Thrive
Michelle Ackerley talks about living with endometriosis
It can take around eight years to be diagnosed with endometriosis in the UK, as symptoms can vary and are often misdiagnosed. For TV and radio presenter, Michelle Ackerley, this delay may come as no surprise, after struggling with symptoms before her diagnosis.
Here, she talks about her journey with endometriosis, after being diagnosed at the age of 24. She also shares her advice for managing the condition, and the importance of speaking up.
What was your journey with endometriosis before your diagnosis?
Before my diagnosis, I started a new job in media at the BBC as a runner. It was my dream job and my sole focus was being the best runner I could be. I didn’t want to go to work saying “I’m having problems with my stomach”. So, I tried to push my condition to one side, both physically and mentally.
At the time, I was also working in quite a male-dominated environment. I didn’t feel confident enough in myself to speak up about women’s health. It was even difficult to talk about periods in general!
I felt like I spent a lot of my early twenties acting through the pain. So, once I was able to get my diagnosis and have an understanding of endometriosis, it gave me the confidence to start talking about it more.
Did it help discovering you have a condition that can be treated?
It was quite an experience when I was first diagnosed with endometriosis in my early twenties. It was the first time I learnt that there’s a condition related to my symptoms. On one hand I felt relieved to have a diagnosis. But on the other hand, it was the start of my next journey with endometriosis.
Before my diagnosis, I had been keeping my experience quiet. But my mum had been previously diagnosed with endometriosis. So having somebody to talk to felt comforting.
Knowing there were people like clinicians and GPs that I could speak to and who would answer any questions I had, was reassuring too.
How has endometriosis affected you physically and emotionally?
My physical symptoms included crippling stomach cramps and chronic fatigue. The stomach cramps would stop me from sleeping, which naturally makes you very tired. This would often happen around the time of my periods. I’d get heavy periods, really bad stomach aches and skin outbreaks.
I would also suffer with very bad anxiety. For example, I’d worry about how bad my stomach aches would be when I didn’t have them. But, when I had that pain I’d feel weary from it, and try to feel okay again.
I also felt quite alone at the time, as I didn’t know how many other people were going through it.
Did endometriosis impact your relationships with others at the time?
Yes. From a personal perspective, I didn’t have many intimate relationships because during the times I wasn’t working I was just trying to re-energise myself. Or I’d be having a bit of a cry.
I would end up cancelling a lot of social plans because it felt like too much pressure, and I was already putting a lot of pressure on my professional life.
Another impact for me over the years as I get older as a woman has been thinking about fertility, and how that will affect me.
So does treatment need to be tailored at different stages in your life?
Definitely! The treatment for endometriosis evolves over time. The treatment for my symptoms has been the Mirena coil, which in itself is a contraceptive, so it’s two-fold.
Having the Mirena coil removed and thinking about how the symptoms affect me as an older female is completely different.
But, everybody’s journey is different and it does depend on the stage you’re at in your life.
What’s helped you to cope with endometriosis?
Keeping a diary has really helped me to cope with endometriosis. When I first went to my GP to talk about it, I was worried that I had not even explained myself properly.
Detailing your day-to-day gives you reassurance and support. It almost felt like I was taking it away from myself and having it as something to handle rather than it being all-encompassing.
It’s hard to create that balance between ambition and sacrifice. For me, it’s about having that confidence in being okay with not feeling well.
Having endometriosis has also made me more of an empathetic person. I feel like it does that for a lot of people with health conditions.
I think it’s important to have open conversations with others about endometriosis too. Women’s health isn’t just about women. It’s about people of all genders coming together to have a better understanding of health conditions.
It’s also quite an empowering feeling to have the confidence to talk about it.
What advice would you give others who think they may have endometriosis?
Listen to your body. If you don’t feel great, start making a diary of the things that are affecting you, especially if you discover a pattern for your symptoms. This could include things like periods, levels of pain at different times and how you feel mentally.
Book an appointment to see your GP and try and be as clear as you can when communicating with them. If you feel like you may have endometriosis, tell them.
Finally, what are your future goals for managing your endometriosis?
A goal of mine is trying for children, as infertility is associated with endometriosis. I have recently taken the Mirena coil out. So I’m very much starting a new journey to see how my body reacts and taking things step by step.
Being kind to myself is key. My mum has endometriosis and she’s had two children. So there’s really no hard rule with any of these conditions.
I’ll also continue being in the moment, not stressing myself out, and see what happens!
Are you struggling to cope with your endometriosis symptoms, or do you care about someone who is? The endometriosis section on our Women’s Health Hub offers lots of expert advice and information about endometriosis, and you don’t even need to be a Bupa customer.
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