Catherine's Story
This is Catherine's Story.
Catherine Nestor is a Trustee at Endometriosis UK. She reflects on endometriosis journey, from experiencing symptoms at school and at university, to finally learning about endometriosis in her 30s.
I think I started to experience endometriosis symptoms quite soon after my period started. I would go through phases of having really serious waves of pain that would be every other month and make me feel really faint first thing in the morning, so I would sometimes be late for school because I had to wait until the pain subsided.
I remember one time, for a PE lesson during the summer, we were going to run 400m for athletics practice and I was already feeling really, really ill. I told the teacher that I had stomach cramps, but she absolutely insisted that I had to join the race with the rest of my classmates. I managed to somehow to get round the whole track in terrible pain. And I just remember at the end of the race, I was seeing stars and almost frothing at the mouth because I was in such a state, and nobody said anything.
My mum was aware that I had period pains, and she could see what was happening to me, but the only thing she really said was that she used to get bad period pains too, and that made me think that it is just the way it is. There was never any mention of any kind of menstrual conditions when I was young, no one pointed you to any support or who you could talk to if you were experiencing problems.
The first time I actually went to the doctor about the pain was when I was about 19 and I had already started university. By then the pain was much, much worse and I knew I had to get it investigated. But I had such a horrible experience with my GP. She was very dismissive of the symptoms, and despite me explaining exactly what was happening each month, she didn't seem to think of it as anything to be concerned about. And her parting words to me were that I just need to get pregnant and have a baby and then I would be fine. I was in my first year of university so that wasn’t going to happen.
My symptoms also affected university life. There were lots of days when I just was not well at all, and I couldn't get up to go to lectures, and times when I couldn't just enjoy the social side of university life because I just wasn't well enough to be out. I would be in bed with a hot water bottle and painkillers.
I first learned about endometriosis when I was well into my 30s. I started doing a lot more reading to understand what was happening with my body. I had never heard of anyone talking about endometriosis before that.
Looking back, the advice I would now give my teenage self is to really trust in your own experience more, and be braver to talk about it and to say this isn't right. I need help. I think I just didn't really feel empowered to do to anything about my symptoms. Instead, I suffered in silence.
It’s really important for people to get behind the Big Give campaign. We can do so much with donations. This will help us raise much needed awareness for the condition and much needed services for those living with endometriosis.
Emma's Story
This is Emma's Story.
Emma Prach, trustee at Endometriosis UK reflects on experiencing endometriosis symptoms as a teenager.
I was around 12, when I started getting a range of symptoms such as debilitating pain and bloating. And I remember thinking I was being dramatic about it. Just not really understanding what was going on with my body.
My Mum was always a big advocate for me, she knew my symptoms were not normal and took me to see a GP at the first opportunity. But I was missing so much time that it was just a kind of routine thing that happened every month.
I couldn't be at school when I was on my period. I usually missed about two days every month for my whole school career, which was 168 days in total. That's just 12 days short of an entire academic year.
I always got the line from PE teachers that exercise would make me feel better, which it absolutely doesn't. I know that is something that works for some people, but I literally cannot do anything when I am on my period. I remember that if it ever came during the school day, I had a feeling of impending doom. I had difficulty concentrating at school if I was there during a period, though usually I would just have to go straight home as I normally throw up from the pain.
I had searched my symptoms online, like why are my period pains so bad, and I eventually came across endometriosis. I remember not knowing how to say it and mentioning it the first time that I saw a GP. But it was never something that was ever really taken into consideration until a lot later on because I was so young.
Now there does seem to be greater awareness about endometriosis, but when I was school age, I felt like I was battling something that no one really knew about, and I myself didn't really know. It really affected my self-esteem, thinking that I was being dramatic about it or that is actually wasn't really that bad. I was in so much pain, but there didn’t seem to be anything anyone could really do about it.
I think representation would have really helped at school, because I did not see anybody else my age going through the things I was going through at the time. So, it was difficult to work out if endometriosis could be what was going on. It would have really helped to see or hear about other young people living with the condition. Now it is getting a lot more exposure in the media and online.
If I had to give a piece of advice to a 12-year-old me, it would be that you're not making it up and that the pain is very much as bad as it feels. You do not need to keep gaslighting yourself. It's okay to lean on people for help.
I think people should get behind the Big Give campaign because by supporting an organisation like Endometriosis UK you're helping to create hope.
As Emma shares, representation and awareness matters. When you donate via our Big Give campaign, you are contributing to our work to raise awareness of endometriosis among young people and in wider society.
Your donation could help us provide schools, colleges and universities with talks and resources to ensure every young person understands the symptoms of menstrual health conditions, including endometriosis, and how to seek help. Donations also go towards our campaigning efforts to advocate for mandatory education of healthcare practitioners, so that everyone with endometriosis symptoms receives the care they need, when they need it.
Alyx's Story
This is Alyx's story.
I was 14 when I first started experiencing endometriosis symptoms. I had really heavy periods and I was just extremely scared and felt like nobody understood my symptoms or what I was going through. I would dread getting a period at school.
The thought of asking a teacher in a lesson to go to the toilet in case of a leak through my trousers was one of the scariest things to me. Walking in front of all of my classmates, potentially with blood through my trousers and having to take my bag with me as well, because everyone would then know that I was on my period. I can't remember there being any period products available at school at all, so if I forgot mine, I'd have to ask someone else and they might have not had the right tampon for me.
I feel like having endometriosis symptoms as a teenager definitely did affect my education purely because I couldn't concentrate. Especially if I had exams when I was on my period, I would be a lot more worried about ‘am I going to bleed through onto the chair?’ rather than ‘have I got this question right?’. P.E. at school was hard. I actually have a memory of doing an extension class in cheerleading. I thought it sounded cool and I remember doing some cheerleading moves and feeling the gush of blood coming out and being absolutely horrified. I was worried that everyone had heard what I just felt. I never went back to that class again because it was so traumatising.
I didn't feel like anyone else could relate to me and my symptoms in any way. I genuinely felt like I was the only one because no one spoke about it. Teachers didn't talk about it. Students didn't talk about it. My family didn't talk about it.
I first went to the doctors when I was around 16, telling them that I felt like something wasn’t right. I think I went back about 16 times until someone said, ‘oh, maybe we should send you for some tests.’ They gave me a blood test and told me that it was 'just a bad period'. Then as I got older and I became sexually active, I realised that what I was experiencing definitely was not normal. I only found out about endometriosis five years ago through online research.
I really think there should be lessons at school about menstrual health and a frank and honest conversation encouraged by teachers explaining what is and isn’t normal. It would be great to show students some examples of people living life with endometriosis and just be open. I think if all students were taught about menstrual health there wouldn't be as much of a taboo because it wouldn't be misunderstood or a 'secret'.
Let's not let the next generation down.
The right resources and education can empower young people to advocate for themselves at every stage of their endometriosis journey. With your support, we can ensure a better future for the next generation.
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.