Zainab's Story

This is Zainab's Story.

I was 14 when I started developing symptoms of endometriosis, which included severe abdominal pain, fatigue that wouldn't budge even after a good night's sleep, and very heavy bleeding. As a teenager, I felt incredibly misunderstood as my peers and my teachers thought I was being dramatic. It made me very reclusive and quiet.

Toilet access at school was challenging, especially during class time, because teachers didn't want you to leave the classroom. They didn't understand that I was dealing with something that needed me to visit the toilet frequently. It would be very embarrassing to have to raise my hand in class and my peers joking about how often I needed to go to the loo.

I would dread getting my period every month. It would make me incredibly anxious because I didn't know how to cope or how to manage the pain. Within my own community and at home where it’s a taboo topic, I wasn't able to openly discuss it. My mother would often be surprised by how many pads I needed, which made me feel self-conscious about asking her for more. Because of this, I’d ask my friends instead, and if they or the school didn’t have any, I would end up using hand towels. I was always on edge about how heavy I was bleeding.

I wasn't allowed to take time off from school. I also felt like it stopped me from being able to fulfil my potential. I really enjoyed athletics at school, and I was part of the running club, but eventually when my symptoms got so bad, I had to stop. I’d often feel really ill at school, and if I had to go home, my parents would reprimand me, and teachers would not be sympathetic about why I had to leave. All I could say was that it was related to my period, and they didn't understand why that would need me to leave school. I had to suffer in silence, I didn’t feel believed.

What I would have liked to tell myself when I was younger is that endometriosis doesn't define you, but knowing the symptoms can definitely help you. Pain is not a rite of passage. So if it's impacting your daily life, your studies, that's not normal. And you have every right to advocate for yourself and to seek answers.

Experiences like Zainab's are all too common. If we get it right for young people, together we really can change lives and provide a better future for the next generation.

When you donate to our Big Give Women and Girls Match Fund Campaign, you donation will be doubled at no extra cost to you. Your donation could help us provide resources to ensure every young person understands the symptoms of menstrual health conditions, including endometriosis, and how to seek help. It will also go towards our campaigning efforts to advocate for mandatory education of healthcare practitioners, so that everyone with endometriosis gets the care they need, when they need it.

Click here to double your donation today.

Kate's Story

This is Kate’s Story

I first started experiencing painful periods around the age of 14. The pain was so severe that most mornings I would have to crawl to the bath, desperate for any form of relief. I missed school days regularly and often had to carry a hot water bottle with me just to get through the day. I was put on the mini pill, but even then, I still experienced painful withdrawal bleeds. At such a young age, the frequent leaking and unpredictability of my cycle was deeply embarrassing and isolating.

As the years went on, new symptoms appeared - particularly problems with my bowels. Over time, I sought help from different specialists, but my concerns were often dismissed. Across three separate gynaecology appointments, I was told things like “there’s nothing wrong with you,” “is it possible this is all just in your head?” and “it must be IBS.” Each time, I left feeling unheard, disheartened, and still in pain.

Now at 27, my symptoms have escalated to the point where I have been admitted to hospital due to severe pain that even a combination of strong painkillers, and a muscle relaxant could not ease. I have recently undergone laparoscopic surgery where I was informed of “severe stage 4” endometriosis by my surgeon. I was told this has deeply infiltrated my bowel also. I’m now sitting in another waiting list to see if a bowel surgeon can do anything to save my bowel.

Endometriosis has touched every part of my life. Day to day, I live with the uncertainty of when symptoms will strike, sometimes waking in agony or completely drained from fatigue. I’ve had to cancel plans at the last minute, avoid certain foods in case they trigger a flare-up, and adapt almost everything I do around managing pain.

My mental wellbeing has taken a hit from years of being dismissed, and the unpredictability of symptoms can feel isolating, but I’m determined to speak openly, raise awareness, and push for better understanding and care for everyone living with endometriosis.

My journey has been long, frustrating, and at times, incredibly lonely. I came across Endometriosis UK fairly recently and have definitely found some relief in feeling I’m not alone. I hope to share my story in the hope that other people experiencing similar symptoms will feel less alone, and to raise awareness of the urgent need for better understanding, diagnosis, and treatment of endometriosis. No one should have to spend years being dismissed before receiving the care they deserve.

Kate's story highlights the urgent need for change to endometriosis diagnosis and care. Help us gather the information we need to campaign for the change you deserve by completing our Diagnosis Survey today. 

Edit Nov 2025: Our Diagnosis Survey has now closed. Thank you to all those who took part.

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