von Willebrand Disease Community
How did you find out you had VWD? What were your symptoms?
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WELCOME TO THE COMMUNITY: This Patient-To-Patient Community is for discussions relating to von Willebrand’s Disease (VWD), which is a bleeding disorder. It affects your blood's ability to clot.

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How did you find out you had VWD? What were your symptoms?

Hi, I'm trying to decide whether I should see a doctor. Apologies in advance, this is a long post, but I'd really appreciate some advice and opinions. I am 33 years old and have never been diagnosed with a blood disorder and neither have my parents, however I have felt for several years now as though something isn't right. I'm not really sure how to approach a doctor with my symptoms as I'm not sure they're anything unusual. So, here is what I've got...

1. I've been severely allergic to aspirin for as long as I can remember. It brings on nosebleeds and causes me to vomit blood. I also avoid NSAIDs as they give me a horrible bloody taste in my throat.
2. All through my childhood until my late teens I got very bad nosebleeds, sometimes 3 or 4 a week, lasting for at least half an hour each time. I was taken to the doctor but was told it was a phase and never had any tests/investigation. I still get them now but only once every couple of months if that. Though if I have a cold or a bad cough I might get 5 in a week.
3. I started my periods at 13 and from the get go they were heavy. They eased while I was on the pill but I stopped taking it about 5 years ago and since then they've got heavier. I've never been to the doc for this as they aren't particularly painful and I've just learned to get on with it - I only discovered in the last year that they are abnormally heavy. I've just learned to be uber prepared!
4. I bruise like a peach. The smallest knock will come up in a large bruise. (My mum is also like this) Sometimes I have bruises come up and I don't even remember injuring myself.
5. My gums bleed every time I brush despite good oral hygiene. I have asked my dentist and I have no sign of gum disease - he just said some people have sensitive gums. Sometimes they bleed spontaneously as well.
6.I had two teeth out a few years ago under general anesthetic and bled loads in the days following. Was told it was nothing to worry about.
7. Was almost given a transfusion at the age of 6 because of blood loss after an injury to my foot. I know feet bleed a lot so perhaps this is normal. It's the only major injury I've ever had so I don't have much to go on. I don't remember much myself but according to my parents it was pretty severe.

I'm not very accident prone and can't remember the last time I cut myself so it's hard to know if bleeding takes longer to stop than it should. Plus I don't really know what normal clotting time is. I've also, thankfully, never had to have surgery - apart from my wisdom tooth extractions. Basically I feel like an idiot going to the doctor with all this because on paper I don't think it looks abnormal and I don't want to come across like a hypochondriac. I've had these 'symptoms' my whole life, therefore to me they seem normal, but there's something in the back of my mind that says they're not.

Would anyone mind sharing their pre-diagnosis symptoms? Plus what prompted you to see a doctor? And if you have an opinion on my symptoms I'd be really grateful to hear it. Thanks so much for reading, and sorry again for the long post!
2 Comments Post a Comment
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Avatar_f_tn
I was diagnosed at 6 so I cant be much help but all the symptoms you describe could be related to vwd.
In my no medical opinion, your doctor will have much wilder requests to investigate than yours and will be more than happy to help - its what they're there for.
All the best on your quest x
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Avatar_m_tn
Thanks for your reply. You're right, I should probably just speak to a doctor. Plus I'm trying to get pregnant so it would be good to know beforehand if there's a problem. Thanks again.
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