My story – VWD & me

When I was about 12, I started having periods. Not unlike most girls when they hit menarche, they were very light, not at all regular, and all in all, nothing really to worry about. By the time I’d turned 14, the light periods had gone and the ‘real’ ones had arrived. My ‘normal’ menstrual cycle is nightmarish – very long (untreated, my periods were usually between 8-12 weeks in length from complete start to finish, though I’d had both shorter and longer ones too), heavy, with a tendency to lighten off then get heavier again before stopping completely, ridiculously painful (passing out was a possibility), and completely unpredictable (they count happen anywhere from 2-16 weeks after the previous one had finished). My mother had experienced similar symptoms with her menstrual cycle, though with no medical assistance (which was pretty common at the time), and decided that me going through it as well wasn’t going to be good enough.

A bit after the start of year 11, when I was 16, we met with my GP, explained the situation, and within a few months, 2 specialists (a haematologist and a obstetrician) and more blood tests that I can remember, we had a diagnosis. Type 1 Von Willebrand’s Disorder, with my native factor levels sitting somewhere in between normal and completely deficient. Step 1 – big tick. With a diagnosis, I could now look at effectively treating the bleeds. It took a while, but we finally found a combination of medications to manage the severity, length and pain levels associated with my bleeds. Getting them to the ‘best’ level took a bit more time, by the time I’d hit the end of the first year on university I’d found my treatment ‘sweet spot’ – the bleeds were as mild as they were going to get, and I had a pretty good rhythm with treatment. As good as it got for me was being able to predict when I was having a bleed, not having more than 1 every 3-4 months (this was advised by my doctors because even medicated, I still loose a lot of blood), and being able to stop the bleeding after a week. For the most part, I was able to continue going to school, uni and work without having to cancel anything, though I did fall asleep pretty quickly during those period weeks.

In the years that followed, with my periods more or less under control, I started to notice the other things – the frequent bruises, nose bleeds, gum bleeding and the other bits a pieces that go with a VWD diagnosis. So we added more treatments to my arsenal – I got my DDAVP testing done during university after a cheeky razor blade gave me a small cut on my thumb which bled for 4 hours, my GP got me on to a ointment to help with the nose bleeds, as well as using frequent hydration, and we kept on finding solutions to problems as they occurred. So while the VWD symptoms seems fairly under control (though I have to admit now that it would be not the case!), I ended up having lots of other general health problems – getting sick a lot during winter (to the point that I started having the flu vax yearly from 17!), not regularly exercising, and eating a standard Western diet. All of these things started having an effect on my VWD – the random, spontaneous bruising got worse, I had more frequent blood noses, especially at night time, with the frequent colds and flus I started bleeding in the throat, and a couple of years ago I started having rectal bleeds. Oh yeah, height of fun that one!

And then, around a year and a half ago, my menstrual bleeds started getting worse. Just a little bit at first, a bit harder to stop, more pain, and more blood loss again, until around 12 months ago (March 2013) when again I found myself scooting between my 3 doctors trying to work out what was going on. At the same time, I was completing the 60 Day Challenge at my local barre studio which completely opened my eyes to the role of eating and exercise. By the end of the challenge, I no longer had spontaneous bruising (all the low impact work in barre classes strengthened my muscles and joints beyond belief!), most minor injuries which used to cause me grief either didn’t show a mark or bleed at all or healed much closer to ‘normal’ timeframes, and my rectal bleeds ceased completely (goodbye gluten, hello veggies!).

My menstrual bleeds returning turned out to be caused by developing a tolerance to all of the medications I was on – basically, we had to go back to the beginning and try out new options to keep the bleeds under control. But after my experiences with food and exercise, I was determined to find out what other lifestyle measures I could implement to keep myself healthy. I started seeing a Traditional Chinese Medical doctor, who has helped me make some amazing changes – I now have little to no PMS symptoms, I’ve learned to control my pain with meditation and food (not prescription pain killers!), I no longer get vicious hot and cold flushes while menstruating, and I’ve been able to reduce the number of clots I pass almost to zero. All with the drug-free options of food, meditation and other lifestyle changes.

Starting this blog was also part of my healing – the opportunity to connect with others affected by conditions like mine is so invaluable. I am also incredibly inspired to share what I know, and how food, exercise and other measures can help even genetic conditions like mine. I believe the story of women with bleeding disorders is not widely known, and I hope to become a advocate for those like me to have access to a wider range of treatments, to feel supported in sharing their struggles, and to learn how to live in harmony with their condition (even learn from it!).

Please leave a comment on any of my posts if you have something to share or would like to know more about any of the topics I write about. I feel driven to connect with others and share what I know, so your input is greatly appreciated. If you’d prefer to share privately, check out my ‘Contact’ page – there’s a link to my Facebook page where you can send me a private message. Thankyou for reading!

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2 Responses to My story – VWD & me

  1. What an amazing story. I have 2 boys who both have severe haemophilia, the gene coming from me. I didn’t know I carried the gene but it sure explains the bruises I get!
    Was there a book you followed to learn how to go gluten free? Well done! What a success!

    • The book I found most helpful was ‘It Starts With Food’ (by Melissa and Dallas Hartwig, you can find it on Amazon). They explain a lot of the science on why certain foodstuffs (including wheat/gluten) aren’t good for you, as well as what is good for you. Understanding the ‘why’ made it so much easier for me to stick to my guns when bread/pasta cravings reared their heads!

      They have some recipes in their books too which are really useful to get started. Their website/forum are also filled with free recipes/advice.

      Wow, two in one family! I’m sure you’re all very resilient and have great senses of humour! 🙂 Lovely to have you reading along.

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