Definitely local Haemophilia Groups and https://www.facebook.com/groups/vWtype3/?ref=ts&fref=ts
and : http://mygirlsblood.org/
x
I know this conversation stopped a while ago. But just found this site and figured I'd add my thoughts. Personally I find that the biggest problem isn't just bleeding its the speed! It makes me think of diaper commercials where they show how FAST the diapers absorb...pad and tampon commercials sure don't show that. Honestly, I started using super /ultra tampons simply because they seemed to absorb faster and pads would just send blood travelling in whatever direction causing stains and embarrassing moments. I gradually shifted to wearing mostly black because of this. I only have black knickers. Well there are a few different colors out there but not that I've worn for some time.
Bed time sometimes means sleeping on a dark towel just in case of a leak. Go splurge and buy a super soft one so its not so uncomfortable....better than the uncomfortable plastic.
I find that cold water with a lot of salt gets blood out. I know its frustrating for moms but I have to say...the worst thing anyone can do is to make me feel bad about something I cannot control and which I find embarrassing.
I agree with the above comment about it being difficult enough.
Thank you so much everyone for your advice. It helps my 12 year old to know that other people are dealing with the same issues that she has to deal with.
I know just what your talking about I started when I was 12 and I am 15 now I didn't know anything could help with the bleeding what is the shot called? I get them so bad every 18 days for 7 to 10 days and I feel so light headed and get really bad clot things. Does the shot help? because I need to find somthing!
It's called Depo Provera x
Kika,
If you want to PM me, I'm more than happy to give you my email address if your daughter wants to directly contact me. I know I would've loved to have talked to someone who *really* understood when I was going through the worst of my bleeding so I'm really happy to help.
Kika said:
Thank you so much everyone for your advice. It helps my 12 year old to know that other people are dealing with the same issues that she has to deal with.
Ally - do you have a haemotologist? If not, you need one. My GP was/is fantastic with my bleeding problems, mostly because she's smart enough to know she doesn't know everything, and always refers me on to specialists to check everything is being done properly. Your family doctor just won't have the knowledge or experience to treat your condition in the way a haemotologist will.
My haem, not long after she diagnosed me, asked me what my ideal treatment outcomes were. I initially half joked/half serious said a hysterectomy (like they'd do that on a 16 year old!), but I then said I wanted to have some control over the bleeding, so I could still function close to normal when I was bleeding, and to have some ability to predict when the bleeding would start, as I'd missed a lot of things I'd planned on doing because of the random nature of my periods. It did take some time, some medication testing, and then a bit more time, but I more or less had that after 4 years. I managed to find a contraceptive that raises my clotting factor levels a bit, and that has made a huge difference. So a haemotologist should be able to work with you to find a treatment plan that will suit you.
ally180 said:
I know just what your talking about I started when I was 12 and I am 15 now I didn't know anything could help with the bleeding what is the shot called? I get them so bad every 18 days for 7 to 10 days and I feel so light headed and get really bad clot things. Does the shot help? because I need to find somthing!