Hi, all. I just wanted to stop by quickly and introduce myself. I am 23, and just found out earlier this year that I suffer from von Willebrand's. I have extremely heavy periods, that can last for up to 2 weeks, as well as a lot of heavy bruising. I was referred to a hemophilia clinic about 300 km's away from here, and have been there once. I go again on wednesday. My fiance and I have been through many miscarriages, and am not sure of the cause of all these.

Anyways, just wanted to see how many of us there are. Nice to meet you all!! http://www.healthboards.com/ubb/smile.gif

I don't have the same thing as you, I have something called Factor V Leiden. I too think it has caused numerous miscarriages. What are the symptoms of your disease? For me, my blood clots too quickly. The thought is that each time I was pregnant a clot formed around the embryo and smothered it.

Anyhow, I'm sorry about your miscarriages and although we have different diseases I can understand how you feel.

Hi Lady! I remember you; I posted to you once a while back. I have the opposite-my blood won't clot on it's own. According to all they know about it, it shouldn't cause miscarriages, at least not if I'm type 1, which they originally diagnosed me with. But there is some doubt on that, so I'm going into a study on wednesday. I think it caused them-I have given birth twice, and three miscarriages, and in all of them, I bled lightly. But now that my levels dropped, the bleeding never stopped, and at 2nd and 3rd ultrasounds, there was no heartbeat. So I think it kind of wiped the fetus out or something. Anyways, I will find out more this week.

The symptoms I have most are very long and heavy periods (tampon and pad soaked through in sometimes twenty minutes, and lasting for about 10 days!!) and easily bruising. Many sufferers also have frequent nose bleeds. Also bleeding after surgery and tooth extractions.

Anyways, off to work for me. I work in a daycare. Take care, and write back and tell me all about you!!

Kendra

Well, not a whole lot to tell on this end. I am so happy that you were able to carry some of your pregnancies to term and have kids. I ended up having my tubes tied in June. I just had too much going on...this blood thing, diabetes, Rh negative. The docs said that if I did get pregnant I'd have to give myself at least 3 blood thinner shots a day, and I'd have to go off my diabetes meds and give myself at least 3 insulin shots each day too. Plus the diabetes causes a hostile environment for the baby and they'd be forced to take it as soon as tests showed that it's lungs were developed. Plus I have a history of ectopic pregnancies. Plus I'm pushing 40. So I went ahead and gave up and tied my tubes as I don't think I could've handled another pregnancy loss (I've lost a total of 6, 5 of them within 2 years). I'm a bit bummed now though cause one of my sisters just found out last week that she has the same blood disorder and she had no problems having a baby. So maybe it's not the blood disorder that caused the miscarriages, no one really knows for sure.

How old are your children?

I remember, I think it was like the first post I posted here, and I replied to your's about getting your tubes tied. I am so sorry about all the troubles you've had. I really empathyze with you. Did you and your hubby ever get tested to see if HE was okay? Or you just couldn't go on anymore? We have been trying to have a baby since my last miscarriage (March) and if it doesn't happen this time, I will be calling it quits, too. I'm only doing this now because my fiance wants one of his own. After the last one, my ob/gyn referred me to a clinic 300 km's away for testing on us both, but we haven't even gotten an appointment date yet.

My oldest son is now 7. I gave him up for adoption because I was not at a place in my life where I had anything to offer to a baby. He's a happy child, and I don't regret it at all, although I have times I grieve and still (and always will) love him deeply. My other son is now 6. He is the light of my life. I cannot express what having him in my life has meant to me. He truly is an inspiration to me.
Well, I just got home from work and still have things to do around here. Write back and let me know how you are, and anything else you feel like sharing.

Love, Kendra

Hi again.....by the way I have a niece named Kendra.

My husband never got any tests done. I was able to get pregnant easily, I just couldn't carry them very long. I really don't think that any of it was his fault considering all the problems I have. I had 3 ectopics as well, one of them resulting in a rupture. For whatever reason I just don't think it was meant to be.

We've considered adopting, but I'm not sure if I want to go that route to be honest. I sometimes feel that, although I'm not old, I may be too old to be starting a family now. I wish I had met my husband 10 years ago, then maybe I'd have had the time and energy to keep on trying on my own.

Did your blood condition affect you when you gave birth? And do you know if it was passed on to your child? How did they discover that you had it?

