My journey to diagnosis was only half the battle. The next step is fixing the conversation about menstrual pain and diagnosing endometriosis at the start.
When I started Marilyn with my co-founder, Greg, I wanted to find a way to bring forth the truth of endometriosis for patients in a way that couldn’t be denied, and I wanted to use data science to prevent the next generation from suffering the unacceptable wait time to diagnosis.
I, like many of you, have been on this journey. And, like many of you, have had to come to terms with the epic battle fought to achieve the right diagnosis.
I have faced stupid comments from doctors, I’ve retorted the sexist remarks, I’ve challenged the pseudoscience and I have begged for answers. I’ve cried in medical appointments, I’ve spent days in bed, I’ve changed my plans and I’ve adjusted my life to manage my endometriosis. Mostly, I’ve fought and fought hard.
All the while, I have known in my head and my heart that this is not good enough.
One moment can mean so much
I want to share with you the exact moment when I knew things could and should be better for patients with this condition. It’s what spurred me to apply science to the problem and why I am still working on it today.
After my diagnosis, it still took time to get my condition under control. Just like many other patients, I often needed urgent care or a GP out-of-hours to help me manage the symptoms I was experiencing. It was at one of these appointments that my view on the condition was totally changed.
I sat down in the doctor’s room and she asked me what had brought me in that day. I began by saying ‘I have endometriosis and…’… when she immediately interrupted me. She placed her hand on mine and she said ‘I’m so sorry. How can I help you?’. Not one to cry at such moments, I felt tears welling up and I struggled to talk for a moment or two.
I don’t remember the name of the doctor – I wish I did. It took me a few days to realise how huge the impact had been on me to finally be in a room with a doctor who understood me and understood my condition. It started a process of washing away the years of dismissal and helped me find my voice again. It gave me hope and confidence to seek help for my pain and ask for better when the care wasn’t good enough. With that one simple statement of kindness after years and years of appointments – most of which were unhelpful, even with a diagnosis – I had finally been heard.
The solution starts by changing the conversation
Patient experience and testimony is essential for us to listen to. It changes our ability to question problems scientifically, to avoid bias in our research and design real world solutions. It’s high time the days of ignoring or diminishing the experience of menstrual pain, referred pain and chronic pain were over. If a patient is presenting and asking for help, this should be enough for them to be offered diagnosis, treatment and support. Solving this pervasive problem is my dream for Marilyn.
If we can listen to patients, solve with real science and prevent chronic disease, we can reach so many more conditions than endometriosis.
It all starts with the right conversation.