Caitlin's Story
This is Caitlin's story.
My journey with endometriosis began two days before my twelfth birthday when, sat at the back of English class, I first felt the pain that I would subsequently become so familiar with. As the months went on, with a period that arrived like clockwork, the bleeding became heavier and heavier, and my reliance on painkillers to sit through lessons when I was on my period became apparent to my friends. "Oh, I don’t have to take painkillers after my second day," they would tell me, or "No, mine tend to stop after 3 or 4 days."
By age fourteen, I had realised there was something different about my periods. I went to my GP, believing that I would be taken seriously. Instead, I was told, in no uncertain terms, that my pain was normal, that because I was relatively new to menstruation, it was likely my body ‘settling in’ to womanhood, and that the pain would fade in time. I wouldn’t hear the word endometriosis for another four years.
In the following years, my school absences became more and more regular, causing my grades to slip significantly. I couldn’t cope with the pain, the nausea, the crushing fatigue that never went away. I returned to the GP multiple times and I would leave each appointment deflated and convinced that I was somehow weaker than my friends, because for whatever reason, I could not withstand this 'normal' pain that every woman in my life seemed to be taking in her stride.
From my first doctors visit at 14, to being diagnosed with a laparoscopy at 23, my diagnosis journey took 9 years. It has felt at times like I was chasing my tail and met with closed doors repeatedly.
My eureka moment came late at night, kept awake by agonising cramps, when I was desperately googling anything I could think of to find answers. ‘Why does my period make me feel like I’m dying?’ and ‘Is it normal for your period to last for two weeks?’ and ‘Why can’t I walk when I’m on my period?’. It was then that the Endometriosis UK website popped up and it felt like I’d been hit with a baseball bat. The more I read, the surer I became that this mystery disease, that I had to watch a YouTube video to learn how to pronounce, was what I was experiencing. Every symptom matched up with my own, other women’s stories could have been my own words.
Endometriosis UK gave me the language, the resources, and the guidance I needed to advocate for myself, and the more I researched, the more confident I felt in pushing for treatment. I read the NICE guidelines meticulously, which gave me a clear course of action after years of feeling lost and completely alone. I pushed for a laparoscopy and eventually, after nine years of fighting for answers, I was officially diagnosed with endometriosis. I now know that I have lesions on my round ligaments, my uterosacral ligament, my bladder, and the front and back wall of my pelvis. The diagnosis confirmed what I had already guessed, and in truth, it didn’t change much. But it should not be a privilege, nor a luxury, to know what is going on in your own body and look for answers to your pain.
Living and Working with Endometriosis: Cara's Story
Cara shares her experience of living and working with endometriosis and the importance of a supportive workplace.
I first started experiencing symptoms of Endometriosis when I was 16 years old. The painful, heavy, and irregular periods were a constant struggle. I was told it was normal and to take the pill, as many other young women still are today. It wasn’t until I turned 25 that I finally underwent a laparoscopy and received a diagnosis.
Before my diagnosis, I often felt isolated and misunderstood. The intense pain and heavy bleeding during my periods made me feel like the odd one out. By the age of 24, the pain became a daily challenge, even outside of my periods. This led to anxiety about leaving home, fearing a flare-up while out, and the embarrassment of hiding my condition.
The anxiety of facing intense pain while alone and outside the house has been the most challenging aspect. The unpredictable pains make it difficult to socialise or explore new places. This constant need to hide my struggles has profoundly impacted my mental health.
I’ve had to take time off work for surgeries and investigations. Adjusting my workload has been essential; sometimes, working from home is the only way to manage the pain and stay comfortable. Comfortable clothing and a hot water bottle can make a significant difference, sometimes allowing me to avoid taking a sick day. Thankfully, I work with amazing people. My managers have been incredibly supportive, accommodating workload adjustments, and offering a listening ear when needed. The wider business has also been brilliant, and I feel honoured that we are partnering with Endometriosis UK who are our Charity of the Year this year. This speaks volumes about the people at Ghyston, and I am immensely grateful to everyone who voted to support such a great charity.
Endometriosis is not widely understood, so there have been times when I've had to explain my condition and needs. I’ve also taken the initiative to educate colleagues. I appreciate their curiosity and willingness to learn and listen. Women's health deserves more attention and conversation. General awareness is key - taking the time to understand. Endometriosis has no cure, and it’s frustrating when people think they can dictate how to manage it. Listening without judgment and providing support leads to happier and more productive employees in the long run.
On one hand, I feel extremely fortunate for the supportive relationships I have with my colleagues. Open communication is a norm, and I am surrounded by understanding individuals. On the other hand, I believe this should be the bare minimum for everyone in the workplace. Sadly, many organisations still have a long way to go, and many women are not as lucky as I am. I don't take that for granted.
My advice to those struggling with endometriosis at work is to speak up when you can. Don’t be afraid to ask for help or adjustments. Raising awareness can make tough days easier, as the more people understand the condition, the more supportive they can be.
Thank you Cara for sharing your story.
Could your workplace do more to support those with endometriosis and other menstrual health conditions? Find out more about our Endometriosis Friendly Employer Scheme and free Menstrual Health at Work resources at the links below.
Endometriosis Friendly Employer Scheme Menstrual Health at Work
For practical tips on navigating endometriosis at work, starting conversations with your employer and more, check out our Endometriosis at Work Webinar.