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!
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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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9780765_tn?1405914514
I went through some of the same things as you did.  Growing up I fought with bloody noses just to be accuse of picking my nose or something that I didn't do.  When I was a teen, I was out sun tanning and I passed out to wake up full of blood and had a nose bleed that could not stop.  I had to have my mom take me to the ER just to be told I was anemic. I never took aspirin much to say if or what reaction I may have or had with it.  I bruise like no other.  I scar from scratches that barley bleed.  I am on Seasonale birth control so I will only have my cycle every 3 months as I get sick if I have it monthly.  I had all 4 wisdom teeth removed before the diagnosis and I missed almost a month of work due to bleeding and healing problems.  My gums bleed when brushing, I hate to floss because of this.  
As far as how they found mine, I was getting diagnosis for chronic bladder infections and they put me on a macrobid medication that would make my veins in my fingers burst!  I was awful.  They did a blood test and found my VWD.  By then I already had one child (delivery went fine).  I now go to a cancer and blood center where they specialize in these disorders and I get tested.  After having my second son (again delivery went fine), I am at stage 2 now.  If I have to get any type of surgery, I have to get an IV done an hour before.  I am still on Seasonale birth control.  I carry a syrup (do not remember the name) for if my cycle gets too heavy, if I get cut, or a bloody nose or something.  My 8 year old was tested when he was 5 yrs old.  They do not have children's VWD factors but I was told that on an adult scale, his blood was grade F, so he would have VWD soon.  He is 8 now.  I have not retested him yet due to lack of issues and he is not the type for football or hockey.  I had my 4 year old tested at age 3 due to tube surgery for his ears, but we got a false report due to faulty testing.  They just treated him as if he had it because I did not want to submit him through the test again.  It may be just a blood draw, but on little ones, that's a lot.  I would say that if you talk to a doctor and they mention testing, I would suggest a blood special or blood center as I had the experience of my basic clinic having the faulty test.  But I do think from your symptoms it would be worth mentioning as I have to be careful with any medications I take and I even check with my vitamins.  And now with being stage 2, I have medical sheets I carry with me and the syrup incase of emergencies or accidents or something.  I have even thought about a medical bracelet.  But it doesn't stop me during my everyday life.
I hope this helps.
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