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]

• Read more about Endometriosis Action Month Week 1 Round Up

This is Saverra's Story.

I’ve experienced pain for as long as I can remember. My first period, at the age of 11, was extremely painful, and it never felt ‘normal’ or manageable.

I first reported my symptoms around 15 or 16. I was told to “bear with it” and that painful periods were normal. In school, I would cry during lessons and walk home bent over in pain, often bleeding through my clothes. Teachers just accepted it as normal.

I followed doctors’ advice, took prescribed medications, but they never worked. The only reason I was referred for laparoscopic surgery was because I mentioned I wanted to have a child. My pain alone wasn’t enough to be taken seriously.

For me, diagnosis took around 20 years from first experiencing symptoms to finally receiving a diagnosis via laparoscopic surgery. My journey involved repeated dismissal, minimisation, and misinformation. Hormonal medications over a decade did not work for me and actually worsened my symptoms, and I was told at a young age to consider having children or having “everything taken out” which I thought was a cure. Even on the day of my laparoscopy, a surgeon told me there was “most likely nothing wrong” with me.

Endometriosis affects every part of my life. There are days when I literally can’t get out of bed. Washing my face, getting dressed, even basic tasks can feel impossible. On those days, I have to decide where to focus my energy, saving enough just to make it through work. Sometimes just managing that feels like an achievement, but it’s not a healthy way to live, and it’s not fair that I have to structure my life around surviving my symptoms.

I’ve had to adapt almost everything, planning meals ahead, using delivery services, pacing myself, and looking for shortcuts wherever possible to conserve energy. I’ve downloaded apps to monitor heart rate and energy levels etc to guide exercise because I love going to the gym, but I have to plan around my physical limits.

Managing endometriosis is not just a physical challenge, it’s a mental one. I live with undiagnosed ADHD and there’s a constant tension between my body, which needs rest, and my mind, which pushes me to move. If I don’t get some form of movement, I feel agitated, sad, emotional, and unfocused. Endometriosis has added to my anxiety, depression, and periods of feeling very low. I try everything in my power to manage it, both through medication and alternative approaches but it’s exhausting. It’s a continuous relearning journey, but I still push myself as much as I can, sometimes overdoing it, though I think I do quite well given all the health challenges I face.

Work has been heavily impacted too. I’ve had to take a lot of sick leave, move from full-time to part-time and back, and have been told to reduce my hours which isn’t financially viable for me.

In the South Asian culture, these issues are rarely talked about. It’s frowned upon to speak openly about period pain or chronic conditions, and often people are told to “just hide it” or that it’s normal. That lack of conversation and understanding has made this journey even harder. I wish someone had told me early on that severe pain isn’t something you just have to tolerate, that it’s not normal to suffer in silence.

I found Endometriosis UK while searching for answers and reassurance that my experience wasn’t unique. Reading other people’s stories made me feel less alone and more understood. One of the reasons I submitted my story is because I feel endometriosis is still very underrepresented and not widely spoken about in the South Asian community, so I hope sharing my experience might help raise more awareness.

To others living with endometriosis or going through the diagnosis process, trust your body. Pain that disrupts your life is not normal. Keep advocating for yourself, even when dismissed. Adapting your life to cope is not failure, it’s resilience.

I hope we all get the support and help we need.

Thank you Saverra for sharing your story. We hear all too often that those suffering with endometriosis symptoms feel dismissed and that their pain is not taken seriously. Endometriosis doesn’t wait and Saverra and too many others like her are left without timely diagnosis and access to personalised care, treatment and management options. This must change. 

Endometriosis UK is calling on UK Governments to act now to drive long overdue change to improve access to care and reduce diagnosis times. Our recommended roadmap for change is available to read in our 2026 Diagnosis Report, "The State of Endometriosis Care in the UK"

You can join us in taking action by writing to your elected representatives and asking them to take urgent action by using our easy online form.

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This is Lisa's Story

I first noticed symptoms from the very start of my periods, around age 11. From the beginning, the pain was severe, disruptive, and overwhelming - but I was told it was normal, that it would settle, and that everyone struggled. So I learned early to minimise what my body was telling me.

As the years passed, the pain didn’t disappear - it changed. It deepened. It became something I learned to plan my life around. I learned how to function while hurting, how to push through education, work, and daily life while managing symptoms that were invisible to others.

I sought medical attention repeatedly over many years, but my symptoms were often dismissed or explained away. It took several years of advocating, pushing for referrals, and insisting that something was wrong before I was finally diagnosed. I believed that once there was a name for what I was living with, things would become clearer and that accessing care would become easier. That wasn’t the case.

Even after diagnosis, it has continued to be incredibly difficult to be listened to, treated, or taken seriously. I have been told – correctly - that the stage of endometriosis does not correlate with how much pain someone experiences, yet in the same conversations, my symptoms have been minimised because my disease was described as “stage 1/2” or “superficial.” These labels have been used to downplay my pain despite years of symptoms, multiple surgeries, and ultimately a hysterectomy.

