My name is Paige, I’m 23 and from Aberdeen, and in October 2025 I was officially diagnosed with Type 1 Von Willebrand Disease (VWD) after years of unexplained bleeding symptoms.
Looking back, I’ve probably lived with symptoms of a bleeding disorder for most of my life. I experienced very regular heavy nosebleeds, bruising and problems with clotting when I was injured as a child, but these were always put down to things that were normal – something I would “grow out of” or that was simply common in childhood. As I got older, the symptoms became increasingly difficult to ignore.
The biggest impact has been upon my periods as a young woman. For around two and a half years, I experienced extremely heavy and prolonged bleeding, eventually reaching a point where I was bleeding continuously for months at a time. At one stage, I had been bleeding for ten months continuously.
I first went to my GP after six months of heavy, continuous bleeding. I was initially told that it could be related to the pressure of university, studying and the workload of my placements. When I went back after eight months, I was told that perhaps it was because I was a very fit young female as I was a runner and spent a lot of time in the gym, practicing fitness and looking after myself. It can be ‘common’ for your period to be deregulated as a result of this.
But eight months of continuous bleeding is not normal. No female should be made to feel that something so significant is simply part of being busy, stressed or fit.
Eventually, after around 12 months and lots of encouragement from my friends and family following the dismissive comments from previous appointments, I saw a GP who specialised in women’s health and was willing to really listen to me. We began exploring different options to try to control the bleeding. I was initially very hesitant about hormonal contraception because of things I had heard and because I had never wanted to take the contraceptive pill. Over the following year, we tried three different types, alongside other measures to control the bleeding, but unfortunately nothing worked.
I had also tried treatments for my nosebleeds, including Naseptin cream and several cauterisations, but continued to experience bleeding problems.
The ongoing blood loss had eventually left me severely anaemic. I was exhausted, struggled with fatigue and, on some occasions, became so unwell that I passed out. This had a significant impact on my confidence and day-to-day life. It was uncomfortable, frightening and incredibly difficult emotionally. My family and friends were also worried because they could see how much this was affecting me.
After taking a break from medication and tracking my symptoms more closely, my GP suggested that we investigate further. By that point, I had experienced around 20 months of continuous bleeding. She suggested testing for haemophilia because this had never been investigated during my childhood. She also mentioned a rare bleeding disorder called Von Willebrand Disease, explaining that it was unlikely but that she wanted to rule out every possibility.
Three months later, the results came back showing that I had Von Willebrand Disease.
Although finally having an explanation was a huge relief, being told that I had a lifelong bleeding disorder was also incredibly difficult to process. VWD isn’t curable, but there are treatment options that can help manage the symptoms and make life much more manageable. Day to day I experience points of heavy fatigue as a result of my anaemia and also regular heavy bleeding however, they are a lot more managed now having received a diagnosis and managing treatments.
After moving within Scotland, there was also a period of transferring my care to my new local health board. I was registered as an ANCHOR patient and went through several appointments and lots of blood testing over around six months before receiving my official diagnosis and being registered on the Blood Disorder database. I’ve also been trialling further treatment options so that I have a plan in place should I experience a significant bleed.
One of the most positive parts of my experience has been the care I have received from my haematology and gynaecology teams. They work exceptionally well together to understand my needs, and that has helped me start to rebuild trust in my own body.
My experience on the wards has also been incredibly positive. The Friends of ANCHOR volunteers have always managed to put a smile on my face when I’ve been in hospital for longer periods, feeling anxious or simply not feeling well during treatments. That support has meant a lot to me.
There are still flare-ups, and some months are much better than others, but I now understand my body much better. As someone who loves running, fitness and being active, that has been incredibly important. I’m learning to listen to my body, recognise when something isn’t right and trust myself again.
That is why I feel so strongly about encouraging young people, particularly students, to register with a GP when they move to university.
Registering with a GP might seem like a small thing when you arrive at university, but it can make such a huge difference. Having a local GP means there is someone who knows your medical history, can monitor changes in your health and investigate symptoms when something doesn’t feel right. For someone living with a bleeding disorder, having the right medical information and support in place can be particularly important.
My biggest message to women is that you know your own body. If something doesn’t feel right, don’t be afraid to go back and ask questions. Heavy or prolonged bleeding can have a massive impact on every part of your life – your physical health, your energy, your confidence, your studies, your work and your relationships.
For a long time, I thought I just had to put up with it. I thought maybe I was stressed, too busy or that my symptoms were somehow normal. They weren’t.
Getting the right diagnosis hasn’t cured my Von Willebrand Disease, but it has given me answers, treatment options and most importantly, the confidence to understand and advocate for my own health.
I’m really grateful to now be a member of Haemophilia Scotland and to have the opportunity to share my story. If sharing my experience can help another woman recognise that their bleeding isn’t something that they simply have to live with, or encourage a student to register with a GP when they move away from home, then sharing it is absolutely worthwhile.