Lady- That's cool that your niece is Kendra, too! http://www.healthboards.com/ubb/smile.gif http://www.healthboards.com/ubb/smile.gif My son has been tested, and he was negative. But he'll need to be tested at least once more. His levels were so high, that it's almost suspicious. I have about a 50% chance of passing this on to any kids I have. Hopefully, he will never have it. But, being a male, he at least wouldn't have the whole gynecological spectrum to go with it.

I had major problems when I gave birth to him. I bled from the day he was born all the way until just around his 3rd birthday!!! http://www.healthboards.com/ubb/frown.gif They could find no reason for this, since no doctors are trained to look for this. I think they thought I was lying about the amount of blood loss, and the length of time it went on for.

Anyways, now they know that, unfortunately, I wasn't lying.

How did you discover your blood disorder? What are it's symptoms?

Kendra

Hi Zuzu. Well, I don't really have any symptoms except that I am more prone to blood clots and deep vein thrombosis. This can be very dangerous, though, as clots can travel to lungs, etc. and kill ya.

As to how I was diagnosed.....it was really pitiful. OK, I kept having these miscarriages and the docs are doing all the standard tests and can't figure out what the problem is. My boss at the time told me about a friend of hers who had similiar problems and then they discovered she had this clotting problem, was put on blood thinners and had a baby. Now, all my docs already knew that I had developed a blood clot in my legs a few years earlier when I was on birth control pills (I can't ever take estrogen...very dangerous). So why did none of these doctors ever think to check me for it? I had to suggest it to my doc and low and behold...there it was. Not the exact same thing as my bosses friend but very similiar. Doc tors can be so stupid....like what you said about your docs not believing that you bled for 3 years. How and when were you diagnosed?

So your condition is similiar to hemophylia but you are not actually a hymophyliac? Is that correct?

Lady-

Wow, what a story!! Sounds like other's I have heard that have blood disorders. Doctors think we're brain-dead half the time, I think. Did getting treated for your blood disorder ever help you with the trying for a baby thing? Or was that pretty disappointing, too?

I was diagnosed in January this year. My then 5 year-old was have a lot of nose bleeds. They could happen even a few times in one single day, lasting anywhere from 20 minutes to 1.5 hours. And he'd had them since he was about 2. Every time I took him (to different doctors, even), they always told me to use vaseline or sprays to moisten it. All that, plus using a humidifier didn't even phase them.

Then one day while I was at work, while my mom was watching him after kindergarten, he has another nose bleed. She called me at work (which means something's really wrong!! http://www.healthboards.com/ubb/frown.gif ) and tells me it's been almost 1.5 hours and it won't stop, so she's off to our doc.

He wasn't in that day (which turned out to be a blessing) so she saw his partner. He said anything over 15-20 minutes is never normal, and said to see our pediatrician, who then referred us to a pediatric hemotologist.

I insisted on going with him to the doctor 300 km's away, and so did my hubby. In January, they tested him, and after talking to me very casually, the doctor insisted I be tested, too. The results came back in different batches, and eventually, we found out that he probably doesn't have anything, but I definately have von Willebrand's.

So that's how we got here! Long story, huh? And the moronic doctors kept saying I was exagerrating, or looked at me like I was crazy!! Sheesh!!!!! http://www.healthboards.com/ubb/frown.gif http://www.healthboards.com/ubb/frown.gif

I was not and am not treated for my condition....if I had tried getting pregnant again then I would have had to give myself blood thinner injections during the pregnancy. But I have some other health problems so my husband and I decided to stop trying and I got my tubes tied a few months ago.

Hi I too have found out recently that I have von Willibrands. I went to the Gyno for heavy periods and this was one of the things he tested for. Unfortunately I am finding the whole thing a pain in the butt. During my life I have had numerous operations for various things and have had no trouble with bleeding. Now that I have been diagnosed I have to mention it everytime I have surgery, I have to have an infusion of a drug called ddapp(i think) at least an hour b4 surgery. The other day I had a curette and had to go through this, unfortunately the staff did not take blood after the drip had run through so now I have to have a test run b4 another op that I have to have to check my levels. They say that I will then have aplastic card to keep in my purse for future reference. I have been told that mine is the mildest form, I do bleed longer if I cut myself but I would not say that I bruise easy. I have three children and didn't have any trouble carrying them.

