Okay so I have been a member of this group for some time and have never posted anything due to how depressing this subject is to me. I am 25 years old. I grew up as only child with my single mother and my grandparents being my legal guardians. As a kid I would get frequent nose bleeds and would experience prolonged bleeding after teeth extractions. After course this was just simply brushed off as nothing serious. Then at age 9.5 I started my menses. Right away I was taken to a gyn and was put on Ortho Tricyclic to regulate my cycle. Not to sure what happened with all that I just remembered always being at the nurses office during class time sitting on a chair with a heating pad. I had to always have an extra set of clothes at the nurses office incase I would stain which happened a lot. I would get picked on by the boys who would sneak through my backpack and find pads. It was very embarrassing to of my life being only girl to be on her menses at that age. Things started getting worse. 2 months before my 13th bday I started my period. Lasted up til my birthday. During that time my mother was so busy working she hadn’t noticed I had been bleeding heavily for that long. I began to look pale and began to feel really bad heart palpitations. My coach thought I would complain about doing exercises due to weight gain from pills but I was actually feeling weak and my heart felt like it was ready to jump out whenever I would exert myself. Finally I was rushed to the hospital where mother worked as a ultrasound tech and was admitted. I had blood work results showing my hemoglobin was at a 2.0 range. My first transfusion was given. A pediatric oncologist began tests and suspected von willebrands. I’m bot sure what happened but my mother stopped taking me to see that doctor. I began seeing a different. GYN and was rendered to a hematologist after abnormal blood work at my PCP. For several years I experienced prolonged heavy menstrual cycles. My Gyn would constantly put me on different birth control methods. My hematologist appointments consisted of in and out visits. I was miserable. Missed school a lot and going into adult hood was depressing. I felt like it wasn’t normal but I just didn’t have answers as to why I would go through that. Why my mother never did more to find out if there was something that could be done to make my life less stressful is still unknown to me. I can’t help but to blame her for where I am now I currently currently laying in a hospital bed with an ivy hooked up. I just received 2 units of blood. I have been bleeding for 3 months. Where I live von willebrands is unknown. I have scheduled appointment with a so called great hematologist in Houston, TX. I’m desperate in finding out what’s really going on and what can be done to manage my life a better way. I am tired of always feeling so tired. I am tired of feeling so miserable during my menses. I have miscarried more than once. I was diagnosed recent with PCOS and my former Gyn suspected Endometriosis. Right before deciding to come to the ER for the second time in last week I broke down crying. I feel alone in this. I’m praying i can start finding answers soon. After several close calls in needing a blood transfusion after my first in 2002 I end up needing one now. Your input, advise and words of encouragement are greatly appreciated. I apologize for such long post but I tried to sum up everything without writing a novel. 
:(. So sorry you are feeling this way. If it makes you feel any less alone in this unfortunately your story is actually pretty familiar for a lot of women with VWD. There is a VWD and Women’s Issues Group you can join on this site if you want to discuss your issues in a closed group. I’m glad you are able to see a new hematologist and on the road to getting answers.
I am so sorry to see how long and hard your journey has been. I know you aren't close you a HEMOC Unit, but if you can make appointments, they can certainly help you through a number of issues. One of them being emotional support and help.
I'll be holding you up in healing thoughts
I so sorry also that you're feeling this anxiety and stress. Just know there are many of us with VWD and we at times feel the same. Try to find a good, qualified hematologist that you can talk to, or investigate if in your area there is even a state hemophelia group that can provide support. Hang in there but know that it's perfectly normal to be scared.
Hi kda1989 - I just want you to know that I get you. I've been feeling really alone as well. I think the worst of it is feeling alone even when I go to the doctor's office, as I go to them in horrible pain and bleeding that keeps me constantly going in for infusions and transfusions, and they shrug their shoulders at the idea of what the problem might be. It makes me feel crazy, wonder if I'm being a big baby about it all, but after the tears I remembered: I'm a pretty strong chick. I've been through a lot in life and have never had to deal with as horrendous of pain as I have this last year.
I was feeling depressed but now I realize it might not be me, it might be these doctors that have been treating me like a guinea pig for the last year. I now have a fire in me to find a doctor willing to find answers. I don't know if my issues are the same as yours, but I'll be sharing any information I can to the group because this is no way to live. I remember what having a life was like and will be damned if I let the limitations of a doctor or two keep me from getting back there.
I've broken down a lot over the last few months, but finding a different doctor has given me a new purpose and is bringing my spirit back up, maybe it can do the same for you.
Thank you for sharing your story. I don't know if you will ever get an answer to your Mom's issues with doctors and health.i grew up in a family like that. Last year I lost two sisters to cancer of the colon and melanoma. My mother didn't like doctors and she died of throat cancer exacerbated by alcohol abuse.My sisters never learned to seize the initiative and talk to doctors early on.
Now that I am 73 years old and diagnosed with type III vWD (acquirred by a mutation a few years ago) I and my wife are very proactive in our healthcare. We are lucky to have selected some very good Hematologist/oncologists in our rural county. I have been hospitalized numerous times with GI bleeds. The last one was probably in the small intestine and surgical or endoscopic intervention would have been very dangerous just from the procedure. It is no fun lying in a hospital bed watching your Hgb numbers go down AFTER you get units of blood. As you said, just having the need for the transfusion is at best, depressing.
