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The Silent Epidemic- More on Persistent Pelvic Pain

11 November, 2013

Imagine if there was a measles epidemic that nobody knew about? There would be an outcry once the Courier Mail found out about it. Journalists, the public, the Opposition would be baying for blood. Who is responsible for suppressing the information, the statistics, the preventative measures, the answers to this epidemic? Why hasn’t it been spoken of?

And yet, to me at least, there is an epidemic of persistent pelvic pain and sexual dysfunction which not too many people are aware of. When these problems are within relationships, more than one person suffers. And sadly it is very difficult for these affected women and their partners to have a chat to their friends, mothers, sisters…even with their GPs – about what is going on. It can be humiliating, shameful, distressing, and for many women just too embarrassing to raise. So they soldier on, alone, not knowing how to treat their condition.

I have written a previous blog about how to manage Persistent Pelvic Pain (PPP) and I ask all my patients and prospective patients to read the blog before they attend for treatment because it sets the scene – that there is a new paradigm when managing their pain. I have written again today of PPP because I have just returned from Melbourne where I have once again participated in the Explain Pain Course run by Lorimer Moseley and David Butler, so thought it opportune to write more of the wonderful concepts presented at the workshop.

Dave Butler      explain pain book   Lorimer Moseley

I say participated rather than attended because that’s the way Lorimer and David run the course- it’s a bit like attending an interactive play. Lorimer and David are inspiring lecturers and are passionate about spreading the Explain Pain message – and I have realized, that despite having attended the course a few years ago and reading constantly on the topic of managing pelvic pain, it is totally worth revisiting this course every couple of years to keep up with the latest research, the subtle changes and advances in the latest pain knowledge and checking out Dave Butler’s rampant, colourful wardrobe!

I had intended writing about some salient points from the workshop in this blog but it will have to wait until my next entry. Because in this blog, I want to share a patient’s pain journey.  Today I saw a wonderful (and you’ll discover very articulate) young lady, I’ll call her Charlotte, who I saw for the first time about 6 weeks ago and who has already in a very short time benefited from the majesty of the Explain Pain strategies. The feedback from my patients is they benefit from reading patient stories and gain confidence that their pain may be helped and even cured, because it has happened for others in a similar predicament. I have a number of my patients writing paragraphs for this blog and I know you will feel encouraged and inspired by their stories in the future.

So here is Charlotte’s story:

My Journey by Charlotte

My pelvic pain began suddenly. I went from having the normal life of a nineteen year old girl to being bedridden almost daily.

For a few months, I suffered from constant pain, as well as urinary frequency and urgency. During this time, I was unable to have sex with my boyfriend without being left in severe genital pain. I became miserable, not only because of the excruciating pain I was in, but also because of the impact it was having on my relationship, friendships and study.

After many sleepless nights, I found myself in the emergency room. All my test results were negative. They assured me I had no physical reason to be in so much pain. They gave me Panadeine and some antibiotics, ‘just in case’ and sent me on my way. Weeks after my hospital stint, the pain remained. I had university assignments due and exams coming up. I remember sitting in my lecture, crossing my legs and trying not to burst into tears.

I didn’t have time to be in pain. I didn’t even know what my pain was.

It was during this time that I stumbled upon Sue’s blog and contacted her. She listened to my story and assured me that she would be able to help.  At first, treatment was very daunting. When I thought of pelvic floor dysfunction, I thought of mothers and older women, certainly not girls my age. I didn’t think I’d have to be re-learning how to use the bathroom for many more years!

I was put on Endep, a mild anti-depressant. I’d never been on any kind of medication like that, so it seemed foreign to me. When Sue showed me the dilators, I felt even more unnerved. Firstly, I live in a share house (!) and secondly, it seemed like it would only just make the pain worse. I also had to undertake a bit of a ritual in order to have painless sex, which isn’t the most alluring foreplay technique. Luckily, my boyfriend is incredibly supportive.

Despite being overwhelmed at first, I was determined to get better. All these strategies soon became invaluable to my pain management. Just over a month on, I am already seeing improvements. My bladder problems have nearly disappeared and I am able to have sex without pain! I still experience pelvic pain sometimes, but I now know what to do in order to manage or stop it.

I learned that pain management is less about popping pills and hoping to be cured. It is a more holistic approach. As well as using the medication and dilators, I now try to alleviate stress during uni and give myself time to relax. Understanding the connection between my brain and my body has helped me so much with my pelvic pain.

 In my experience, some health professionals are quite reluctant to see that pelvic dysfunction is a cause for pain in young women. I hope my story shows other women that this kind of pain doesn’t need to be taboo and that there are ways to manage it. My journey is far from over, but these strategies have helped and will continue to help me so much. I have found the book Pelvic Floor Recovery Essentials to be very helpful and I treat it like a lifelong manual, no matter what your current age is.

I saw Charlotte today, rejoiced with her about her success, asked her to write about her story and tonight it was in my in-box! Such a powerful message and one so important it bumped a certain D. Butler and L. Moseley’s key points to another day.

NB: Charlotte was asked to discuss getting a script from her GP for Endep 10 mg not for depression, but because the medication has an effect on decreasing the messages from the pelvic region through the dorsal horn of the spinal cord to the brain- down regulating the nervous system. It is vitally important to discuss any medication with your specialist, GP or pharmacist.

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