I just joined this site in hope to get support and give support to other parents/patients with VWD. My daughter was diagnosed at age 12 with type 1. For the last 3 1/2 years we have gone to many hematology and GYN aptt's trying find a method to control her prolonged menstrual cycle. We have gone from hormonal pills, to birth control pills of many different kids, amicar, stimulate, and now she's on the seasonal pill which is suppose to allow her to have her period only 4 times a year, yet she's bleeding every single day including blood clots. Yesterday we were back at the doctors office in which he now is recommending the IUD Mirena to control her bleeding. I really cant imagine what my child is going thru with this prolonged bleeding. It seems like her peiod never goes away. I have mixed feelings about inserting an IUD in a girl that's only 15 years old. The hematologist is saying its not a big deal and there are no health risk. It's totally safe. But they are unsure, if it will even work but was wondering if anyone else has faced this issue with a teen daughter. Am I being too paranoid? I would appreciate if someone can put me at ease a bit. Has anyone else been thru this? I don't know anyone who has VWD or a has a child that has VWD. I hope maybe someone else read this and help me out. Thank you .
I'm so sorry to hear about your daughter- I don't have a lot of helpful information to share, but I definitely can empathize. I was diagnosed with type 1 VWD a few years ago, but only after having my 3rd child and hemorrhaging quite seriously (it's taken 3 years to recover fully!!!). It's frustrating to me that there aren't better options for helping the monthly bleeding issue since they know exactly what we're missing from our clotting factors. I suppose it's just another area that needs more research done. I'm assuming you've tried stimate- the nasal spray? I was really hoping that would work for me (even though it's crazy expensive!!), but it made me feel horrible- and it didn't really help me that much with the bleeding. However, my sister has VWD too and tried it, and got great results. So- it does work for some! I have also considered the IUD, but for me, I have been on 2 or 3 different birth control pills and I HATED the way I felt when I was on them, so I was too scared to try something else that put hormones in my body. My options right now are to either try the IUD or get a hysterectomy and be done with it, though obviously that's an option for me only because I've already had babies. I'm sorry not to have more helpful information but I can completely relate with how difficult it is to come up with good options for menstruation and VWD. Best of luck to you.
I’m sorry your daughter has to deal with this. I went through the same thing as a teenager but unfortunately I my VWD was not diagnosed until I was well into adulthood so I just had to “deal with it” on my own. Birth control pills put me in a place where I could function, although bleeding was still really long and heavy. It wasn’t until I had a miscarriage that I went into a cycle that would just not stop. I was bleeding everyday for months with heavy clotting. OBGYN tried various higher dose progesterone BCPs but none worked (IUD was not suggested). When I started getting really weak I asked to have my iron levels checked. They came back as 10.5 (normal is 12-16). According to the GYN that was OK and only slightly anemic. He said they see it all the time as most women are slightly anemic due to menstration. I was convinced it was a problem so I went to the hematologist. He said it was DEFINITLY a problem for women with VWD and that most GYN don’t realize the seriousness of lowered iron levels in women with VWD because low Fe levels compound the problem. He sent me for an immediate IV Ferritin infusion ( taking Fe pill supplements doesn’t cut it) and an IV infusion of desmopressin. Within a 48 hours I finally stopped bleeding and within a couple of months my periods were " reset" to normal where I could control them with a new BCP. I would strongly suggest your daughter get her iron levels checked. If she’s bleeding that much than she’s losing a lot of iron, probably much more than she could possibly get from her diet and OTC supplements. It may not fix her problem entirely. I have also taking progesterone shots and lupron which stopped my period but I don’t know if they are recommended for someone of such a young age or for long term treatment. I hope you are able to find some information that helps. I wish I had a resource like this site when I was going through everything. Finding information, even from doctors, can be so frustrating. I have learn so much just by going through it by trial and error. I promised myself I would share everything I learned from my experiences in the hopes that no one would have to feel like they were going through it alone. Good luck to you both.
