The Founder of Endo Silence Scotland Talks Endometriosis Treatment, Fertility, and the Importance of Trusting Your Body
Katy Johnston promptly sends a message the morning I’m meant to interview her, apologizing that she’s running late from a post-work doctor’s appointment. It’s 6PM in Glasgow, but seeing as I’m just pouring my morning coffee in San Francisco, the delay is welcomed. We finally connect via Skype, my summer editorial fellow, Meg, squeezed next to me as Katy, blonde hair and big smile, comes into focus from 4,000 miles away. We’ve asked to interview Katy after reading about her experience with a unique endometriosis treatment regimen—and how her current treatment plan is to induce menopause. What does that even mean? We wonder. She seems so young and vibrant! As it turns out, both can be true. A young, vibrant woman can suffer something so debilitating she chooses hot flashes over cramps. Katy is the founder of Endo Silence Scotland, and here she shares her experience with endometriosis.
Getting a Diagnosis
It takes a lot of courage to present yourself to someone and say, there’s something wrong with me and I don’t know what. And for people to disregard that for years can be really challenging and isolating and just rotten. Abby [Norman, author of Ask Me About My Uterus] had a terrible time getting people to listen to her.
Before I was diagnosed, I was working in a coffee shop and everyone would joke, “have you been eating all the pastries? What’s going on?” because I had such a dramatic weight gain. I was like, you know I just gained weight, people do it all the time. But then, after my graduation, I lost about two and a half stone (35 pounds). At this point, when I went to the doctor, he finally listened because the extreme weight loss is a symptom of ovarian cancer.
It’s bizarre the things medical professionals are trained to listen for and things they are almost societally trained to ignore, like a woman saying she’s sore. They’d send me home with some ibuprofen and I was like, no, that’s not going to cut it. I was walking up to [the emergency room] like, it’s me again, can I please have my morphine? And you know people look at you like you’re a burden and you’re crazy.
Katy Johnston, image via The Scottish Sun
Having a Support System
My mom and I have a really special bond, but for years my mom just kind of responded with, oh you’re like me, I had bad periods, too. Kind of, you know, get over it. And she’s so lovely and not that way, she’s never harsh with me, she just didn’t realize. Obviously, when it started to get really, really bad, we re-evaluated that and she was totally here for me all the time. When I was in hospital, my mom and my boyfriend ended up basically bunking up in my house, which was so weird but really a bonding experience for everyone. They were staying in the flat just running “operation: get Katy better.”
In terms of my relationship with [boyfriend] Niall, I think it’s brought us much closer together, because this is the kind of thing that would make you decide whether you were really invested in someone, to want to go through that with them. I had to be upfront about being too sore to do certain things…we’re not going to have sex all the time. So it takes a certain kind of wonderful person and special sort of relationship for you both to be like, this is actually worth it: I’ll be with you when you’re sick, I’ll come to hospital with you, I’ll see you get two internal scans, I’ll be in the room. So of all the relationship tests, this is definitely a big one.
I’m really optimistic about my fertility. I’ve never really said I don’t think it will happen for me because the doctor’s never said it, so why would I? But the pamphlets [on endometriosis] scare you because they’re basically plastered with “never going to be a mother!” And that’s quite difficult when your boyfriend, or your boyfriend’s mum, sees it—it’s quite a difficult conversation to have, but thankfully we’re really open and close and they know that’s not the case. Because I think it’s like, 60-70 percent of people with endo do conceive naturally.
I’m really optimistic that, if eventually I want it to happen, it will happen. It seems ridiculous to think about it so much because I’m 22; it’s not on my agenda to start a family. But I think when someone almost dangles the opportunity in front of you and says, you might not be able to do this, I realized how important it is to me and that [starting a family] is definitely something I want to do.
Katy Johnston and her mom, Jane, image via The Scottish Sun
So, here’s the thing about “going through menopause” at my age. It’s kind of a clickbait headline, which I get. They want people to read it, but as soon as you do, you understand it’s not menopause in the sense that I won’t be able to conceive, it’s more like giving my body a break. Basically, when the doctors went in they say [my endometriosis] was quite bad—stage four, which is the worst. There were massive adhesions everywhere and my fallopian tube was the issue because it had expanded to the same size as my womb. I don’t like to think about it ‘cause it really freaks me out, to be honest. So I said to my surgeon, I want to keep as many of my reproductive parts as I can.
So in getting these injections, in this type of endometriosis treatment, it’s a chance to give the tube a chance to kind of calm down. The medication reduces ovulation by 80 percent. So we’re basically shutting things down for a little while to give my body a chance to recuperate and calm down because everything is so inflamed and enlarged, and every time I ovulate, it contributes to that. So, I’ll get an injection every three months for nine months to a year, and hopefully by that time we’ll see some progress in terms of things reducing in size. I was pretty against this drug when I first heard of it, but I got to weigh the pros and cons and think about my quality of life and remember that it’s only a temporary state.
I’m inherently anxious but I feel quite impressed that my body’s been able to recover. The scars are quite small and I’m quite excited about that. My mental health is actually weirdly good in that through all of this, I’ve never been in a depressive state. There are times when I’m having a hot flash or sweating and then having a panic attack, but you’ve got to kind of just be like, this is funny. And it’s temporary.
Getting a diagnosis can be so hard because you have nothing to compare your pain to. I would be like, well, everybody gets cramps, what’s so special about me? And pain during sex—well, how the heck do I know what’s painful during sex? But you have to listen to your body. I was so plagued with insecurities that I doubted my own pain. Treat yourself like you would treat your best friends—if your best friend was telling you she was experiencing terrible pain, you wouldn’t tell her to get on with it.