Feature image from ITPANDME
Menstruation, one of the most subjective topics for women with bleeding disorders. The most common bleeding disorder is still von Willebrand Disease, which is caused by a defect in the bodies ability to produce a protein that helps the blood clot. VON WILLEBRAND Disease effects both men and women, but women are far more likely to be diagnosed with the disease because of the most obvious symptom of heavy or abnormal bleeding during menstruation.
In fact, heavy bleeding during menstruation is a common means of diagnosing a lot of platelet disorders in women. “Of all women with excessive menstrual bleeding, up to 50% will have a bleeding disorder,” says Deborah L. Brown, MD, an associate professor of pediatrics at the University of Texas Health Science Center in Houston. “This is a common problem among women of reproductive age.” 2007
When I was first diagnosed with ITP I was given a hormone drug to prevent menstruation. My platelet count was so low that getting my period was considered dangerous but I had not noticed anything strange in the lead up to my disorder. I had not noticed particularly heavy bleeding.
There is a lot of information online telling women with a ‘Heavy Flow’ to head to the doctor and get themselves checked for bleeding disorders. Once diagnosed however, there is not very much information about what you can actually do to deal with this particular issue.
I was inspired to write this post because I was certain I would be able to help in some way, but the more I think about it the more I am at a loss. What I have found, in the last 5 years is that, very simply, everyone is different – Every woman menstruates differently – Every period for that woman is different – Every doctor, friend and partner interprets your period differently – And most importantly, no one will ever know how it feels for you.
So how can we help each other? Perhaps all we can do is open up about it. Hopefully it might dispel a few myths about what an abnormal cycle is.
Mine is always different, totally irregular, very unpredictable and quite light at times. So while I have heard that ITP woman can have a very heavy bleed, I can tell you that it is not always the case – not for me anyway. Some times it comes on hard and strong. (The longest lasted 4 weeks – and yes I certainly went to the doctor) Other times I barely notice it passing. For me, the issue is irregularity, unpredictability and very inconsistent symptoms.
What do I do? I map it and pay attention. What felt like total chaos started to make a bit more sense to me. I begun to see that I have a very long cycle then a very short cycle. Before you can start to really manage your period, I suggest you get to know it first. Knowing how your body works is the best way of knowing when things are different.
There are plenty of ways to follow your cycle, like a diary, or a paper period journal but I prefer to use something like an electronic diary specially designed to log, track and predict your cycle, flow, symptoms and moods. There are many to choose from, if you search ‘period’ into The App Store or Google Play.
For me it is important to know and understand my moods in relation to my period. This is so I can separate my symptoms from low platelet moods.
Knowing your own ideas of a ‘Heavy’ flow will mean that you can compare your symptoms to your symptoms alone.
So here are some of the issues I am facing, perhaps you are too. When it is heavy, my energy levels can plummet along with my libido. I feel out of sync with those around me and are distracted by always having my period on my mind. I feel uncomfortable and restricted. I struggle with feeling self aware and self obsessed and incredibly conscious of my body.
I can become quite negative during this time, frustrated that I have to deal with heavy bleeding. And sad – that no one else has to deal with as much shit as me! (I know, so much self pity!)
Sometimes there is not a lot I can do. And I certainly wish I could offer more help than this.
Yeah I’ve been there… Yeah it’s heaps shit!