I've been diagnosed with VWD for a number of years, but thankfully, do not really have any problems for years now. (As a child, after a T&A, I had hemorrhaged, bleeding and expelling huge clots from my nose, mouth and rectum. They said they almost lost me due to the amount of blood loss.) Since seeing a hematologist a few years back and finally being diagnosed, I was told that if, at some point, I would need surgery, that I would require DDAVP. Lately, I have been using Nioxin hair products. These products are meant to stimulate hair growth. The instructions on various serums/root boosters/scalp treatments mention that the products will increase the blood flow to your scalp, causing temporary redness, etc. I haven't met with my hematologist yet (will do next week), but is it coincidental or not that since I'm using these products, I'm getting nose bleeds. And I meant terrible nose bleeds! Last night I thought my husband would have to drive me to the ER. Anyone experience any similar issues?
Many thanks and also, thank you for making me feel accepted. I've never joined a group like this and some of you have already welcomed me. I'm looking forward to learning alot from you all and helping others as well.
With appreciation -
Gilligan Girl
Hi again,
Well, my hematologist did not think the nosebleeds were caused by Nioxin. I've stopped using it nevertheless. He also suggested I see an ENT for cauterization. I was hesitant to proceed, but did so after hearing from someone that it's no big deal to have it done. The ENT told me there is no guarantee that cauterization will stop nosebleeds. Apparently, I was one of "those" patients who had difficulties afterwards. I had pain not only in the sinus cavity, but the roof of my mouth, my teeth, my jaw and into my ear along with minimal intermittent bleeding which really frightened me. I was pretty miserable for four days. I called the ENT office to inquire and they would not put me through to the doctor, nor would the back office medical assistant answer any of my questions if this was "considered normal". Her refusal to answer me only caused more anxiety. She would only respond with "each patient is different", then finally said "I'm sorry to have disappointed you in not answering your questions". Then, the doctor was out for the following week. In desperation, I contacted my PCP, who though she was not involved, did her best to alleviate my fears. She was a God send. I saw the ENT yesterday for a follow up visit and he said everything is healing well. I explained what I had been through and my disappointment in how things were handled. He provided no apology, merely stating that only a small number of patients experience what I had.
Anyway, I'm curious, all of you with VW - how typical are the nosebleeds? I've read somewhere where they will gradually disappear (but this appeared to be speaking about children). Since I never had them before, and they're only starting now, (I'm 62 yrs. old), will they always be with me? Also, regarding the Stymate nasal spray - are all of you using it only for nosebleeds or something else. Does it work well? The ENT told me to soak a cotton ball in Afrin and place it in my nostril should I have another nosebleed. I am very hesitant to shove anything up my nostril because the last time I had a bad nosebleed, even just holding the kleenex at the end of my nose - it pulled out a huge clot and I began bleeding profusely again. I'm quite terrified to put it bluntly. Apparently my insurance won't pay for the Stymate (pharmacy told me I'd have to pay $700 for it). If, and I'm praying it won't happen again, but IF I have another nosebleed, will Afrin help at all? Please share with me any information if you've had similar circumstances. Thank you very much.