Newly diagnosed and looking for information

Hello to all and thank you for welcoming me in to your community. I posted a question yesterday and was told to post it on the disscussion board. I had surgery in November that was not able to be completed due to severe bleeding. My surgeon sent me to a hematologist to get medical clearance before he would be willing to take me back to surgery. I have gone through extensive testing with the hematologist. He says I do have vwd and is sending me to a hemophilia clinic in Pittsburgh. I do not know which type if vwd I have. I really don’t know much about this disease. I was wondering if there is a pain aspect to this? I was told I have fibromyalgia but I’m wondering is this some of my pain condition?

In my experience (Type 3 VWD) pain with the disorder is typically caused by joint and muscle bleeds. Joint bleeds are characterized by pain, swelling, lose of motion, warm/hot to the touch where as muscle bleeds are similar to having a constant bruising without a mark on the surface, pain and swelling. The bruise usually appears after treatment. There is a secondary chronic pain caused by damage to the joints in the form of hemorrhagic arthropathy or similar which causes arthritis and lose of motion. But those types of injuries take continuous bleeds into a joint for several years.

Hope that helps

I am unable to do much physical activity because I will pay with it for severe pain for days or weeks. If I try to exercise pain is definitely in the joints and if I overdue it with cleaning or other regular life activities then I can have all over pain. I do get deep bruises that lasts months and most of the time I don’t know how I got them. I guess I have to wait to be seen at the hemophilia clinic to see which vwd I have and get more clear diagnosis. I just saw my family doctor and asked her if some of my pain could be attributed to vwd and she said absolutely not and didn’t think I even have it…even though I have gone thru the extensive testing already with hematologist. It is frustrating. I have 2 boys and of course I worry about them having this.

IMO I wouldnt put much stock in GPs or PAs. VWD requires a specialist to diagnose, manage correctly. I for one give my PA articles to read so she can stay up-to-date. The Hemophilia Clinic (HTC) will likely do some more tests to verify if you have VWD. If that turns out to be true they will diagnose what type and depending on those results they may do some before and after treatment clotting ability type tests. Luckily you can get some synthetic stuff. If all that occurs its likely your boys will get tested, hematologists especially those working with bleeding disorders like to get a history of the disorder so there maybe a chance that other family members will get tested. There are a lot of unknowns here but dont threat. Type 1 and I believe even some type 2 VWD is treatable by nasal spray, simple. The late type 2 and type 3 is treated through intravenous injections, still not that bad (you become really good with a needle and start telling the lab techs what to do when getting blood drawn). And its good to keep in mind that its not completely confirmed until your visit to the HTC so dont get worried about it.

Don’t listen to your regular doc. Most know next to nothing about bleeding disorders. The only one most learn about is hemophilia which is really weird because 1 in 50 people has some kind of bleeding disorder. In fact, if you’ve already been diagnosed with a bleeding disorder, I’d go looking for a new doc. If your doc doesn’t believe it now, she NEVER will. I wasn’t diagnosed til I was 36 and my primary and cardiologist didn’t believe it. Little to say that they totally screwed up my treatment. They made my life miserable and I’m paying the consequences for it. Now I’ve got new docs and life is getting better. My old cardio doc said I had fibromyalgia too and that my chest and body pain were all in my head. Later that very same day( I never even got out of the medical center), I ended up in the ER with my heart going from 210 to 30 and then back up and splotches everywhere on x-rays. An actual hemotologist( she was in x-ray looking at her patients’ x-rays when she saw mine)came in and reamed my docs and the ER staff. She wiped off the nitro cream, unhooked the IV bag, gave me Stimate and Amicar, the proper IV fluids, and 10 of morphine. Within 2 hours my heart was getting back to my normal and later that night the splotches were getting smaller. I was very lucky that I didn’t have a massive heart attack or stroke out because of those idiots. And yes I had a medic alert bracelet on. Going back and looking at old x-rays and CTs, you can see splotches everywhere. And on follow up ones you can see that they’re going away. The new hemo doc said the splotches were little bleeds. So in my opinion, a bleeding disorder( especially an undiagnosed one) can be related to being told you have fibromyalgia. The pain from bleeds, especially small ones, to me is much worse than from bigger bleeds. Most of the time I don’t know when I get them until they’re starting to heal and my immune system goes into overdrive trying to heal itself. Even my bigger bleeds seem to hurt worse AFTER the actual bleeding stops. As my bruises fade, they almost feel like when your foot falls asleep and it feels like it numb but swollen and burning.
Don’t worry about your kids yet. Deal with you and get you better first. Your boys(and any girls you might have, now or later) will be tested, treated, and deal with it better than we do. They will grow up knowing what it is, what to look for, how to treat it and what limitations(if any) they have. The only limitations my kids really have anymore is no football, any kind of hockey, dodgeball, rugby or falling down stairs. My bleeder of the bunch just tried out for baseball, and we actually had more problems with her asthma than her VWD.

Well the local hematologist said I do have vwd but as I said he didn’t give me too much info and said the hemophilia clinic would be able to provide tx and could assist with my future surgery since the clinic is right down the road from the women’s hospital I go to. He called me personally because he had to cancel my prolapse repair surgery which couldn’t be finished in November. I know I shouldn’t get ahead of myself but I have been sick most of my life and have been really going down hill the past few years despite trying to seek tx and meds and a healthy lifestyle. Thanks guys for your input!