‘It’s hard to remember a time when I wasn’t in pain’
SARAH HARRIS opens up about the pain of a life with endometriosis. She’s 23, and a freelance journalist who lives in Wollaton
IT’S hard to remember a time in my life when I wasn’t in pain.
Memories of my youth are intertwined with flashbacks; hiding in toilets as blood soaked through my primary school uniform, curled up on the floor of the nurse’s office during secondary school whilst clenching my stomach in agony, skipping lectures in the first few weeks of university as I changed my sanitary pad for the third time that hour.
For a long time, I thought this life was normal. After all, from the age of 12 onwards doctors had been telling me that this was all just a ‘part of being a girl’ and I had to ‘deal with it.’ By the time I realised this life was in fact far from normal, it was too late.
I was barely days in to my second year of university when I was told I had endometriosis. By this point, painful and heavy periods were second nature to me. But when it got to point that it was not only impacting my physical health but also my mental health and overall quality of life, I knew something had to change.
After a handful of failed attempts, I managed to persuade my GP to do something. By that point I had been heavily bleeding for over 6 weeks (and would continue to for another 5 months).
One simple ultrasound convinced everyone what I had subconsciously known for years; something wasn’t right.
Endometriosis is a chronic gynaecological condition in which tissue similar to the lining of the womb starts to grow elsewhere. In my case, not only was it growing on my ovaries and uterus but also my bowels and bladder. As a result, my pain had become debilitating and the heavy bleeding was constant, as opposed to just a few days each month whilst I was menstruating.
Although there is no cure for the condition as of yet, there are a number of methods that can suppress and treat it. After a few months of trying various hormonal medications which made no difference, it was clear I would need surgery. The surgery was complex. It took two highly talented surgeons 8 hours to carefully remove the endometriosis and separate the adhesions that had formed between various organs.
Not only was there a risk of damaging my reproductive organs but also other vital organs. Yes, it was risky, but if it would give me my life back, so I didn’t care. And thankfully, it worked. For the first time in a long time, I was pain free.
Of course, it’s not to say that it completely went away. Given that endometriosis is a chronic condition, I knew the chances of it coming back were high, but in the meantime, I wanted to make the most of my health.
For two years I made the most of every opportunity I could; I finished my undergraduate degree, travelled, got a job, started my masters, and celebrated whenever I could. This is how I expected my youth to be. Until one night - just a few weeks before the UK went into a national lockdown – when I felt a sharp pain in my pelvis. The moment I felt it, I knew it was back.
The pain went from occurring every few weeks, to every few days, to every few hours and then every few minutes – until it was constant. My pelvis felt like it was on fire. It hurt to walk or sit. Even the strongest of painkillers couldn’t numb the never-ending ache I felt and still feel as I type this.
After an MRI was ordered and showed that my endometriosis had returned, my gynaecologist put me on an ‘urgent surgery’ waitlist. Unfortunately, I’m not the only person in this position. 1 in 10 women in the UK suffer from the condition and a recent investigation found that due to the pandemic, some gynaecology patients have been waiting for surgery for 2+ years. As much as I want my pain to be treated as a priority, I know that there are others who just like me are suffering. So, for now, all I can do is wait.
Despite awareness around the condition having slightly increased in the past years and the government recently vowing to improve endometriosis treatment in the NHS, there is still more that needs to be done. The journey I had been on to get a diagnosis and treatment ended up inspiring me to pursue a career in endometriosis research.
As well as this, I’ve found a community of support and understanding through various Facebook groups and have even made lifelong friends who also suffer from the condition. Painful periods are not normal, and I wish someone had told me that earlier on. I wish the handful of male doctors I had approached about the topic as a young girl hadn’t turned me away because they were uncomfortable or because they believed that the pain came as a part of the package. I wish even now; I didn’t have to wait months for a surgery that I need to return to normality. And I wish endometriosis was treated with the same urgency as other conditions; because for me and thousands of others, it is just as devastating.
Painful periods are not normal, and I wish someone had told me that earlier on
Sarah Harris