My experience is that anxiety greatly influences my bleeding issues. I take anti-anxiety medicine every day. I also with my wife and two surviving children, now adults, have decided that having a good long bucket list is a great help and they encourage me in my hobbies and civic activities.Lately, I have had half a year of peace from bleeding. I wish you improvement in your condition. I am trying to learn how to play the banjo!
Depression is as much a disease as vWD and you should aggressively attack it with help from professionals. All of your doctors, especially the hematologist and gynecologist need to confer together. It sounds like each one is acting alone and that is why you aren't getting a coherent answer to your issues. Contact all the Hemophilia groups you can. They often have good advice about vWD and maybe can steer you to experienced help. Few doctors have experience with vWD, even hematologists. My guy just happened to work with the Hemophilia group at a Tampa Hospital so he has lots of experience.
So keep in touch with all of us. I bring my laptop to the hospital and spend the day keeping my mind and soul occupied. I even learned some Croat language to greet a nurse who had been born in Croatia. She got such a kick out of it. Most hospitals have wifi and can help you get connected.
Love,
John the elder
A few years ago after a big argument with my doctors I changed my diet like they wanted me to and I have had a big change in my bleeding. As uncomfortable as it makes me I eat large chunks of red meat now, almost no garlic and onions and No rice! The last there didn’t actually come from my doctors that came to me from a friend that has an almost completely opposite problem. She used to have to have blood drawn because hers was to thick and her do list was exactly my don’t list but had lots of rice as a blood thinner so that was the last thing I dropped but I don’t really have episodes anymore. Long and short food matters.
Johntheelder - you have such a touching story and I agree with your small moments and fun lessons attitude. What gets us down are the experiences we feel we're missing out on and learning the banjo and other languages are great ways to be part of something again. I'm a writer and artist, so that's where most of my energy goes, but last year I started a scrap book that I kept up on every week. I glued ticket stubs, printed pictures and threw them in, smashed in wrappers to tasty foods I tried, anything that reminded me of all the small moments that made the year great. It's nice to have and to look back to remind myself of all the good when I'm getting down. I've already begun my 2015 journey. :-)
Johntheelder said:
Thank you for sharing your story. I don't know if you will ever get an answer to your Mom's issues with doctors and health.i grew up in a family like that. Last year I lost two sisters to cancer of the colon and melanoma. My mother didn't like doctors and she died of throat cancer exacerbated by alcohol abuse.My sisters never learned to seize the initiative and talk to doctors early on.
Now that I am 73 years old and diagnosed with type III vWD (acquirred by a mutation a few years ago) I and my wife are very proactive in our healthcare. We are lucky to have selected some very good Hematologist/oncologists in our rural county. I have been hospitalized numerous times with GI bleeds. The last one was probably in the small intestine and surgical or endoscopic intervention would have been very dangerous just from the procedure. It is no fun lying in a hospital bed watching your Hgb numbers go down AFTER you get units of blood. As you said, just having the need for the transfusion is at best, depressing.
My experience is that anxiety greatly influences my bleeding issues. I take anti-anxiety medicine every day. I also with my wife and two surviving children, now adults, have decided that having a good long bucket list is a great help and they encourage me in my hobbies and civic activities.Lately, I have had half a year of peace from bleeding. I wish you improvement in your condition. I am trying to learn how to play the banjo!
Depression is as much a disease as vWD and you should aggressively attack it with help from professionals. All of your doctors, especially the hematologist and gynecologist need to confer together. It sounds like each one is acting alone and that is why you aren't getting a coherent answer to your issues. Contact all the Hemophilia groups you can. They often have good advice about vWD and maybe can steer you to experienced help. Few doctors have experience with vWD, even hematologists. My guy just happened to work with the Hemophilia group at a Tampa Hospital so he has lots of experience.
So keep in touch with all of us. I bring my laptop to the hospital and spend the day keeping my mind and soul occupied. I even learned some Croat language to greet a nurse who had been born in Croatia. She got such a kick out of it. Most hospitals have wifi and can help you get connected.
Love,
John the elder
Michele - this is very interesting! I on the other hand LOVE red meat and eat it at least 4 times a week. :-) But, I did not know about rice thinning blood. That is, well I've already said it, but interesting! You've got me curious. I'm going to look into this more.
Michele Brazelton said:
A few years ago after a big argument with my doctors I changed my diet like they wanted me to and I have had a big change in my bleeding. As uncomfortable as it makes me I eat large chunks of red meat now, almost no garlic and onions and No rice! The last there didn't actually come from my doctors that came to me from a friend that has an almost completely opposite problem. She used to have to have blood drawn because hers was to thick and her do list was exactly my don't list but had lots of rice as a blood thinner so that was the last thing I dropped but I don't really have episodes anymore. Long and short food matters.
I'm so sorry. I have acquired vwd, so I can't totally relate,but I will join you in prayer.
Munchie