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

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.

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...

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

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

I've had the same problems with dr's not knowing much about this. My dd was sent to a ped hematologist that knows much more than they ever did with me. Her reg dr suggested going off the pills after a couple of years to see what her body will do. I guess we will wait and see when the time comes. I'm just concerned about her getting pg later on. It's hard when you are always bleeding. I'm hoping things will get better as she gets older.

One gyn told us that if she follows my pattern she may also be looking at a hysterectomy later on when she's done having kids. I'm praying that she doesn't have to do that because although I don't have the bleeding anymore I do have a lot of other issues due to menopause that suck for someone my age.

Julie

well i was told at her age that i most likely would never have my own kids....proved them wrong twice and later found out that my body has grown used to BCP and only breaks them down enough to regulate my flow, but i got prego off BCP with both kids...so do stress when the time is right that she not SOLELY rely on the BCP for birth control...scarey i know...

i have had many bad paps and 4 surgeries so far in the region, latest is i have endo starting and the gyn said another bad pap for cervical cancer cells will be my scheduling for a hyst, not enjoyable news, but i'd rather that then the cancer cells developing...

Hmmm, I just hope that she does not have problems conceiving later on. I will keep that info in mind though. I'm sorry about the problems you are having. I never had any abnormal paps but I did have Undiagnosed Uterine Bleeding. Fancy term for "we don't know why you won't stop bleeding". I tried hormones and bc pills and nothing worked. Dr said that in most cases you end up taking everything out because you can't just bleed forever.

I was done having kids so I thought "great". I've had to deal with a lot of "old" lady issues and I'm only 38 and been doing this for 7 years now. I just have to think about the positive of no risk for Uterine or Ovarian cancer now.

Julie

thats a great positive too...glad they "fixed" you without knowing what it was, love when that happens....thanks for talking to me about this, not many people know VWD...good luck to you and your dd, and thanks again

I am new to this site and found this older thread. I was looking for any info/experiences with VWD and miscarriages. I was dxed with VWD about 2 years ago. I miscarried last month (my first pregnancy) after trying for 2 years.
Any info would be greatly appreciated.

Im wondering if I have Von Willebrands. I recently had blood tests taken because I was planning on have a plastic surgery procedure done. The tests showed that my PTT count was abnormally high, they retested my blood two more times and it came back the same. I have a recent two to three year history of unusal menstral cycles, going long periods of time without getting it and once I do its heavier and more painful than what Im used to. Im still trying to make an appointment to see a hemitologosit, but in the meantime Im trying to educate myself. Can anyone help shed some light on this situation?

Mara23-
If you have VW, you have always had it. I don't know if symptoms would just now be presenting in the form of your irregular periods. But I guess you could have been asymptomatic before. Do you have any other issues? Bruising, nosebleeds, scabs that take awhile to heal? Your family dr can test you for VW. Depending on how much he/she knows about it, just ask them for a test. Von Willebrands is actually a clotting factor in your blood, so it can be tested with a blood test. Good luck!!

Hi Mara23
VonWillebrands is a mostly inherited bleeding disorder in which a clotting protein called von Willebrand factor is deficient or defective. Von Willebrand factor is made by cells lining the wall of blood vessels. When vessels are damaged, platelets normally clump at the site of the injury. Von Willebrand factor acts as glue to help the platelets clump. Von Willebrand factor is also a carrier of clotting factor VIII, another protein that helps the blood to clot. There are 3 ypes: type 1 is where you just have a low level of VonW, type 2 is where the VonW does not work properly and type 3 is ther eis no VonW factor present and the factor Viii is low.
Symptoms can include:
easy bruising, nosebleeds, bleeding from the gums after a dental procedure, heavy menstrual bleeding in women, blood in the stool and urine, and excessive bleeding after a cut or other accident or after surgery. Heavy menstrual bleeding is the most common symptom in women and can lead to anemia. Patients with Type 3 disease bleed into soft tissues and joints and have severe bleeding episodes for no apparent reason.

Ther is also acquired von Willebrands which may occur in people with Wilms Tumour, hypothyroidism and Mesenchymal Dysplasias amongst others.

In my experience, I have type 1 vonWillebrands and am also hemaphilia type a carrier, my symptoms included easy bruising, slow heal rate from cuts/scratches/bites/bruises, increasingly heave menstrual cycle (eventually had hysterectomy). I have an infusion of DDAVP prior, during and post surgery.

hope this helps
ktee

I am new to this site and found this older thread. I was looking for any info/experiences with VWD and miscarriages. I was dxed with VWD about 2 years ago. I miscarried last month (my first pregnancy) after trying for 2 years.
Any info would be greatly appreciated.

hi! i was diagnosed with vwd type 2m last year along with my 9-year-old daughter. i've been asymptomatic. never had bleedings, unlike my daughter who sometimes nosebleeds daily for a long period of time. i had one miscarriage in the past and all my three children were born premature. my sister, whom i assume to also have vwd, miscarriaged 3 times. my other sister had profuse bleeding right after childbirth and went on a flatline.

i never understood why i couldn't carry a full-term birth until after i was diagnosed with vwd. thankfully, all my children grew up fine, except that one was diagnosed with vwd. i guess you need to tell your ob-gyne about your vwd so she can advise you if you want to get pregnant.