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A New Hope

March 15th, 2015 | 2 comments

Just a quick post today to keep you up to date with my medical journey.

If you’ve been reading along here for a little while, you’ll be familiar with my diagnosis and that for over a decade, the primary form of treatment I’ve been on has been contraceptives. You should also be aware that over the last 2 and a bit years, I’ve been having recurring issues with that form of treatment – I’ve stopped responding to multiple forms and dosages in that time. Attentive readers will also be aware of my exploration of new forms of medicine and treatment – nutritious whole foods, exercise, Traditional Chinese Medicine and Acupuncture and meditation.

Over the last few months, I’ve had more issues with medication failure, and I felt it was time that my treatment was fundamentally changed. Clearly, the contraceptives aren’t something my body is going to respond to in any helpful way anymore, so I have been along to my doctors and talked to them about the idea of changing how we treat my VWD.

I’m very pleased to say that my doctors have agreed to allow me to come off the contraceptives and try factor replacement therapy, which means I’ll be giving myself a partial blood transfusion of the bit my body doesn’t make enough of during the worst of my bleeds, my periods. I’m really happy about this change for a variety of reasons, the most important of them is that I’ll finally be treating my condition, instead of suppressing the symptoms of my condition (which is how the pill works – by preventing ovulation, it aims to prevent a severe period bleed. Without ovulation you won’t have a period, so in theory you also shouldn’t be experiencing the kinds of severe bleeds that are all too familiar to myself and other female bleeders).

However, this change is bringing with it some new challenges.

Firstly, taking the pill for such a long time has some consequences. As I mentioned above, the drug works by inhibiting ovulation, but in order to get my new treatment to the point I want it to, I will need to be ovulating and having a period a) at all, and b) eventually regularly. The pill also interferes with gut function, so I will be working on restoring my gut and natural ovulation patterns with the assistance of my doctors.

Secondly, in order to routinely access a vein to inject my new treatment, I need to have healthy, strong veins! So I’ll be working on having a strong upper body and healthy veins to access through both exercise and diet.

I’m really really excited about these changes – to be finally treating the cause of my condition, instead of the symptoms feels like a massive leap forward. While I’m still waiting for my first post-pill bleed to happen (and therefore my first go of testing out the use of factor), I feel very confident this is going to produce better results for treating my VWD than the previous medications I’ve been on. I’ll be sharing my progress over on Facebook and Instagram – I’d love for you to join me there and say hi!

One final note – yes, the title was a Star Wars Reference (though I don’t associate my VWD with The Empire!).

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