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.
