What is endometriosis?
It would have been nice to start this with a definition of endometriosis, but it’s hard to even define it as there is still, in 2022, no understanding of what it really is and how it works. As the NHS website states, “the cause of endometriosis is not known”.
What people do know is that it’s chronic, and it involves cells similar to the ones in the lining of the uterus being found elsewhere in the body. These cells react similarly to the menstrual cycle each month, however, with no way for this blood to leave the body, it builds up and causes inflammation, pain, and the formation of scar tissue. Despite affecting 1 in 10 women, it turns out there are shockingly still no non-invasive diagnostic methods apart from laparoscopic surgery, no blood test, no urine sample, nothing. Let alone treatments, the current options being surgery and hormones.
Normalising pain and dismissal
Sharing my endometriosis journey is always a tricky one. As something which took 10 years to get officially diagnosed, it’s hard to know where it even began. One of my earliest memories was being at university and my then housemate, now dearest friend to this day, Vicky, coming into my bedroom and asking why I hadn’t come out all day. I was lying in bed, having already taken a questionable mix of painkillers, in pain that meant I could barely stand.
And it was like that for years. I thought this experience was “normal”. That it was “normal” for women to have painful periods, as that’s the only thing I’d ever heard. After plucking up the courage to go to the doctors about it a few times, everytime I just left with stronger painkillers. Nobody ever probed into my symptoms, nor made any suggestions of referral to investigate it. It always felt like I was an easy one to get off the list before moving to the next 10 minute slot. And who was I to question the professionals?
Despite my feeling that there is a deep rooted and chronic lack of understanding and empathy from the medical and pharmaceutical industry overall when it comes to listening, understanding and taking action for women wanting to be heard and taken seriously across all women’s health conditions, I say this with love and understanding. In the UK at least, I know what it’s like to work in the NHS. Not only do I have a mother who’s a nurse, and a sister who’s a doctor, I myself used to work there early in my career. I know the struggles, and the pressures people are under, and that there are incredible healthcare professionals out there who listen, care, and want to help. However, I know that doesn’t go for everyone, especially knowing how common dismissal is for those with endometriosis.
Delayed diagnosis
In 2021, I was finally diagnosed. To say it was a relief would be a lie. I was terrified when I heard the words, said in such a casual manner by the doctor, “it sounds like it’s probably endometriosis”. My step-mother had endometriosis and was infertile as a result. She was the only person I ever knew who’d had it, and was how I first heard about it years before. She’d had a terrible time with it, and the thought of having to be labelled with this same thing was anything but relief.
Combine this with the fact that the words “it’s probably” really meant “we have no idea of knowing unless we operate on you”. After having an ultrasound scan, and not the ones you see on TV and in films of people who are pregnant. This ultrasound scan was not on my belly, but inside me and using a giant probe that, for want of a better word, looked like a giant dildo. Instead of a comforting “it’s a bit cold” jelly, cue some “it’s a bit cold” lube and the probe being inserted. The doctor moved and swirled it around, a strange and rather unpleasant sensation, making small talk as she went. Until she stopped talking, and the energy switched. A large black ball had appeared on the small screen attached to the probe.
She had found an endometrioma growing on my right ovary. It wasn’t confirmation but strong evidence that this had been the cause of my symptoms. These things are also known as “chocolate cysts”, something which I thought was a joke when I first heard it as I couldn’t see why anyone would want to associate something so delicious with something so awful.
After a wave of emotion and some tears, the doctor said we should schedule surgery to remove it and get biopsy lab tests to get confirmation that it was endometriosis. But not before I was told “at least it’s not cancer”, a sentence which I don’t disagree with but still struggle to understand. When I asked what alternative treatments there were, she said that there were none.
Value of a support network
After I left the doctors office, I was lucky to be able to call my mother, and to go home to my partner, which leads me to the emotional side of endometriosis. There is much focus placed on the physical impact, however the emotional and psychological toll that it can have is arguably even harder. The cycle of anticipating and experiencing pain and other symptoms is simply exhausting, and I slowly realised the impact it was having on my relationships, both personally and professionally. Bleeding every time you have sex with your partner is not fun, and it made the whole experience significantly less enjoyable, and subsequently more infrequent. Over time I’d be lying if I said this didn’t have an impact on both of us and our relationship as a whole, even with a solid foundation after 6 years together. However I feel grateful that I had a partner to support me throughout the whole process. Without him, I may never have plucked up the courage again to go to the doctors and insist on a referral to a specialist. Without that nudge to say enough was enough, I may have continued to normalise the pain and may never have got a diagnosis and treatment. Without the care throughout my journey and surgical recovery, from bringing me ginger tea and pain killers to simply sitting with me when I was in too much pain to talk, I could not have gotten through the last few years. And that’s why I’m so passionate about supporting others now.
Importance of education and shared experiences
It’s also important to highlight the impact education has on those with endometriosis. Unfortunately, despite advances in some areas of health education, there is still a huge disconnect and lack of information around what’s “normal” for women and their bodies, and most importantly, what to do when things aren’t “normal”. In 2022, it should not be the case that learning about all aspects of women’s health, including the things that can go “wrong” or not be “normal”, is still seen as not warranted or needed, in the school system and in the workplace. Women’s health education should be mandatory in schools, and I believe employers need to take a role in filling this gap until that changes. Women should be equipped with the knowledge, and the confidence, to challenge and question when they feel something isn’t right. No girl or woman should be walking around not understanding their bodies and having to suffer in silence, period.
The one thing I do know is that we deserve better. And whilst there is a long road ahead, the future is filled with hope. In the meantime, I hope sharing my experience and connecting with other women, encouraging them to share their stories and not feel shame for their condition and experience, gives them power. Our voices are powerful, and the time for being ignored is up. Although talking about women’s health issues, or sharing personal experiences openly, is still considered taboo by many, I believe sharing our journeys helps other women overcome the challenges they are forced to live with.
Remember, you are not alone
I truly believe that if we share our experiences, and work together to find real solutions, we will ensure people with endometriosis in generations to come don’t have to live in pain and silence anymore. Until then, if you’re reading this as someone with endometriosis and are looking for a space for real talk, not just about the physical but emotional sides of the condition, please know you’re not alone. I started an endometriosis support group for just this reason, Endo, so what?, or you can find more information and support at Endometriosis UK.
Rebekah Lloyd is a speaker, women's advocate, and founder of This Independent Life. She helps women to achieve personal independence in life through education across health, work and money, regardless of their background. Rebekah does away with the old training methods and puts facts, personal stories, and experience at the heart. She hosts and delivers impactful talks, workshops, events, and podcasts for both TIL and thought leading organisations, such as the University of Cambridge, STEMettes, and General Assembly. Rebekah also founded an endometriosis support group “Endo, so what?” which provides a safe space for education and honest real talk about the condition. She was formerly the founding member of a healthcare creative agency in London, and is passionate about compassionate leadership, mentoring, and the power of authentic networking.
Endometriosis support group: Endo, so what?
LinkedIn: linkedin.com/in/rebekah-lloyd
Website: www.thisindependentlife.co
Instagram: @thisindependentlife
Endometriosis UK: https://www.endometriosis-uk.org/