Hi there and welcome! I too have a daughter with a long history of prolonged periods due to VWD and she has suffered tremendously because of it. She has also been on every type of birth control including the Mirena which you mentioned. My daughter had it inserted at age 14. The procedure went very quickly and according to my daughter it only hurt for a few minutes. That being said it did not work for her at all. After this attempt to help her failed she was approved by the insurance company for Stimate nasal spray. They made us try everything else for her before they would approve it. We were sure that this was the "silver bullet" that would end her problems...again not so. However, she now at age 15 uses Stimate in conjunction with Tranexamic Acid to control the bleeding. She also takes Celebrex which helps with unbearable pain associated with her periods. This has cut her periods down to 5 to 7 days which is a miracle. Sometimes her bleeding will stop and start but the duration has changed dramatically and she is pain free with Celebrex. She was also a child with periods that seemed to last forever. She once bled for over 100 days and required hospitalization. After we were approved for the Stimate I requested to have the Mirena removed. I was advised that this could start a heavy bleed but it did not and my daughter said the removal was painless. It was a very hard decision to have the Mirena inserted and an even harder one to have it removed. I don't think that you're being too paranoid at all. These are little girls after all not grown women and making choices like this for them is unbelievably tough. It's horrible to be in our situation, you're basically being asked to experiment with your child. Unfortunately experimentation was the only way out of this mess for us. I know my daughters problems are far from over but at least we have gained control of the situation for the time being. I'll say a prayer that if you choose to try the Mirena that it works perfectly. I know that it does wonders for some girls. Stay strong and if you need any advice just let me know. Take Care!
I sure understand your pain. My daughter is 14 and has VWD type II. Stimate nasal spray does not work for her and we are trained to administer Humate P at home. Period was a big issue and Humate P was
I know the Mirena has worked for many women, probably harder for young girls because their bodies are trying to regulate themselves and it's hard enough without a bleeding disorder. Humate is expensive and a struggle to get OK'd by insurance. I wouldn't discourage you from trying the Mirena, it may help. The vWD is the primary thing but seeing a naturopath in conjuction with all this might be helpful as long as they understand the bleeding disorder. Good luck, you'll both be OK!
Helpful but period bleeding was still an issue. We tried several type of hormone and finally Aygestin, 10 mg a day gave us a year that she had no period. This summer her period came back, We had to increase the dosage but the period was still on and off. We then went off the bill and used factor infusion to control her period. We got off the hormone for four days (re-set) and now we go back to Aygestin pill. It seems to work for now but it is a very much wait and see situation. We have administered many Humate p infusions at home lately and thankfully, we are coping it as well as we can. I hate for her to have to take the hormone pills to stop her period from coming. Unfortunately, there is no better option right now.
I want to mention a possibility for those who are older and already have kids. I have a condition called Asherman’s syndrome. It was caused by a D&c following a postpartum hemorrhaging. My uterus is scarred and I have very light period ever since. It caused problem trying to get pregnant with my second child but specialist removed the scarred tissue and I was able to get pregnant with my daughter. I don’t have any other problem, just very very light period which works great for me. I think some procedures along this kind of thinking may work for those who no longer desire to have more children. I have VWD type one and this resolves my period bleeding issue for good.
Thank you everyone for responding. It's definitely an area that needs more research. I cannot imagine what my daughter and every woman with this issue is going thru. Your answers are supportive and hopefully there's something out there that will work for her. God bless you all.
Vicky and all who replied..... thank you all for such detailed responses. There are many, if not most, recent members who have joined this site either suffering from prolonged period issues or with daughters who are suffering.
I am a type III, acquired von Willebrands, and have been blessed with good Hematologists. There is a test for measuring the effectiveness of Stimate (Desmopressin) in controlling bleeding by us. The test consists of a blood draw just before administering Desmopressin (draw one) and another blood draw exactly two hours later, (draw two). Both draw one and draw two are tested for VWF factor. The second test should show a large increase in VWF factor in the blood if Desmopressin (Stimate) is effective. In my case, my levels went from less than 5% to between 15% and 20%. I am classified as a "non-responder". If Stimate is going to work for you then your levels should go up towards normal levels much more than my 20% levels. It is a simple test and should help the insurance companies go for P.humate or Alphanate infusions.
