I first experienced symptoms of endometriosis more than 20 years before I was finally diagnosed. My experience was long, inconsistent and often dismissive. For many years my symptoms were minimised or normalised. I frequently felt unheard and had to repeatedly advocate for myself.
Although receiving a diagnosis brought validation, treatment has not been straightforward. Multiple MRI scans have confirmed deep endometriosis, and despite surgery, deep endometriosis remains untreated due to surgical limitations, and I also live with adenomyosis and fibroids, which compound my symptoms.
It took decades of pushing to be taken seriously. Before diagnosis, I regularly had to cancel plans and miss responsibilities without fully understanding what was wrong, which affected my confidence, work stability and overall quality of life. While diagnosis eventually brought validation, the reality is that the condition continues to significantly affect my everyday life.
In my earlier years, my symptoms were severe but cyclical, with extremely painful periods that caused vomiting, fainting and days of being unable to function. Sadly, due to the long delay in diagnosis and effective treatment, this has progressed into daily chronic pain rather than just period-related pain. I’ve had to restructure my career and daily life around symptom management and pacing. Endometriosis is no longer something that affects me monthly - it impacts me every day. This has been the case for the last 3 - 5 years.
Following a failed surgery, I am also struggling to be transferred into an appropriate specialist care team, which has left me in ongoing pain without clear next steps for treatment. The long-term nature of unmanaged pain and uncertainty has also had a significant impact on my mental health, contributing to stress, exhaustion and emotional strain alongside the physical symptoms.
I’m sharing my story because no one should have to wait decades to be believed or receive appropriate care. Endometriosis is not just a ‘painful period’ condition. It is a complex, life-altering, disease that can affect the whole body and deserves faster diagnosis, access to specialist treatment, and meaningful understanding and support across healthcare, workplaces and society.
Endometriosis didn’t wait for Leonie, and delays in diagnosis and access to effective treatment and management options resulted in her symptoms progressing over time.
Stories like Leonie’s highlight the urgent need for improved awareness and understanding of endometriosis, and faster access to diagnosis and personalised care. Join us in calling on UK Governments to take action today. Write to your representatives using our simple online form here. [add link]
