Next in our Period Powerful Profiles series we chatted to Katy Johnston, creator of Endo Silence Scotland.
After being diagnosed with stage 4 Endometriosis, Katy set up Endo Silence Scotland to raise awareness of this condition and to give a voice to Endo Warriors. Join us as we catch up with Katy to chat about Endometriosis myths, period taboos and what keeps her motivated on tough days.
Could you please tell us about yourself?
“My name is Katy Johnston, I’m 23-years-old and I live in Scotland. I am from Aberdeen but have been studying and working in Glasgow for around 5 years. I have a degree in English Literature and am studying for a post-grad in multimedia journalism whilst working as a radio presenter on Capital Scotland, running my campaign and balancing a chronic illness.
Sometimes this can get a little manic, but my endometriosis has already stopped me doing so much and I’m determined not to let it get the better of me again.
I was diagnosed following surgery in April of this year after years of unidentified trauma around my period. The kind of monthly trauma: heavy bleeding, cramps, sweats, nausea, vomiting that would render me unable to leave the house for days on end.
Last year, this pain that both myself and doctors had largely ignored, came to a head and I dropped two and a half stone in three months on a diet of severe pain. I had nausea that made me sick multiple times a day and cramps that left me confined to the house. This went on for a period of eight weeks before surgery where they found stage 4 endometriosis, an enlarged fallopian tube (expanded to the same size as my womb) and that my bowel is fused to my uterus.
This was probably the darkest time of my life. But, weirdly, I felt vindicated – thank goodness this isn’t just in my head, thank goodness someone is listening to me. It was during this time I started writing about my experience and started my campaign, ‘Endo Silence Scotland’.”
What motivated you to start Endo Silence Scotland?
“When my gynae told me I might have endometriosis, I had no idea what she was saying. I’d never even heard the word ‘endometriosis’ despite the fact I’d displayed classic symptoms from the day I first started my period.
When I found out what was wrong with me I felt alone. I felt that I had no one to turn to because although I’ve never had a problem talking, periods felt like a subject that was just off the table. So I started ‘Endo Silence Scotland’ as my contribution to ending the silence surrounding endo and periods.
Nobody should be embarrassed about something this natural. Nobody should be made silent when they feel pain.
I share everything from the latest research in the field to personal stories and relatable memes. It’s going really well, and people are really responding to the content we’re putting out there. I’m really proud of what we’re doing and hope it helps people going through an endo diagnosis or who think they might have endo to feel less alone.”
Why should we be talking more about periods?
“100%, we should be talking more about periods. ‘Period’ is still a dirty word reserved for hushed conversations or the butt of (usually un-funny) jokes. Periods are the most natural things in the world – and if we don’t talk about them we raise another generation of girls who feel awkward and gross about their own bodies. I don’t want to be a part of a society that isn’t at least trying to change that. Not to mention the fact that 1 in 10 of those women (190 million across the world) might also be suffering with endo, in pain and in science.”
What myths exist about endometriosis?
“There is SO much damaging information out there about endometriosis, so many half-truths, untruths and exaggerations. So many things that might put an undiagnosed person off pushing for answers which could be so damaging in the long run.
Some myths: ‘only a hysterectomy cures endometriosis’, ‘endometriosis makes you 100% infertile’, ‘having a baby cures endometriosis’, ‘endo is an STI’, ‘you get endo from using tampons…’
We don’t know why we get endo and there is, as yet, no cure, but I can guarantee, these are all untrue. “
Why do you think we are facing so many issues in women’s health?
“Our culture is still positioned against curiosity when it comes to women’s health. We tend to wait until it’s ‘really really bad’ before we ask for help to save being presumed to be a difficult woman or a hypochondriac. The number of times I’ve sat in a doctor’s office, listed my symptoms and been told ‘nothing is wrong’, ‘this is just something every woman goes through’ would be enough to put anyone off. That dismissive attitude is a massive problem and it’s not a ‘women’s issue’, it’s a societal issue. “
What are your thoughts on getting menstrual wellbeing onto the curriculum, an initiative backed and petitioned by Endo UK?
“I was delighted when I heard about Endo UK’s campaign to get menstrual wellbeing into the curriculum. Young people need to know about gynae conditions like endo so that they can learn to question symptoms they may have without feeling like they are being ‘difficult’ or that they are weak and should ‘just get on with it’ and suffer for years without medical care. I wish I’d known about my endo earlier. 22 is still young, but by the time they got to me things were already really bad. I could have benefited from finding out a good few years earlier in the long term. “
How do you keep yourself motivated on days where you are struggling?
“I remember the person I was before surgery: sick, incapable of leaving the house, depressed, unable to function and feel proud of my own resilience and strength for getting through it. I look online and see all the inspirational women in this community and think, wow, look at what these wonderful human beings are achieving in spite of their pain.
On days when I’m sore, I am kind to myself: I eat well, I have long hot baths with Epsom salts, I watch the telly and I take the day off and don’t punish myself for it. Self-care is so important for everyone, even more so when you’re chronic. I don’t make excuses anymore – I just say, okay – take today, win tomorrow.”
Why is Instagram so important for driving awareness and creating supportive communities?
“Instagram is brilliant because there are no barriers. There’s a level of anonymity online that makes people more open about their experiences and the importance of that cannot be emphasised enough. Instagram gives people the platform to share and comment and learn from other endo warriors all over the world and receive support wherever they are. It saved me, and I hope it can do the same for others going through diagnosis. “
What advice would you have for other Endo warriors?
“Push: Be an advocate for your own health.
Fight: To be seen by the right professional because this is your body, and nobody knows it like you.
Ask questions: Think long-term: pain management, fertility, research.
Stay switched on to this community and allow them to help you. Some of these women have more advice, wisdom and experience than 25 doctors – trust me, you’ll need their support when things feel impossible. It will help a lot.
Remember how strong you are: You are capable, and it will be okay.”
What change would you love to see in the future?
“Well, I’d love to see a cure in my lifetime, although, I know we’re not there yet. Other than that, I’d like to see a change in mindsets. I’d like young girls going through what I went through to feel that they are part of a society where a woman can ask questions about her own body. Where endometriosis is something we’ve all heard of and we all know to look out for. Where support and medical attention is accessible, and doctors are responsive to our pain.”