Another problem for us is "inhibitors". If you have acquired vWD, like me, your immune system may produce antibody chemicals which attack VWF factor and Factor VIII in p.Humate or Alphanate. A "non-responder" like me, probably has inhibitors. I was given a second test where my blood was mixed with "normal blood" and then divided into two samples. The first was tested for APTT immediately and the second incubated at body temperature for a period of time before testing for APTT again. The first sample in my case tested OK for APTT as the normal blood had clotting factors present. The second test showed an increased APTT time beyond the reference range showing that something in my blood had destroyed the clotting factors in the "normal blood". This test is often called a "mixing test" and checks for the presence of inhibitors which take time to act, hence the incubation time. For me, Factor infusions, like p.Humate and Alphanate don't work that well because my immune system fights them. IVIG infusion of immunoglobulin proteins, overwhelms my inhibitors and allows clotting to take place.
Some people develop immune system antibodies after infusions of blood and blood products, so we don't stay the same as time goes on and the Hematologists have to know our transfusion history as our chemistry changes.
A further note to tell the Hematologist and Emergency room people: PRBC (packed-red-blood-cells) is preserved with Heparin, an anticoagulant drug that suppresses clot formation and is often given patients to replace lost blood. Apherized blood contains much less Heparin and you should insist on it when you need blood as the PRBC will only add to your bleeding problem.
Keep changing Hematologists until you find a good one. They exist. Mine worked in a Hemophilia Clinic for a while.
Thanks again, all you members, for your participation!!
Good luck!
John the elder - no GI bleeds for more than a year!!!!
Vicky, I am so sorry to hear about your daughter’s difficulties w VWD. I too struggled with this problem ( have type 1, atypical). I was never able too resolve the problem. Having a hysterectomy at 28 was great relief for me. I wish I could give you some helpful treatment stratagies, but the previous contributors have said all that I know. My point in replying is to praise you for your empathy and concern for your daughter. The pain and discomfort, wondering when it will stop is very difficult. Plus, as a cheerleader in high school having to sit out activities and explaining to friends why, was hard to deal w at that age. You are the one person, other than her hemotologist that can give her the understanding and support she needs. I am so glad that she has a supportive parent. I wish you both the best.
Vicky, sorry to hear about your daughter. Having vwd is tough, but being a teenage girl with vwd is even more tough. I feel for her. I was that girl and as I’m finding out through this website - everyone bleeds differently with vwd. So her experience may be different then what I went through – but I can give you some insight into that for some reassurances. As a Type 2b vwd I had the same horrific and embarrassing bleeding issues as a teen. Lots of ruined pants and sheets from heavy bleeding, I always carried a change of clothes with me – just in case. I can say though, as I got to college – it got much better and birth control actually started to help, unlike in HS. I also didn’t know I had vwd until I was 30, and thought all of this was normal because I was too shy to talk to my friends about it and my mom had the same issues as me when she was young. Nobody ever checked either of us. Since then, I have been on birth control pills of all sorts and now that I have two beautiful children and am pushing 40, I recently got the IUD. As an adult, it’s great. Initially, not so much because it does cause some infrequent and heavy bleeding the first 3 months, but after that – great. It’s a bit uncomfortable when inserted (I won’t lie), and I did experience cramping as well for about two weeks after. Since then, I’ve hardly had any bleeding, but my bleeding issues have been pretty limited over the last 5 or so years, in general. The pamphlet for the IUD says it’s for women who have had a children, so maybe question the doctors as to what that would do to your daughter’s reproductive system in the future? That would be my only concern. Also, is your daughter taking iron supplements? I used to find that if I was anemic, I would bleed more. Not sure if there was some scientific correlation or just a mental thing, but that seemed to help me a little. My daughter is only 14 months old, and she was diagnosed with vwd, as well as my 3 1/2 year son. So I am trying to mentally prepare myself for what to expect in both their futures, so thank you for your question and everyone’s answers because I know I may have similar in the future.
Thank you so much for responding. Everyone has been so supportive and it helps to know that we are not alone during this journey. She does not take iron supplement because her iron is fine. It amazes me how she's never low in iron with the amount of blood loss. But thank God, she's ok with that. I'm sorry to hear about your children, its definitely been difficult to see my child experience these issues. She gets very stressed out with all the bleeding and it seems to never end. She started her menstruation at age 10 and right from the beginning she has dealt with this issue. We have another scheduled appointment with the GYN doc to see what next. Hopefully, we will find something that works for her, I just pray that we can find it really soon. Thank you again for your comments and sharing your story. very much appreciated and needed.
God bless.
