When I was 16 years old I was diagnosed with von Willebrand’s disease. It was Valentine’s Day and I was walking to work when a huge blood clot came out of my genital area, almost as if I had given birth in the middle of the street. I remember being extremely confused. I usually had painful menstrual cramps, but I had never experienced anything like this. Bystanders were concerned and wanted to call an ambulance, but I was right by my job so I went to work and cleaned myself up. Then I called my mother and told her what had happened - funnily enough, it felt important to assure her I was still a virgin! She was very worried and arranged an emergency visit to my pediatric doctor. This kind of bleeding did not run in our family so my mother really did not understand what was going on. We were anxious for an explanation.
My doctor set me up for a bunch of bloodwork and a special blood panel. When the results came back she had another doctor with her who explained that I had von Willebrand disease type one and would need to be treated by a special hematologist to learn how to deal with this disorder. Of course I was scared. I started to think about my life prior to that day: I got my period when I was 11 years old and every month during my menstrual cycle I was sent home from school crying in pain. I always had frequent nosebleeds and mouth bleeds and was regularly passing out in school. The signs were all there but no one considered that I might have a bleeding disorder. We had never questioned anyone about my difficulties. When I was told that I had vWD, they said that it was a rare genetic Hispanic disorder. I know now that statement was very untrue.
Once I found a good hematologist and everyone was aware of my disorder, life became a little bit easier. But there was still a long journey ahead. I’m now 25 and have had both nostrils cauterized to control my nose bleeds, but my menstrual cycle continues to be the most challenging part of my blood disorder. I bleed to the point that I have to wear diapers and often avoid leaving the house. It’s been incredibly difficult to find a solution. I have seen multiple hematologists, regular and high risk GYNs and no one has been able to help. I’ve been on oral contraceptives and tried an IUD (that didn’t go well), but nothing lessens the pain or severity. I even went off my contraceptives because they didn’t seem to be helping, but that put me in an ambulance screaming for help like I was in labor. Finally, my doctor presented me with a very difficult choice: I either needed to get pregnant or I should consider a hysterectomy. He said if I didn’t make a decision within a year and a half, I might lose the opportunity of having a child.
At the time, I was (and still am) engaged, but my fiance and I were in a rough patch. It was incredibly difficult to start talking about having a child when we were still figuring out our relationship. I saw a fertility doctor who had worked with many women with vWD, and he told me I could have a pregnancy without complications if I followed his six steps. When I told this to my fiance he didn't respond well. He was scared, unsure and shocked all at the same time. He couldn't understand why pregnancy was the only solution and wanted me to see more doctors, get more opinions. But I was tired of doctors and I felt ready to have a child. I fell into a depression, feeling alone and helpless. I started to wonder whether to end the engagement, not only for myself but for my fiance as well.
That's when I started to look for help in different ways. I started to connect with the New York City Hemophilia Chapter and got more information on pregnancy and hysterectomies. I got a better understanding of why pregnancy was the best option, and I did my best to communicate that to my fiance. Finally, he understood the situation and we are now working towards having a child.
Being faced with these two options was harder on me and my relationship than I ever could have imagined. Ultimately, I had to listen to myself and gain a greater understanding so that I could communicate clearly with my fiance and get on the same page. There is a lot to learn from outside sources but now I trust myself above all others because no one knows my pain, my bleeding, or my current situation better than I do.