Hannah’s Endometriosis story
“I woke up with intense pain, blood had soaked my sleeping bag. I felt scared and alone, being away from my mum who would have known how to help me.”
‘When I got my period it was a shock because I didn’t really understand what it was yet’. Hannah had her first period when she was 11 years old. She remembers having a few bad tummy cramps that her parents thought were food poisoning or appendicitis in the lead up, and thinking back, Hannah can see it was clear that she was going to struggle with her periods.
After moving from South Africa to England in 2008, Hannah’s painful periods progressed. ‘They hit their high point when I was 14. My mom decided to take me to a private clinic and that’s when I was diagnosed with endometriosis.’
Anxiety and endometriosis
‘It was a relief to finally understand why I was in so much pain, which is a luxury not many women have until they are much older. But it was still a burden and made me very self-conscious. I was already an anxious person before this, experiencing separation anxiety and anxiety around getting my period young. The pain only added to this.’
Hannah’s anxiety got worse as she got older. In 2015, at age 16, she had a laparoscopy to remove two endometriomas (endometrioid cysts), sized 5cm and 2cm, that had formed on each ovary. ‘Just a few weeks before my already scheduled operation, I was on a geography field trip. After two days of hiking and researching, a large cyst burst and I was in agony.
‘I woke up with intense pain, blood had soaked my sleeping bag. I felt scared and alone, being away from my mum who would have known how to help me. I also felt embarrassed that someone might see me cleaning up after myself.’
Hannah had to go and shower at 3AM, changing out of her ruined pyjamas and go back to sleep wearing her clothes from the previous day.
A lack of understanding
‘I had to sit out of some activities the next day. Some of the boys teased me about my ‘period pains’ - I was furious. They didn’t and couldn’t ever really understand what I was going through.’
This lack of understanding was a common theme for Hannah and her experience with endometriosis.
‘My PE teacher at school essentially told me to get over myself and that all girls have periods. I was strong but activities like running, jumping jacks, crunches and planks would cause agony because it would cause me to have flare-ups.’
Her experience made Hannah feel like she couldn’t do sport anymore, something she was very proud to do before her endometriosis progressed. ‘It was only during my early 20s that I found exercise enjoyable again, and I see it now as part of my therapy.’
Navigating life with endometriosis
Hannah’s laparoscopy operation left three small scars on her abdomen to remind her of it. But the scars were only a small concern compared to the internal struggles it left her with.
‘At 16, having to contemplate your infertility was traumatic, and I still bear the weight of it now. My possible infertility sits with me every day, like a little shadow that intensifies after every interaction, decision or mistake. The mental weight of endometriosis has taken a lot of joy from my life.’ Hannah also feels it has put a lot of pressure on every relationship she has had.
’Having to gauge whether or not someone might want children, whilst emphasising that I really do but might not be able to, is a difficult situation to be in. I left a long-term relationship with a partner who really understood my condition and supported me. The thought of having to go through explaining my condition and hoping someone can support and be compassionate towards me again was scary.’
‘Thankfully, the older you get when starting new relationships, the more understanding people tend to be. Only now, the closer I get to my thirties (and the possibility of having children), have I managed to lighten that load and come to terms with how I might move forward with my endometriosis.’
Support systems
Hannah says she has spoken to some amazing women in her life living with endometriosis who have gone on to have children, and she has learnt a lot from them. ‘I know that I will need to seek medical support and counselling when I try to conceive. It might be simple, or it might be incredibly difficult. But I know that with support, I will get through it.’
Hannah hopes that research continues and awareness spreads. ‘I hope that young girls who are in school feeling alienated and embarrassed about their period in general, let alone girls like me who really struggle - have teachers and parents who recognise they may have a condition and need to get assessed. That they are shown compassion and understanding. Periods shouldn’t hurt. It doesn’t have to happen to ‘all girls.’
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