Key to pelvic pain

[helenlegs11]

I think the name of this blog site is the thing I most wish for.

Pelvic pain, health unlocked.

Imagine that your condition was better understood by the medical community. That your symptoms were clinically studied, sagely heads nodded, boxes ticked or crossed and then you were given the all important (drum roll) diagnosis (flashing lights) and then, maybe some (*fire-) appropriate treatment (-works*). Well that’s the way it’s supposed to happen, isn’t it?

OK, it's a complicated area, the pelvis. So many interrelated muscles, organs, ligaments, bones, nerves, joints and more! massively complicated. Often effecting a domino reaction, a plethora of pelvic problems if one thing is amiss. Therefore, surely there is a healthy need for speedy DT's (diagnosis: treatment, well it almost turned me to drink!) to alleviate this potential knock on medical dilemma.

Necessarily there are also many separate medical specialists, depending on your diagnosis . . . . . . . (sorry couldn’t stop laughing there) Gynaecologists, urologists, neurologists, oh no! forgot! neuro’s do brains and spines (as there aren’t any nerves that can be trapped in the pelvis, apparently) Then of course, there’s the psychiatrist who’s help we all may well need by the time we’ve jumped from Pilates to post unnecessary op. Don’t worry, because you will probably be referred, regardless.

Well, it IS a diagnosis . . . . . just the wrong one.

You were probably too busy jumping through medical hoops initially, to realise that there are people who do understand, forum folk with familiar failings, ordinary sufferers who can help, emotionally and physically because we have all had be to our own medical detective to get this far.

I know that I wouldn’t have a correct diagnosis (mines the nerve thing) without the internet, sites like this and people like you.

By pooling our knowledge and experiences the next step can only be that pelvic pain becomes less of a puzzle until it is eventually unlocked.

Now, where did I put those keys ? ? ?

[jacquieb Volunteer]

My sentiments exactly. You sound like me, in the end the whole paraphernaila is a joke, at our expense.

n life what goes round come round, and one day we will all have our say.

j

x

[ncoplin]

This is my life! 100% So what can we do, who can we badger to put this condition into the spotlight.

[helenlegs11 Volunteer]

Well so far I have e'd 2 day time TV programmes, applied for embarrassing bodies (thought that was very brave) but they had already started filming the series So I wrote outlining the problems to 2 magazines and again got no where. Maybe it's the way I tell em!

I really do think that these 'complicated' pelvic problems do make for a good story.I saw Dr Chris interview a lady with trigeminal neuralgia (nicknamed the suicide disease) she had nerve pain in her face I have it in my fa

[helenlegs11 Volunteer]

OOOps! what happened there, pressed the wrong button, as I was saying pudendal nerve entrapment patients experience a more intimate pain. Perhaps we need a brave man to put himself forward for TV work. I'm sure erectile dysfunction and s s s scrotum (not my favourite word) pain. would be taken seriously.

[jacquieb Volunteer]

You bet, somehow a man's pain is taken more seriously. In my GP's surgery last week I commented that there were no leaflets or information about any form of pelvic pain, yet lots and lots on dementia, I am sort of heading that way with our "unsolved medical mystery" I also thought that if we did get a chance of put our experiences to paper than we need to call it " MY VAGINA IS ON FIRE", I am sure readers couldn't resist the temptation to read it. I know I would.

I think the way our pain is handled is downright degrading, frustrating and shambolic. The reason being is that no-one has an answer and to be honest that couldn't care anyway, why should they? there not suffering!

[helenlegs11 Volunteer]

Ha Ha, love that title :), although it is no laughing matter when the medical community, never mind ordinary people, have absolutely no clue about it and then a seeming unwillingness to accept the facts. I am unsure if that is from a, 'Well I'm a doctor and already know it all' point of view, or plain disinterest, both shocking.

The thing is that it is so easy to understand, with reasoned basic medical knowledge never mind 5+ years study.

Maybe the fact that slightly more 'interested' people, ie sufferers, can access the internet and have the audacity to 'self diagnose' in the hope that they will be able to find treatment isn't the 'done thing'. I won't apologise! The only reason I have an actual diagnosis and was referred for treatment is because a young locum actually listened to me, helped me and acted for me while my regular doctor was on sick leave. Thankfully some GP's do listen.

I don't want them to be experts in pelvic pain just aware of it.. . . . . Please.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to helenlegs11]

Interested in all this and the comment about the locum doctor. This was also my situation with the GP I'd been seeing for 17 years with severe period pain and endometriosis. He hadn't read my medical notes in which there were letters from two gynaecologists with information that should have alerted him to the need for me to be referred to someone with specialist surgical skills in the field ( of which there are very few ). By the time the locum ( who had recently spent time in Australia and knew what she was looking for ) got to read my records, I already had neuropathic pain and nerve damage, was suicidal with pain and have had years of ongoing constant severe pain. This is just one reason why we are advocating and suggesting that patients obtain copies of and familiarize themselves with the content of their medical records. Also taking this information to subsequent consultations is important. It can't be assumed that important information is passed on between health professionals.

Does anyone have an idea for a poll we could do about this ?

[helenlegs11 Volunteer]

It might be interesting to know how many different physio's and doctors including specialists (often the wrong specialist) people have seen or been referred to until they got a correct diagnosis or were at least being listened to at last.

Mine is 7 physio's. 2 were good, but not specifically pelvic physio's.

It took 1 and 1/2 years to even get piriformis mentioned but PN never was.

Own GP (useless) and if I asked her about pelvic nerve entrapments now she would look blank because she has ignored every bit of information I have given her. Still haven't given her the old heave ho! What is the matter with me!

Locum GP, wish I knew where she practised now.

3 neurosurgeons, the nearest one got, was pelvic soft tissue injury, which was correct actually, but then he added that it would take 6-12 months to recover from. The others said lumbar problem/DDD and offered me a spinal fusion.

Thing is I do have NERVE=NEURO problems but 3 neurosurgeons couldn't identify them. I would have thought the clue was in their title? ?

A muscular skeletal man who tried but had to refer me back to my GP.

and then 3 doctors who have had a clue, 1 who is currently trying to help.

I haven't been referred for any psychiatry as some have thank goodness although I did have some counselling, again offered by my nice locum dr. But the only thing that could really help my state of mind was some help and hope of resolution to my very real pelvic medical problems.

The trouble is that we flounder around from 'expert' to 'expert' so that it looks as though we are total hypochondriacs or impertinent, self diagnosing and troublesome (how dare we try to help ourselves and take our pain issues seriously)

I really am not bitter and twisted I just wish that things were better, not perfect just better.

[helenlegs11 Volunteer in reply to helenlegs11]

Maybe simpler to ask how many years it has taken for a correct diagnosis.