Menstrual bleeding

My periods are lasting 15 days has this ever happened to anyone else idk what to do once my period ends my lips are blue and I’m so pale it’s such a drain I recently moved out of state and trying to find new doctors and they’ve all been terrible I’ve switched 4 times already and can’t seem to find a doctor that I need to have and to just listen to my problems and actually help and I can’t give up but this is so stressful and making me feel awful

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Just for clarification, what type of doctor(s) have you been seeing about your problem? Are you only going from gynecologist to gynecologist or have been trying to find a new hematologist? You need to have a good hematologist and a gynecologist that will adhere to his/her recommendations. Gynecologists tend to under-react to bleeding complications due to VWD because they are so used to treating bleeding complications due to BC pills, problems with pregnancy, etc… and women who freak out over every little bleeding event that isn’t “normal” for them. They, also, think VWD menstrual bleeding can be fixed with BC pills, so the problem can go on for a long time before you find a BCP that works for you. If that doesn’t fix it, they will throw up their hands and tell you your only other option is a hysterectomy. A hematologist may recommend a DDAVP treatment or other clotting factor treatment (if that will work for your type of VWD) to control the long bleeds. As well, if your lips are blue and you are tired and pale, you may need to have an iron infusion or blood transfusion. Your iron levels sound like they are tanked out and perhaps your blood pressure is low. Can you share what state you are living in now? Maybe other members can make Doctor recommendations for your area?

Hi, I concur with VWDgirl’s answer. The most important thing you can do is to first see a Hematologist. They can run the necessary blood work to see exactly what you are facing, it could turn out to be something else entirely. You will need to see a Gynecologist in conjunction with the Hematologist to find out what course of action is needed. I’ve been going through this with my daughter for 5 years and we started out in much the same way you did. What I’ve outlined above is the only way we found to manage VWD…the Hematologist and OBGYN need to work hand in hand. Additionally, there are sub specialties of both aforementioned Physicians. We were lucky enough to find Doctors who specialize in Von Willebrand’s. After years of searching this is where we found our answers.

hi I have vwd an I used to lose to much blood I needed 6 blood transfusions but now I’m on a pill called transmedic acid an it is good.u can take it when u start ur period an in a few days it slows blood right down.i have been on it for years now an I love it.the doc tried everything an nothing worked til he gave me this pill.u should talk to a doc about it an get on it before ur next period starts.u wont be sorry an its not that good luck an hope this helps u the way it helped me

There was a great site launched today called ‘Women who bleed’ about others with VWD. It is also well worth a look: