Tuesday, December 10, 2013

THE HURTING STRINGS

I am slightly nervous as I type this, this story I have been apprehensive but also desperately wanting to share with you. Any time I typed a post about my journey for the past one-and-a-half years, I hesitated over the "publish" button and, instead, decided to save it for another time. But this blog is about me and to only share the frivolous aspects of my life felt like I wasn't telling the whole truth. The truth is, for most of the time I've been blogging, I've been living with a chronic condition. I've alluded to it before, but never really went into the details. When I discovered I had Pudendal Neuralgia, it was the most frightening and isolating moments of my life. It took away my ability to finish my Master's degree, along with much of the carefree life I once knew.

It had started when I began to feel the most physically uncomfortable sensations in my pelvis. I couldn't sit down without agony. The mental strain was horrendous. From morning to night, the symptoms progressively became worse to the point that "ending it all" seemed like an option I might one day have to consider. Catastrophic, I know, but help seemed so hard to come by. Ceasing sitting entirely (if I have to sit, I use a special U-shaped cushion) has been the only way to keep the symptoms at bay but I wish I could live a life without the shadow of PN always lurking behind me.

My GP had never seen a patient with my symptoms, in fact most doctors haven't. If they have, misdiagnosis is unfortunately the rule. It's difficult, as a patient, to find any help. This is a crying shame because, from support group interaction, I've discovered that this disorder is not as rare as people might think. Many of my fellow sufferers are prescribed heavy pain meds which, if it's at all possible, can make their day-to-day functioning even more difficult. And they often don't take away the pain. Surgery can be offered but the procedure itself is still very rare and not mainstream; cures can't be promised. Physiotherapy can help some patients whose issues stem from muscular dysfunction but again, knowledgeable practitioners are few and far between. I have been lucky to have a supportive husband who works hard to support us and help me with my search for answers. We spent a week in San Francisco with a well-trained physiotherapist, which gave me the first real "break" in my case. The fact that we needed to travel halfway across the world for some relief is ludicrous and clearly not an option for everyone with the disorder. Obviously one week in San Francisco hasn't cured me; I still require specialised treatment and I'm still trying to find it.

There is a huge discrepancy between the people so are suffering and the people who can help them and I believe much of that boils down to awareness. Because anything to do with pelvic area is so taboo, patients often feel they can't talk about it - sometimes even with their own doctors. That is why I am really, really proud of Soula Mantalvanos for being prepared to speak about her story. A Melbourne-based artist, Soula suffered with chronic, debilitating pain for four-and-a-half years before her Pudendal Neuralgia diagnosis. She has since become a Pudendal Neuralgia advocate, creating an immensely helpful website documenting her journey and resources she has found in her long struggle with the disorder. Soula is now hoping to create a documentary to educate practitioners, patients and the public about Pudendal Neuralgia. She is not far from achieving her goal of $5000 and with 11 days left for the public to donate, I think it's important that I get the word out. Please watch the video below and, if you can contribute in any way, big or small, I hope you will. You can find the link to contribute here. Thank you, from the bottom of my heart.



2 comments:

  1. Darling Anna, what can I say? I'm so devastated to hear you have this horror pain. Your post and support has touched me so much tonight. I've had a day battling to prove my invisible pain to the WorkCover medical panels. It's been horrific but your post has just changed the day. Have you seen Prof Thierry Vancaillie at WHRIA?

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  2. i can sympathise - i have something called a tarlov cyst which causes pain twenty four seven & its so rare its almost impossible to treat... nothing we can do but keep trying new things & making annoying little adjustments to our lives... i also have a special cushion hahah not really the perfect accessory for a twenty one year old :)

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