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Originally Posted by IdentityCrisisMama  I will consider having DC tested (we just don't really do the doctor much). What is your treatment, Tanya and Kim?
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I hate the doctor too, but excessive bleeding can be dangerous, particularly in emergencies or postpartum hemorrhage, and things like that. This is why it's good to know if you are at risk. And there are many ways that the process of clotting can be off - it's not just the disorder I have.
I've never had particularly heavy menses, though many with vWd do have this symptom. This is one reason I never realized I had the problem.
I have had nasal and oral surgery before I knew I had the bleeding disorder. My mom told me the surgeon came out after surgery (I was still out of it) and talked to her. She said he looked just white in the face and scared, and told her that I had lost a LOT more blood than he expected. I guess they stopped just short of giving me a transfusion (I've never had one). But it took this experienced surgeon by surprise, he had never seen that kind of blood loss from this kind of surgery. Also I seemed to bleed a bit more than usual from my oral surgeries.
The kind of thing I have varies with the hormones, so at certain times of the month it's potentially worse than others. But I don't get the bleeding every month. I just know when the risk is higher. Since I know all this now...I won't schedule any surgery for that time of my cycle. Nothing I can do about emergency surgery, though. But I can inform any doctor or ER that I have this condition (many doctors still don't know what it is and how to treat it, but they can contact my hematologist). With the type of von Willebrand's I have, things like surgery and childbirth can be prepared for. I can take some of an anti-diuretic medication called Desmopressin Acetate (DDAVP), which has a side effect that works short-term to pull out all the vW factor that has been stored in all the little hiding places in the body. This is enough to get the blood to start clotting normally. Now, I am SO not big on medication, but if it keeps me from bleeding to death and especially since it's a one-shot thing, I'm all for it.
Yes, my bleeding does get worse with the cold weather...it increases the chance that I will get a nosebleed. But I've also gotten nosebleeds in the warm weather, too. It's way more correlated to my menstrual cycle. I've had a couple of instances where I couldn't get the nosebleed to stop. The first time, I didn't know about the vWd, so I went to urgent care and got it cauterized. The second time was after I knew about the vWd, and now I have a small amount of DDAVP at home in a nasal spray version. I just sprayed some in my other nostril and wow, the bleeding stopped almost instantly. If I ever have some kind of accident at home and am bleeding profusely, that little spray could save my life. I don't use the spray unless I've tried everything else first to stop the nosebleed. I usually use the Nosebleed QR product (a clotting powder applied topically), and that works most all the time...except that once, so far.
In addition to having the DDAVP available, I'm careful with supplements. As Tanya mentions, the EPA in fish oil is a blood thinner. My bleeding may be a bit more severe than hers, so I avoid EPA altogether, and do a DHA-only supplement (Neuromins). I avoid supplemental vitamin E. I also avoid too much vitamin A. And - thanks to Tanya - I take some extra K2 on occasion. All this helps reduce the chances of me getting a nosebleed, but I still get them, maybe a couple times a year. I also use herbs, and I'm careful to look up the contraindications for each herb and see if it's a blood thinner. I avoid those, too.
So that's what I do. Your DD's presentation may be different, but just be aware. If her symptoms get worse as she approaches or enters puberty...definitely get her checked. One word of awareness though. Since mine is a hormonally mediated disorder, the hematologist (being a conventional doctor) offered me birth control pills to "help" with that aspect. I declined, as you would be free to do also. But overall I think it has been helpful for me to be aware of a potential bleeding issue and have tools available if necessary.
yes, this is me too...I was mid 30's before I figured it out. My bleeding occurs mostly as nosebleeds and if I have oral or nasal surgery. Occasionally I have periods of bruising here and there, but nothing majorly huge. Most of the time it's pretty normal. It took the hematologist two rounds of testing to figure out that I have low-level von willebrands. It does run in families. I'd get it checked out.
