Halle's Story
This is Halle’s Story
I first noticed my symptoms at 12 years old when I started my periods. I had always been excited to grow up and felt proud to start my period, but that excitement quickly turned into fear.
From the very beginning, my periods were extremely painful. I would vomit constantly, feel faint, overheat even in winter, and experienced extreme bloating. The pain was so severe that I sometimes couldn’t walk or stand without support, and as time went on, I began passing out during flare-ups. I sought medical attention early, but I was repeatedly told it was “normal period pain,” that I had a low pain tolerance, or that I was being dramatic. At just 12 years old, I was prescribed birth control to manage the pain, despite not being sexually active, and was told it would fix the problem. I stayed on birth control for four years, but the pain never improved - I simply learned to live with it.
Over the next six years, I had multiple GP appointments, hospital visits, blood tests, scans and MRIs, yet I was often told I was “too young” to have endometriosis and that some girls “just have bad periods”. Being dismissed for so long deeply affected my mental health and made me question my own body, leaving me wondering whether I was exaggerating or experiencing health anxiety.
At 16, after getting my first job, I began saving money to see a private specialist because I felt I had no other choice. I was finally listened to. After undergoing a laparoscopy two years later. I was finally diagnosed with endometriosis, six years after my symptoms began. Receiving the diagnosis was strangely relieving; after years of being unheard, it validated everything I had experienced.
Endometriosis has impacted my education, work, and mental wellbeing, forcing me to plan my life around flare-ups and pain, but it has also made me determined to raise awareness. No one should be made to feel that severe pain is “just part of being a woman.” If your pain is not being taken seriously, don’t give up. You know your body better than anyone. We deserve to be believed, we deserve better research, and we deserve faster diagnosis. Endometriosis is not “just a bad period,” and speaking about it is how change begins.
Thank you Halle for sharing your story.
No one should feel they have to pay to access the care they deserve. Endometriosis doesn’t wait and Halle and others like her shouldn’t have to either. The Government must take action. Call on your parliamentarians to drive down wait times and improve access to care within the NHS today using our easy online form.
Leonie's Story
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]