Hi hotwheels,

I am sorry you are finding this to be such a pain in the butt. I guess for some it's a relief, and for others, a nuisance. The injection you had before surgery was DDAVP. The reason you have to always tell them and carry the card is because you may someday have hemorraging after surgery or a car accident. Many von Willebrand's have no trouble for years, and then one operation that they weren't expecting or one monthly period may be very dangerous. At least this way, if that happens, they know how to help you, maybe even save your life!

You mentioned finding out because of your heavy periods. What course of treatment are they looking at to help with that? At least that will be one good thing for you to *maybe* look forward to. http://www.healthboards.com/ubb/smile.gif

How old are you? And are you considering having your children tested?

Wishing you the best of luck,
Kendra http://www.healthboards.com/ubb/smile.gif http://www.healthboards.com/ubb/smile.gif

Hi, I was diagnosed with won willabrands about 4 years ago. As a teenager I always had very heavy periods. Heavy clotting and changing my pad every 15 to 20 minutes. My doctor thought it was strange because she said that sort of bleeding happened only after miscarrages. I assured her I was not pregnant. I went to see many doctors then they found I had endometriousis. I had many surgery's because of this system and my bleeding never changed. I bruised very easily. Once I got married at 21 my doctor told me try to get pregnant because with my system they would want to do a hytroectemy (?). We tried after 4 months of getting married and it definitely was not in our plans. We thought we were to young to start a family. Well I'm glad we started when we did because it took us 5 years to get pregnant and we had to go to a fertility clinic to get pregnant. After my pregnancy, I was okey for about 2 years. My periods were heavy, butI could change every 45 minutes. After my son was 2 all my problems started and worse. I was losing so much blood through my periods. They were lasting 7 to 10 days, changing every 10 minutes, felt faint and weak all the time. By the time I felt a little better my period would start all over again. After several tests with a Blood Specialist at Mount Sinai Hospital (they originally thought I had leukimia) I was diagnossed with von williabrands. My periods were getting unbearable pain on top of the bleeding so they tried this DDVAP drip on me to see if it made any sort of difference. That particular month that I tried it actually my period was worse then any other month. They then decided to send me to another specialist regarding my periods. He said to me that they have a new procedure that they could burn my liner. The procedure could either take my periods away completely, or let me have a period with very little bleeding or not work at all and I would have to do the surgery over again. I would still have my ovaries but if my period would not return then I would never have children again. He thought it would be best to try to have another child and then have the surgey. My husband and I thought about it and thought we havent been on any birth control since our son was born and I never got pregnant, which would mean we would have to go to the fertility clinic. The waiting list was to long and I was getting weaker and weaker as each period came and went. I went through the surgery. I never got my period back again. I feel great but still bruise very easily. My son once he is around 10 they will test him to see if he has von willabrands but there are no signs right now showing he has it.

Take care and talk to you soon.



------------------

Hi Kendra, I have not been on the boards for a while.
In 2 weeks I have to go back to my gyno to get the results of my d & c. He has sent me a letter saying that I have a large utherus and that could be why I have heavy periods, although this has not always been the case. He did mention hysterectomy in the letter which I don't want to have or on aprevious visit he mentioned a progesterone coil that shrivels up the womb over time, I don't want that either as I am 37 years old and don't react well to hormones(weight gain from depro provera 7 years ago). I have also heard of having the lining burnt to stop periods but this was not by this gyno. So I will have to see what he says next visit.
2 weeks after the d&c my periods where due and I had hoped I would not get them, but I did and apart from the first 2 days being very light they were very heavy again, lasting about 7 days.
Thank you for your reply and I will post what the gyno suggests to me.

Hey all!!
I was just wondering in your circumstance if your white blood cell count has been effected by this? If so and how? this could be useful in knowing for a friend in need.

hey,
i am a student and i am doing a research paper on hemophilia. if any of you could e-mail about your disease, because it woudl be really helpful to me if i could interview you about your disease. my email is Krissydoll126@hotmail.com

Hi, I'm a senior in high school and i'm interested in finding information about Von Willebrands disease, my mother has it and I suspect i have it and want to be tested and i'm also doing a research project for a school project about this disease/disorder if anyone could give me information about this i would greatly appreciate it. my e-mail is blue_eyes_on_her@yahoo.com e-mail me if you can.

*Josh*