How Well Do You Know Your Endo?
Author and endometriosis advocate Jessica Murnane shares thoughts from her new book, Know Your Endo.
Jessica Murnane is your new endometriosis BFF. The 44-year-old creative consultant from Charleston, SC, knows a thing or two about endo—she has stage IV and has been living with it for over a decade. Murnane began speaking publicly about endometriosis in her 2017 cookbook, One Part Plant, in which she briefly mentioned how plant-based eating had helped her manage her endo symptoms. What started as a passion project has since grown into an online community called “Know Your Endo”—and now, a new book of the same name.
Know Your Endo: An Empowering Guide to Health and Hope with Endometriosis is part practical self-care manual, and part support and advocacy guide for people with endometriosis. Murnane lays out a toolkit for endo warriors (or, as she calls them, her “friendos”) to live and thrive despite the tough mental and physical impacts of endometriosis. She combines scientific research and expert interviews with the real-life voices of people living with endometriosis and sharing their highs and lows.
We spoke with Murnane about her endometriosis journey, misconceptions about this chronic condition, and what she hopes her book will bring to people’s lives.
HealthCentral: Why did you decide to write a book for people with endometriosis?
Jessica Murnane: In my cookbook One Part Plant (which came out in 2017), I included one small page about endo. I had a lot of readers message me and say, “Oh my gosh, that page in your cookbook helped me get diagnosed,” or “That page in your cookbook helped me feel seen for the first time.” The response made me feel like, “I don’t need to write another cookbook, I’d like to write an endo book.” If a cookbook is helping diagnose people, there seems to be a lack of information out there.
It felt really hard to write this book in the beginning, because with endo, you can’t just wrap it up with a bow and say, “Here’s the happy ending.” But the thing I wanted to do most was just give people the most up-to-date information so they can feel empowered to start making health choices for themselves. And also, just to help people feel less alone.
HC: You get very personal about your endometriosis story in the book. What made you decide to be so open about your own challenges, specifically related to mental health?
Murnane: A lot of times when we see people online or read their books, we only see their “after,” and we don’t really see the “before.” I think it’s important to show that is a path. I didn’t read a book and get better all of a sudden; my endo journey has been almost a decade in the making, and I’m still working on it. I think it’s important for people to see that you can start at the bottom and gradually work your way back out—I don’t want to ever say I’m “on the other side,” but I feel so much better now.
HC: Speaking of mental health, you have a whole chapter on stress and endo, or as you call it, “strendo.” How are mental health and stress relevant to endometriosis?
Murnane: A lot of people with endo feel that in the doctor’s office, they are barely given physical treatment options, and the mental health part is not even addressed. In one 2019 BBC study, researchers interviewed over 13,500 people with endo, and nearly half of them said they have suicidal thoughts.
This isn’t something that’s all in your head. One of the doctors I interviewed said, “Imagine someone walking around with an acute broken arm every day. You might have more compassion for that person because you can see their broken arm.” But endo is a condition you can’t see, and it feels very lonely sometimes. So, I think the mental health component needs to be addressed more.
HC: This statistic in the career chapter was particularly startling: On weeks where their symptoms are bad, people with endometriosis can lose seven to ten hours of productivity at work. And yet, most continue to push through the pain without taking time off. Why is it so hard to talk about endometriosis with your boss and coworkers?
Murnane: We’ve sadly been conditioned to not talk about periods. And for endo, the pain isn’t just during your period—if you have fatigue five days out of the week, that’s something that’s really hard to talk about. People might wonder, “Why don’t you get more sleep?” or “Why don’t you do this one thing differently?” I don’t think people understand endo on a whole.
HC: Another stereotype about endometriosis is that it has historically been regarded as a cisgender white woman’s disease. Why does this stereotype persist, and how does it harm the endometriosis community?
Murnane: Just as of last week, one of the biggest hospitals in the United States still had on their website that white women had a higher risk factor of having endometriosis than people of color. I’m very fortunate to know people from the organization Endo Black, a group that is actively getting these kinds of things removed from hospitals’ websites. I do think there is progress there. But when I was interviewing a queer person with endo, she said that doctors didn’t think that painful sex applied to her, and they didn’t even talk about fertility because they assumed she didn’t want kids. Transgender people can be denied care point-blank.
This is a huge problem across the board, not just with endo. But when you have endo, you already are looking at an eight- to 10-year diagnosis time. Tack on being a person of color or transgender or queer and you have an even longer wait time. There are so many amazing activists who are doing great work, but if the top hospitals in the country have this misinformation on their websites, that’s where it needs to start—we need to get that information removed.
HC: I loved how this book was not a one-size-fits-all endo management guide. You were constantly reminding readers that their bodies, their endo, and their healing would be unique to them. Why was this so important to you?
Murnane: When you go online and really anywhere in the health and wellness space, it feels very much like people telling you, “Well, this worked for me.” Then someone tries to do that, and if it doesn’t work for them, they feel like they failed or weren’t doing something right. That can be very dangerous for our mental health and overall well-being.
There is no one endo diet that is going to work for everyone, and there is no one type of movement is going to work for everyone. There are so many different stages of endo, and I’m not just talking about stages one through four. You might have someone who just had a hysterectomy, and that is going to be a very different healing process than someone who was just diagnosed.
It also comes down to what we have access to. I don’t think everyone is going to be able to afford to buy all of their groceries organic, but that doesn’t mean you can’t eat fruits and vegetables and be healthy. I wanted to help people create their own plan as opposed to forcing what worked for me onto them.
HC: What’s something you included in this book that you wish you had known in your early endo days?
Murnane: I think the biggest thing I learned is the information in the “Movement” chapter. Doing the interviews for that chapter blew my mind. As I share in the book, I used to get livid (and still get mad) when I saw things on websites like, “If you have bad period cramps, go for a run.” If you’re in the middle of the worst period of your life, you can’t even walk to the bathroom, let alone go for a run.
But seeing the research and interviewing people, I’ve learned about how movement can potentially lessen our pain, but that doesn’t have to be running a marathon or even going for a run. It can be using a foam roller or spike balls on your feet. I really wish that’s something I knew sooner—the idea of pacing and adapting movement to what works for you that day, and not necessarily for somebody else.
The second thing I wish I had learned sooner is self-compassion. It’s something I have started using in the past couple of years, and it has really helped me a lot during my most painful days. When I first learned about self-compassion, it seemed like it wasn’t for me—I thought it was one of those things where you stand in front of a mirror and tell yourself how pretty you are. But it’s very different from that, and I love that there is actually science to back the way it can change how our brains process information.
HC: Anything else you want to tell readers?
Murnane: If someone is in a very dark and lonely place, I hope this book helps them feel less alone and can give them the information to help them feel a little more confident when they walk into that doctor’s office. There is sometimes a power dynamic between doctor and patient that can be really intimidating and scary, and I want to help people have a little more confidence in their bodies and the way they are able to advocate for themselves. With endo, sometimes that feels like half the battle.
- Endometriosis BBC Study: BBC News. (2019.) “Endometriosis: Thousands share devastating impact of condition.” bbc.com/news/health-49897873