(long post) History of heavy periods? Check for von willenbrand disease

Hi everyone, I wanted to share my story. PLEASE READ if you have a history of heavy periods. I also have PCOS. Since I was 18 years old doctors kept trying to treat me for severe menorrhagia - a complication of PCOS. Doctors suggested that I get a Hysterectomy. What was strange is that when they checked my uterus after a history of 4 D&Cs... they could find nothing that would cause such bleeding. For years, I did BC's, provera and injections but without success. After getting 2nd opinions from up to 5 gyn/endocrinolgists, something happened that changed my life. Well, doctor #4 was finally getting frustrustrated and she ran out of treatments. It was the usual... call her if I couldnt stop bleeding and she would say...okay... I will meet you at the emergency room. My husband was tired of it and was like... no. She is only going to the D&C again and put you back on those pills. She's not treating the real problem. She is only treating the symptoms. There is something going on and she doesnt know what it is. So, instead of meeting the dr at the hospital... I called my family doctor for help. He found another gyn/endocrinologist that could take me in his office that same day. The nurse called me on my cell phone and told me to come in now. (His office was also attached to the hospital) I explained my long medical history of bleeding and he asked me a strange question. He asked me, "Have you ever been tested for Von Willenbrand's Disease?" I said no... by the way.. what is that? I never heard of it. He told me that it is a bleeding disorder. It is not hemophilia but somewhat similiar. He asked me if doctors 1 - 4 ever tested me before. I said no. He was outraged. He said, "given your menstrual bleeding history... you should have been tested for this years ago! There is no excuse for this." . He sounded like he was going to whup their butt! *It's frustrating... most doctors today try to treat everyone like you are simply a textbook case! It's all about the Benjamins. The test: **It is a specific test (8 panel) test. It is not a routine test your doctor can order at their office. The doctor should know if they plan to test you for it... you have to be sent to a hemotologist. The blood specimen has to be frozen and sent off.) ** He admitted me in the hospital and put me on a medication thru my IV- the bleeding stopped within minutes. I cant remember the name of the drug at the moment ... but he said it is commonly used for menstrual bleeding and it was not provera. If anyone needs to know... I can find the name. The hospital did a 6 panel test for von willenbrand. The test came back suggesting that I may have Von Willenbrand. So, I was referred to a hematologist for further testing (8 panel test). It was confirmed that I had Von Willenbrand's disease- Type 1. It was explained to me that nearly 50% of women with heavy menstrual bleeding ... may also have von willenbrand's disease. Some doctors state that you would display other symptoms like bruising, nose bleeds, and slow clotting with minor cuts but I did not. In fact, my hematologist stated that many women do not show any symptoms except for heavy menstrual bleeding! I am glad I found my new doctor because he found root cause. It explained why I didnt respond very well to the drugs that were commonly used for PCOS. He helped to prevent a hysterectomy that would not have been necessary. My doctor Von willenbrand is hereditary. Usually I am lurker but I couldnt help reading other posts that mentioned very heavy cycles similar to my own. I can say that since my weight loss surgery... the cycles dramatically improved. I hope this helps. Warm regards, JH

Thanks for the info. I have been on Provera and it has slowed me down so far but if it stops working I know I have this info to fall back on. Thanks!! Brigitte