I have been told I “don’t have it as bad as others.” I have been advised that surgery should be a last resort. I have also been told, contradictorily, that my surgery cannot be done privately because my case is too complex.

At one point, a red flag referral was downgraded to an “urgent” referral with a 48-week wait - without a single test, scan, or appointment taking place before that decision was made. Faced with waiting almost a year without investigation while my symptoms continued to worsen, I felt I had no choice but to seek private care simply to be seen.

Throughout this journey, the physical impact has been relentless - chronic pelvic and abdominal pain, flares, fatigue, and the unpredictability of symptoms that affect every aspect of daily life. But the mental impact has been just as significant. Years of having to explain, justify, and prove my pain have led to anxiety around appointments, self-doubt, and emotional exhaustion. Living in a constant state of advocacy takes a toll.

Endometriosis has shaped my education, my working life, my relationships, and my mental wellbeing. It has required resilience I never expected to need - not just to live with the condition, but to access care for it.

I am sharing my story in the hope that greater understanding, earlier intervention, and more compassionate listening can spare others from enduring the same long and exhausting fight to be believed.

Thank you Lisa for sharing your story.

Lisa first started experiencing symptoms of endometriosis at just 11 years old, but like far too many others, her journey to diagnosis was long and exhausting, and even after diagnosis, access to treatment and care remained a challenge.

Endometriosis UK is calling on UK Governments to act now to drive long overdue change to improve access to care and reduce diagnosis times. Our recommended roadmap for change is available to read in our 2026 Diagnosis Report, "The State of Endometriosis Care in the UK"

• Read more about Endometriosis UK release new report highlighting alarming increase in endometriosis diagnosis times

• Read more about World Endometriosis Organisation - Webinar on Inclusion

This World Endometriosis Organisation webinar focuses on Inclusion, where we’ll explore what true inclusion looks like across different endometriosis lived experiences. 

The presentations were done by inspiring speakers who each brought powerful perspectives to this conversation:

• Julia Mandeville
• Surita Mogan
• Maddalena Giacomozzi

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This is Taya's Story

I first started my period age 11, just two months later my symptoms began. I spent Christmas that year doubled over in pain, bleeding heavily and panicking, honestly thinking I was going to die. By the following year, I had begun to develop severe migraines, a trip to the doctors told me these were being triggered by how low my iron levels were. My GP asked how my periods were, but when I told them they were heavy and painful it was shrugged off, given some iron tablets and sent on my way. The pain continued, even ending up in a trip to A&E a few weeks before my 14th birthday. Once I began tracking my periods at 15, still experiencing that pain every month, I quickly linked that severe pain to ovulation but after being sent to hospital and having my very real pain dismissed, I felt silly going back to a doctor.

I began to realise though that it wasn't normal to need a week off school every month for my cramps, then more for the migraines, nausea, ovulation pain, etc. None of my friends experienced this and I couldn't understand why I did. This sparked an urge to research myself. I began to look up my symptoms and eventually found endometriosis. It all began to make sense.

I knew I might not get a doctor to listen to me without hard evidence, which is when I began tracking my periods, at the point of writing this I have almost 11 years of symptoms consistently tracked. This taught me an incredible amount about how my body works and when I eventually found a lovely GP who took my pain seriously, having all of that information to hand helped significantly.

In early 2024, I had one of the worst pain flares I have ever had, I couldn't even stand up, which is where I drew the line and made it my goal to find a doctor who would listen. Thankfully I did, and after a scan that showed an ovarian cyst and a repeat scan that showed this had increased in size, I got my gynae referral.

My first appointment was awful, I was belittled, dismissed and told they didn’t understand why my GP had referred me. I was pushed to try various hormonal treatments, but what I wanted was a diagnosis and a reason for the pain. I was even told "too many women worry about endometriosis". My GP took my concerns seriously, but this experience left me distraught, anxious and disappointed in the system.

A few months later I saw a new consultant who was happy to go for a 'diagnosis first' approach. I had my diagnostic laparoscopy at age 25 in July 2025, which showed I had endometriosis and I am now waiting for an appointment with the endometriosis specialist team to get further surgery, which may need to be a multi-team surgery due to my ureter being trapped under the adhesions.

Throughout my whole journey, I have always referred back to Endometriosis UK, I have used their support chats with the volunteers, the forums, the resources to take to appointments, and just general advice. All of this has been a massive help to get me to the stage I am at today and I'm not sure I'd have been able to do it without that.

Thank you Taya for sharing your story.

Taya's story highlights the urgent need for improved awareness and understanding of endometriosis, and the importance of symptoms being taken seriously.

Taya also shares how tracking her symptoms helped her both to understand her own body, and to advocate for herself at medical appointments. If you are struggling with endometriosis symptoms, our Symptom Checker and Symptom Diary Template may be useful.