come up with 'PS does it exist?' I couldn't believe it and said, 'I have presented you with scholarly articles on these subjects, AND YOU GOOGLE THEM!!'

but my evidence was seen as more 'dodgy internet information'. . . even though they'd had much of it for 8 months some for 2 years, surely it could/should have been checked out before hand. . .Why hadn't they GOOGLED Dr Greenslade to see what kind of 'quack' he was. No that's far too easy and sensible.

This tribunal took nearly 2 hours, by this time I was in tears but doing that really embarrassing catch in throat, child like sobbing. . .it didn't matter as no one was interested in listening to a word I said anyway. sob, hic, sob!

Maybe that's not quite true , they were obviously going to throw this duplicitous, deceitful and dodgy case out from the beginning and perhaps the fact that I did put my case, before dissolving into mush, meant that another adjournment, rather than an outright dismissal was actually some kind of success.

The tribunal asked for some help in this medical matter because the case is so 'complicated'. They have enlisted the SECRETARY OF STATE, yes you heard correctly. . . . the secretary of state to help. . . It's only me for goodness sake!

They needed to know: do PS and PN exist? if so, how are they caused and what experts exist in this country and more preferably locally.

If they had been listening and had done a little research before hand, they would have known answers to these questions already.

The secretary of state was a bit busy, so delegated the task to a Dr Clare Leris who is a medical advisor in Leeds.

After some research she has concluded that 'although these conditions are rare they do exist', Whoopee!! Good of her to allow me to actually have the nerve and muscle pain I have been suffering from for over 3&1/2 years. but she couldn't find any conclusive evidence about the cause(s) of piriformis syndrome.

She rang a neurosurgeon to ask his opinion. Oh NO! I've been here before. . neurosurgeons should know but don't, and then their ego's often won't allow them to be wrong. . . . 'he has not diagnosed or seen a case of piriformis syndrome but is open to the fact that this problem can exist' Phew! that's better than the neurosurgeons I have encountered. . .

'His understanding of the syndrome is that it happens spontaneously and CAN NOT BE CAUSED BY TRAUMA'

So I am almost back to square one, even though every bit of literature about PS causes states that PS is caused by trauma! I would expect they will take the word from this 'expert' who has never seen a case or treated a case of piriformis syndrome.Although, at one time, I wouldn't have believed that a neurosurgeon didn't know about all things sciatica, but that was ages ago now, that was when I did have faith in the medical community in general.

I have sent a letter wondering if it is wise to take the word of this inexperienced 'expert' but then I am the duplicitous, mendacious, fraudster with dodgy internet connections (that means you : ) that does) who buys reports from any old 'quack' to support a medical problem that she didn't know existed. What a trauma! ~~shakes head~~ I will fight it all the way however. It may help someone in the future that PN and PS have some sort of legal standing in Britain. If anyone is having trouble with a GP or specialist, don't worry it is official now PN and PS exist!!

I will report on any future dealings with them. . . ding, ding round 4! Put em up!

[ncoplin]

So impressed with you! Stick to it!

[helenlegs11 Volunteer]

Thank you :).Don't worry I intend to. It will probably be months and months time unfortunately. The benefit system here, with regard to tribunals is massively choked up as they are just about refusing everyone initially it seems. I totally get the need to save money and I'm sure there are people who have had benefits in the past who 'know' the system and have 'worked' it. That needs to be eradicated but every tribunal is costly too, I'm sure a couple of hours of a judge/solicitor or doctor don't come cheap. So for all I want to get stuck into it now I'll have around 9 months to wait. UGH!

[PPSN_JudyB Pelvic Pain Support Netwo]

I was at a meeting on Monday with health professionals this week developing a pelvic pain pathway for commissioners where a health professional questioned the existence of pudendal neuralgia or nerve entrapment. You can imagine my response !

One of the clinicians present said it exists but is overdiagnosed

[helenlegs11 Volunteer]

I know that Piriformis syndrome is said to be over diagnosed as anything back or pelvic related that couldn't be properly explained was given the PS tag to appease the patient instead of 'I really haven't got a clue exactly what the problem is,' which was probably more accurate.

There are very clear symptoms with both conditions. I don't comprehend why it is so hard for them to recognise those undeniable medical problems.

It's a dreadful thing being labbled a fraud, simply because the very people who should know, don;t.

I would have thought that The Nantes Criteria has got to make PN undeniable.It;s such a shame that PS has possibly been over diagnosed in the past; neurosurgeons almost say the words with a sneer which doesn't help actual sufferers one bit. There is a mountain to climb just to get a diagnosis never mind any appropriate treatment.which is all anyone is after, not a battle getting there.

I am so pleased that these issues are being considered, as this country is lagging far behind many others in this complicated area. If they want to know what both are all about you can tell them to ring me Judy

Keep up the good work.

[PPSN_JudyB Pelvic Pain Support Netwo]

The GP rep that was present also cautioned against secondary gain: she was challenged on this by several of the others present. A psychologist responded : " do you really think patients want to be going through this ? " I think this was an eye opener and an insight for some of those professionals present into what many of us have to deal with on a regular basis.

[helenlegs11 Volunteer]

That's good to know Judy, thank goodness some clinicians seem to 'get' it.

I have 'met' so many helpful, friendly, generous people on forums like this one. Not what I would always expect from people who are in pain.

Non have been malingerers or 'poor me' attention seekers, simply people with painful problems they would like to be treated.

I'm glad the GP rep's attitude was challenged. It can make all of the difference to someone with a diagnostically difficult problem if their GP, who may not have any actual answers, tries to help and get's 'on side'.

It should not be forgotten that depression can be a real factor in this equation, Not being listened to, or helped can lead to a feeling of hopelessness and abandonment by the only people that can help.

That is a very lonely, desperate and painful existence.