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Living with Endometriosis: Katy's Story

Could you tell us a little bit about yourself and your journey with endometriosis?

My name is Katy, I’m a journalist and radio presenter from Scotland and I have endometriosis. I was diagnosed with stage 4 endo after a decade of severe period pain back in 2018. The process was drawn out and painful but, like most people with the condition, I thought my symptoms were normal so took a long time to ask for help. 

My symptoms have always been agonising menstrual cramps, bloating, nausea and pain during sex. All issues I convinced myself were just part of being a woman. I did my best to ignore my pain for most of my teenage years but between my Undergrad graduation and the start of my post-graduate studies in Journalism things came to a head. I gained and rapidly lost around three stone. My body was changing beyond my control. My menstrual cramps were daily. My impulse to vomit uncontainable - I was at breaking point. I went to the doctor and was referred to gynaecology. I was terrified of what they might say about my health and my fertility but there was no way round it. 

By the time my appointment came around I was housebound. The pain was so bad I could no longer walk unaided. I had to drop out of my dream course and the issue I’d denied for almost half of my life seemed to have me beat. 

I was referred for a scan that revealed several large edometriomas, a twisted fallopian tube and that my bowel had fused to my uterus. I was seen by a specialist and had my first laparoscopy on the 4th of April 2018. Since then I’ve been menopausal, had more scans than I’d care to remember, started a podcast about women’s health and made it my mission to make sure nobody suffers in silence the way I did for all those years.

What has been your biggest challenge in living with Endometriosis?

I think one of the most challenging things about living with endometriosis is the uncertainty. This is an invisible condition that affects my life on a daily basis yet some days I feel invincible and on others I’m not sure i’ll ever make it out of bed. Getting the diagnosis was huge for me but a diagnosis alone doesn’t mean equate to a cure and recovery is not linear. I’ve worked hard to understand my body but what it needs changes constantly and people don’t always get it. That’s why the endometriosis community is so essential to living well with this disease. 

What advice would you give to someone who thinks they may have Endometriosis?

The best advice I can give is to speak up and ask for help. You don’t get a badge of honour for suffering in silence and, I promise you, your pain is valid and you deserve support. Don’t give up either. You might not be listened to the first time (or even 3rd or 4th!) but reach out to the community, consult resources from Endometriosis UK and be ready to fight for the care you deserve! 
Finally, thank you so much for all you do, what drives you to raise awareness of endometriosis?

I am passionate about raising awareness of this condition because I know what it feels like to be in the dark. For years, I blamed myself for my pain, I thought I was weak and dramatic and my symptoms were ‘all in my head.’ and I’m not alone. So many people living with this condition are made to feel the same way and it’s heartbreaking. The statistics speak for themselves, over 8 years on average for a diagnosis is unacceptable. I want to see that wait time shattered in my life time. 

What are your hopes for the future in terms of seeing change to the way endometriosis is viewed by society?

I hope everybody knows the word. I hope people are informed (even just a little) about this condition that affects 1 in 10 people assigned female at birth. I hope it’s a conversation at home, in schools, in politics! And I hope the people suffering have their pain taken seriously because this illness is very real. 
What’s the biggest change in healthcare you would like to see In terms of how Endometriosis is treated in the near future?

I would love it for everyone to have access to specialised endometriosis treatment. I’ve only recently been referred to an endometriosis centre and I still feel like I’ve won a golden ticket! This is a disease with specialist complications and every case is so different. Until every gynaecologist can perform the complex surgeries/treatments needed, every patient should be allocated an appointment with a specialist.