Pelvic pain is as prevalent as ?????

Did you know there are as many people in the UK with pelvic pain, as there are with asthma or back pain?

Well maybe here, we could have made a good guess that these figures were possibly on a par, BUT, the most wonderful thing about these recently researched statistics (from the Pain Audit 2010-2012) is that the NHS is taking notice now too.

I would hazard a guess that some of those in the back pain category should really be in the pelvic pain group (me for instance) so those pelvic pain figures may be even higher! This almost doesn't matter now, except on an individual basis of course, because even with those wrongly categorised, the figures for pelvic pain are large enough to focus the attention of those who can make a difference. And what a difference it is going to make.

The first NHS pelvic pain workshop in London has already taken place. Professor Muir Gray, or Sir Muir Gray (both, at once?) introduced and led the proceedings, while Professor Khalid Khan, Judy Birch and Dr John Hughes gave their own presentations to an audience of around 30 interested medics and 5 very interested pelvic pain patients. I was one of the latter and as I’d failed ‘A’ level biology eons ago, I felt completely out of my depth although extremely happy to be there. Initially, I had no idea just how important this event was going to be but it soon became clear that a great deal was expected; getting up at 4 am was worthwhile.

The patients were separated out to different tables, as I desperately stared at peoples chests (name badges; absolutely no other reason) ascertaining who was who in this esteemed company. I found myself sitting between a lovely physiotherapist and the clinical lead working with Dr Curren and Baranowski in London.

Speeches were made. Facts, figures and clever research info, bandied. Multiple laparoscopies, questioned. Areas for multidisciplinary therapy, spottily identified . . . . . . All of it, every tiny scrap of it was about US!!! It is official, we do exist!

So now they realise the extent of the problem what are they going to do about it? Well if you want to read through ‘Guide to Chronic Pelvic Pain 2012,’ that will give a mmm ‘guide’, no better word for it, but with NHS objectives, such as timely intervention and a diagnosis with best evidence available etc discussed, fiddled about with, changed and added to. During the afternoon session one doctor stood up and told how much he had learned from his patient (our own Jacquieb) so a patient’s perspective has also been taken into account! Oh how I wish that my GP could have been there. She would have been hiding under the table in shame.

The only thing that I did take exception to was the way they all followed the ‘Guide to CPP’ recognising the need to rule out ‘easily identified’ causes for pelvic pain. Although the complexity of that anatomical area was never denied, quite the opposite, I have found out that there are many pelvic pathologies that are far from ‘easily identified’ or even ‘identified’ at all in some quarters. I would take pelvic neuropathies as an example, as I have found that many medics actually deny their existence, never mind 'easily' identify and then exclude.

From being overawed, I am now overjoyed. The 2012 pain audit has identified our numbers, the medics at this workshop have decided to stick their own heads above the parapet on our behalf and Judy Birch & company have had the tenacity to keep on being tenacious to allow the patient participation in such an auspicious event.

Although we didn’t get to the end of this pelvic puzzle and probably not even the middle of crossing the i’s and dotting t’s, (you can see how useful I was.) The NHS objectives and agreed criteria for the pelvic pain patient will continue to be rolled out, as there is to be another follow up workshop(s).

I hope that I will be asked again, as I do have a lot more to say instead of writing ‘things you must say’ on a piece of paper and then . . . . not.

It is wonderful to know that at last someone is taking us seriously. I really do think that we are on the edge of something that I didn’t think could happen, without more war, more ignore, much petitioning and ultimate martyrdom! Hurray, I can hang my Joan of Arc outfit up now although, ‘Lawks a Lordy, my bottom is still on fire,’ the people who matter are taking an interest. Not just in my bottom either! In yours and yours and . . . .

5 Replies

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  • Amazingly written Helen, well done you. Great to meet you at last!

    Thank you Judy too for the invitation and for all your hard work in setting up this seminar, jx

  • Thanks Jac, you had gone when your doctor stood up but I'm so glad he did. Think I need some of your persuasive charisma with my doctor ;) Lovely to meet you too.

    I must echo your praise and thanks to Judy. Her sterling work has allowed the pelvic pain patient to be involved with this, and rightly so. We have had to learn so much to get anywhere in this complex but hopefully no longer controversial medical field.

    Hx

  • This is wonderful news to wake up to on a Monday morning. Thank you so much Helenlegs11. I would love your article to be splashed all across the newspapers, magazines and on the tele !! Whats the chances of me coming to the next workshop? x

  • What an informative post and thanks both for your contributions here and at the event. think it's an important landmark for those with pelvic pain because it is a patient-led initiative. My input was bringing interested people together: health professionals from a wide range of disciplines, generalists, specialists and patients. Lee Priest, trial coordinator at Birmingham Uni collated the background information and Tracy Holtham at Queen Mary's Uni ( Women's Health Research Institute, London) did the e-mailing/contacting participants and PPSN Trustees, Shirley Keay and Jenny Birch did the attendance certificates, evaluation forms etc. Several patients who do a great job on here: HealthUnlocked, attended. The feedback from the workshop was very positive with several comments about the valuable input from patients. Great teamwork. There were even some tweets during the day which I stumbled across !

    Thanks for your interest Marion, the follow up workshop may be in a different part of the country: where are you based ?

  • Hi Judi

    I am based in Hereford but I will travel if its not too far. I will just bring a pillow with me to sit on 1!!

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