Meredith said:
Vicky, sorry to hear about your daughter. Having vwd is tough, but being a teenage girl with vwd is even more tough. I feel for her. I was that girl and as I’m finding out through this website - everyone bleeds differently with vwd. So her experience may be different then what I went through – but I can give you some insight into that for some reassurances. As a Type 2b vwd I had the same horrific and embarrassing bleeding issues as a teen. Lots of ruined pants and sheets from heavy bleeding, I always carried a change of clothes with me – just in case. I can say though, as I got to college – it got much better and birth control actually started to help, unlike in HS. I also didn’t know I had vwd until I was 30, and thought all of this was normal because I was too shy to talk to my friends about it and my mom had the same issues as me when she was young. Nobody ever checked either of us. Since then, I have been on birth control pills of all sorts and now that I have two beautiful children and am pushing 40, I recently got the IUD. As an adult, it’s great. Initially, not so much because it does cause some infrequent and heavy bleeding the first 3 months, but after that – great. It’s a bit uncomfortable when inserted (I won’t lie), and I did experience cramping as well for about two weeks after. Since then, I’ve hardly had any bleeding, but my bleeding issues have been pretty limited over the last 5 or so years, in general. The pamphlet for the IUD says it’s for women who have had a children, so maybe question the doctors as to what that would do to your daughter’s reproductive system in the future? That would be my only concern. Also, is your daughter taking iron supplements? I used to find that if I was anemic, I would bleed more. Not sure if there was some scientific correlation or just a mental thing, but that seemed to help me a little. My daughter is only 14 months old, and she was diagnosed with vwd, as well as my 3 1/2 year son. So I am trying to mentally prepare myself for what to expect in both their futures, so thank you for your question and everyone’s answers because I know I may have similar in the future.
Thank you so much for responding and sharing your story and your daughters. Who prescribed the Aygestin meds? Was it the GYN, hematologist? Just curious because I seem to go back and forth between the two doc's in regards to the bleeding issue VWD related or not. Its been very difficult to see my child go through this discomfort and horrific bleeding experiences. I have an older daughter and she's ok, and no one in my family has been diagnosed with VWD. So it has been a learning and researching process for both of us. Thank you again for sharing. God bless.
May said:
Helpful but period bleeding was still an issue. We tried several type of hormone and finally Aygestin, 10 mg a day gave us a year that she had no period. This summer her period came back, We had to increase the dosage but the period was still on and off. We then went off the bill and used factor infusion to control her period. We got off the hormone for four days (re-set) and now we go back to Aygestin pill. It seems to work for now but it is a very much wait and see situation. We have administered many Humate p infusions at home lately and thankfully, we are coping it as well as we can. I hate for her to have to take the hormone pills to stop her period from coming. Unfortunately, there is no better option right now. I want to mention a possibility for those who are older and already have kids. I have a condition called Asherman's syndrome. It was caused by a D&c following a postpartum hemorrhaging. My uterus is scarred and I have very light period ever since. It caused problem trying to get pregnant with my second child but specialist removed the scarred tissue and I was able to get pregnant with my daughter. I don't have any other problem, just very very light period which works great for me. I think some procedures along this kind of thinking may work for those who no longer desire to have more children. I have VWD type one and this resolves my period bleeding issue for good.
I'm so sorry to hear that there are others going through this and hope that much more medical research goes into VWD for girls who are suffering in this way...
Your daughter's story is almost identical to my own daughter. She also started her period at 12 and it has been a nightmare ever since. She was dianosed with Type 1 but her symptoms are so bad! She is also now 15, almost 16. Her quality of life and her happiness have been destroyed by her never ending, painful periods. She is fatigued and feeling low all the time and her periods are so heavy and painful (even on the pill!). Her iron levels are always low too and we always need to keep an eye on them.
We are also at our wit's end trying to figure out what is best for her at such a young age. I worry constantly about any permanent effects being on the pill for so long might have. We have also considered getting her an IUD or Implanon, but are also not sure if she is too young. I often feel like the doctors are all just clutching at straws and guessing what to do as nothing is working so far.
Her hematologist is no help at all and until she turns sixteen, he is the only pediatric hematologist she can see in Perth (Australia). We are counting down the days until January when she has her birthday so that she can see someone else.
Nobody else seems to 'get it', which is so frustrating. Please keep us informed about how everything goes for your daughter.