anyone with Von Willebrands Disease? - Blood and Blood Vessel Message Board

sapphiregem · 04-10-2006, 02:41 PM

looking to see who else has Von Willebrands...and wondering what you take for surgeries

joojoobee1967 · 04-10-2006, 05:01 PM

Hi,
My daughter and I have it. I had to have a hysterectomy 7 1/2 years ago(because of the VW) and they gave my DDAVP in my iv. My daughter has a nose spray called Stimate if she has excessive bleeding during her period.

sapphiregem · 04-11-2006, 08:09 AM

i have taken the ddavp, gives me the worst headache...

when was your DD and you diagnosed?? I have a 3 yr old DD and when she was born they tested her but said it wouldn't be a true reading till she was older as the blood still changes so much when they are little...

joojoobee1967 · 04-11-2006, 08:20 AM

Well, I was diagnosed around 16 when my periods were messed up. After my children were born things got worse. I was bleeding 20 days a month and nothing would stop it.

My daughter was just diagnosed last year when she started her periods(age 12). Things started out fine but 6 months into it she began to bleed heavily and for 15+ days a month. She had to go on bc pills and it took 3 brands and 6 months to find one that she wouldn't breakthrough. This was the first month she made it through the whole pack w/o bleeding through(yay).

We both have mild cases and this is the only time we have a problem. When I gave birth I didn't bleed a lot but I was still bleeding 9 weeks post partum and had to go on meds to make it stop. She will have to be watched when she has kids and hopefully won't have any problems.

Julie

sapphiregem · 04-11-2006, 08:34 AM

i can relate to your dd

i was diagnosed at 5 yrs old, i hemorraged (sp) after my tonsil surgery and my mother is a nurse and demanded more testing and not for it to be written off..luckily someone found it...at 13 i started my periods and like your dd was put on BCP immediately, i would bleed heavy 8 days off 8 days etc etc...i went through pills every 3 months, after about a year in a half they found one that didn't make me sick/passout/and work...on top of this i had ovarian cysts growing like crazy...i had many bleeding times done with the razor slice in my forearm to test the stop time and panels upon panels done...

i had surgeries cancelled due to PTT levels being wacky and doctors not wanting to chance it, i've received plasma during one surgery to avoid a transfussion

when i got prego i still had my period, and with my first they didn't test the ddavp on me yet so i flew solo, though whith pregnancy the levels got mush better, actually normal, though i had a 5 lb placenta and bleed heavily after birth, a bit too much but not enough to transfuse...

with my DS i had the ddavp and it was easy and normal...though he needed to wait a week to get his circ as they wanted to make sure he wouldnt be a bleeder...

do you find it hard to find doctors that know what this is??? i have had a few say "it's in the textbook, but you actually have it?" i am also a mild case though it comes in spells...i do hope your dd is on a good pill now, whatever you do don't let them experiment and take her off it after 3 months to see if her periods regulated on their own, they don't and your body doesn't react very well to the 3 months on 3 months off and back on again, i could have stayed with a few BCP had they not done that to me