#WhatIWishILearned - “I would have pushed harder and sooner for answers”

Despite our modern society, talking about periods is still seen as largely taboo. Even in the UK, 12% of children and teenagers begin their periods without knowing what a period is, with a lack of education at school nor sharing between families and friends. At Endometriosis UK, we’re working hard to break the stigma by petitioning to get menstrual wellbeing taught in schools so that no one is embarrassed talking about menstrual issues and everyone understands what’s normal and what’s not, and can seek help should they need it.

As part of this work, we’re running a campaign to get more people talking about their periods and what they wish they had learnt in schools about menstruation. We speak with 19 year old Eloise to find out how a lack of menstrual education and awareness caused her to go through much of her secondary school life in pain, without a diagnosis, and how she believes education could have changed her experience. Eloise is now using her experience to raise awareness about endometriosis and is supporting Endometriosis UK in our campaign to get menstrual wellbeing taught in schools.

What was your experience of menstrual health education in schools?

Learning about having a period at school was very limited! Especially at primary school, which was when I started my period at age 11, it was limited to general sex education and we were told periods were just something we would experience. Not once during my education was I told about the pain of periods, or what is normal pain and what is not, this meant I didn’t know to visit the doctor when things weren’t right. 

When did you start your period, and what was your experience of this growing up?

I started my period aged 11, in Year 6. From the very first period they were heavy and painful, every single month. I was in so much pain to the point I spent Christmas and birthdays in bed. At school, I paper-clipped sanitary towels to my skirt as we were not allowed to take our bags to the toilet with us and teachers wouldn’t let girls visit the toilet when they needed to. I missed out on PE and days of school because of the pain or I would go into school in agony. So school was difficult as I either missed out or couldn’t concentrate, which I believe led to falling behind in some classes. 

How long did it take for your diagnosis of endometriosis? What was your journey to diagnosis?

I was officially diagnosed with endometriosis at the age of 18 in August 2017 after an emergency operation to remove a 7x7cm cyst (endometrioma) on my ovary. After waking up from surgery I was told I had stage 4/severe endometriosis covering my entire uterus, even sticking my left ovary to the wall, leaving it immobile.

Before this I had always been shooed away by doctors. I’d had bad periods from age 11, however in January 2017 my pain was too much to bear. I had pain 24/7, leaving me with numb legs, home bound and unable to drive my car or hold down a job. From January to August, I visited GPs on several occasions, and even a gynaecologist, yet endometriosis wasn’t mentioned once.  After six months, my family and I had to take matters into our own hands after I didn’t do so well in my A levels due to the pain, so I went to see a gynaecologist privately, which is when they found the cyst on my ovary. However, this set my family back about £4,000. £4,000 despite going to multiple doctors who didn’t consider endometriosis even with my symptoms. I think being young I wasn’t believed, or they didn’t know someone my age could get endometriosis.

Can you tell us more about how you think menstrual wellbeing education may have changed your experience of your period and endometriosis?

I would’ve pushed sooner and harder for answers and help. I would have known the difference between what was normal and what wasn’t, but sadly, it’s still so taboo. 

I am still left without being able to start a career and am currently only doing a temporary job in a primary school for one hour a day due to being in between operations. I had to abandon starting an apprenticeship because of the operation at the end of the summer last year. So I feel very stuck and that I have been dealt bad cards, my peers are starting out careers or are at university and I am unable to do those things due to being in pain and having a chronic disease that wasn’t recognised. 

However, I hold on to the hope of being able to live a more normal life one day and that I’ll be able to have children, as well as start a proper career.

What would you personally like to be seen taught in schools about menstrual wellbeing? 

  • What endometriosis is. It is as important as STDs or diabetes, which are both covered at school. 
  • What’s normal and what’s not when it comes to periods. 
  • When to ask questions if you’re feeling like something isn’t quite right. 
  • More time spent with young girls, in primary school and Year 7 especially, as many of them will be starting their periods or will have done so already. Letting them know that it’s okay to talk about period pain, bleeding and irregular periods instead of feeling embarrassed. 

I am hopeful that all this work will go into creating better care and treatment for future generations and for those of us who have suffered. One day, I believe those of us with endometriosis and other menstrual related conditions will have a better quality of life thanks to this work, and these conditions will get the recognition they deserve!