The fitness & wellness influencer (@stef.williams) shares her experiences of living with endometriosis
It affects 1 in 10 women of reproductive age in the UK and is the second most common gynaecological condition (after fibroids) – yet on average it takes eight years to get a diagnosis1. This is endometriosis, a condition where cells similar to the ones in the lining of the womb are found elsewhere in the body, such as the ovaries, potentially leading to chronic pain and difficulty getting pregnant or infertility.
This is why an army of 'endo warriors' are spreading awareness of the condition and diagnosis – people like influencer Stef Williams who shares her endo journey with her 1.8 million followers on Instagram @stef.williams.
To me, being an endo warrior signifies unity. Knowing there is a community that supports each other is a huge comfort
"I started experiencing symptoms when I was 21 years old, including stomach aches, pain during sex and fatigue," she says. "I also experienced unexplained weight gain, disrupted sleep and depression. When I was diagnosed three years later, I had never heard of endometriosis, so I was relieved to finally have an explanation.
"To me, being an endo warrior signifies unity, that you’re not alone. As women, we endure a lot with our bodies and endo does feel like a battle. But knowing there is a community of women that can support each other is a huge comfort – I feel proud to be part of it."
To mark Endometriosis Awareness Month in March, here’s Stef’s advice for fellow endo warriors and allies…
"In all your relationships, I recommend trying to push through any embarrassment you feel and to tell people about your endo, especially at work. Symptoms can be debilitating, and people need to understand what you’re going through.
"This also applies to personal relationships. My husband Alex is very supportive. He helped me book appointments and always came with me. Endo can cause infertility, which can be hard for couples. For us, if kids are meant to be that’s amazing, but if not then I can’t control that. It’s something I don’t want to put pressure on right now."
Have a flare-up strategy
"I’ve discovered there are no quick fixes when symptoms arise, but I have learned that caffeine is a trigger for me, so I now drink matcha tea and the occasional coffee. Sugar is another trigger and makes me feel sluggish. For me, regular exercise, looking after my wellbeing and being mindful of my diet is the best way to control flare-ups.
"A year after diagnosis, I underwent laparoscopic surgery. Afterwards, the symptoms became significantly less noticeable, but I still suffer with pain during sex and occasionally when I go to the loo. I feel at a loss sometimes, but I’ve improved so much and am continuing to try to get to the bottom of it."
Trust your gut... Don’t stand for someone shutting you down
Be persistent
"When it comes to getting your symptoms taken seriously, trust your gut if you think something feels wrong with your body. Don’t stand for someone shutting you down, and seek advice from multiple GPs, until you find someone who listens. The first GP I saw was so dismissive. She made me feel embarrassed, like it was my fault. I next saw her six months later, because the pain was getting debilitating.
"I was trying to get a referral to see a specialist, but there was so much back and forth that it felt like a never-ending battle. I finally got an appointment with a gynaecologist who then diagnosed me."
Seek support
"I didn’t tell anyone about my diagnosis until the day before my operation as it felt too embarrassing, but as soon as I shared it online, thousands of women responded. I also recommend following @endometriosis.uk, as they have been a great support for me, providing factual information and advice. There are so many incredible stories that need to be celebrated and websites and groups out there that do that."
Stay mindful
"I practise gratitude – being thankful for the things I have and recognising what I can add into my life, rather than what’s taken away. I always prioritise my movement, too, through walks and workouts. But taking rest when you need it is just as important. You need it for your body to heal, recuperate and make you stronger."
Boots’ endo resources
Read
Inspiring and honest, Bridget Hustwaite’s new book How to Endo is for everyone on the endo spectrum: from the battle-hardened warriors to the newly diagnosed. Bridget blends her own experience with tips and strategies from experts and fellow warriors to help you thrive when you can, and survive on days when you can’t.
How to Endo (£16.99, Allen & Unwin) is out now
Join
Endometriosis UK has support groups you can join across the UK, with in-person meet-ups and activities happening nationwide. Many also have private Facebook groups and there’s an online group if you don’t have one near you.
Visit endometriosis-uk.org
Listen
This EndoLife podcast is hosted by health coach and endo warrior Jessica Duffin, who covers "all the topics that often aren’t discussed in the doctor’s office." She and her guests dive into endo-related issues, such as pain, mental health, sex, energy and the menopause.
Listen through Apple and Audible
Follow
Martin Hirsch is a consultant gynaecologist at Oxford University Hospitals and aims to help those with endo make informed choices. As well as helpful posts, such as tips for speaking to your GP about endo, he posts research and Q&As.
@endometriosis.surgeon.uk
