Jessica Murnane on Knowing (and Managing) Endometriosis
Jessica Murnane is the founder of Know Your Endo, the endometriosis education and awareness platform (and new book!).
Jessica has contributed to/appeared in magazines and websites that include Bon Appétit, Goop, Shape Magazine, The Kitchn, Mind Body Green, and The Coveteur. She has spoken at Apple, SXSW, Taste Talks, Seed Food + Wine, Good Fest, Wanderlust, and The Erma Bombeck Writers’ Workshop, among others.
I’ve heard it can take up to 10 years to get diagnosed with endometriosis. Tell us about your diagnosis journey.
Yes, 10 years and an average of 8 doctors to get a diagnosis! It's so interesting when I think about the "journey" question, because I don't really think my journey with endo started until after I was diagnosed. You would think that after suffering with so much pain and unexplained symptoms (GI and bladder issues, painful sex, and fatigue) for so long that my life would have changed overnight by getting a diagnosis. But that diagnosis only brought up more questions that no one could answer for me. And sadly, my pain and symptoms continued to get worse after my diagnosis.
It wasn't until I was faced with a hysterectomy that I took my health into my own hands and got to work figuring out how to manage my symptoms and get the answers to all my questions. That has been the real journey. It's been a lot of hard work, but I feel so proud of how far I've come (I never ended up getting a hysterectomy).
What exactly is endometriosis, and what are the types and stages?
Endometriosis is a disorder where the tissue similar to the tissue that lines the inside of the uterus grows on the outside. It usually involves the ovaries, bowel, or the tissue lining your pelvis, though sometimes it can spread beyond the pelvic region (in some severe cases, it has grown onto the lungs).
Symptoms of endometriosis include:
Very painful periods (pelvic pain, cramping, lower-back and abdominal pain)
Leg pain or neuralgia (nerve sensations) associated with cycle
Hip pain and/or back pain
Shoulder/chest pain or shortness of breath with your cycle
Pain during or after sex
Thick blood clots with period (often dark)
Painful bowel movements or painful urination
Excessive bleeding
Fatigue and chronic pain
Diarrhea and constipation
Bloating
Nausea and vomiting
Urinary frequency, retention, or urgency
Allergies and other immune-related issues are also commonly reported
Infertility (though many women can still have children)
Someone with endo might experience one or every one of these symptoms, but the amount of symptoms someone experiences does not always correlate to the stage of your condition or how disruptive endometriosis is to your life.
There are four stages of endometriosis and these stages were designed to rate the number of implants/lesions and their depth. BUT the stage does not always reflect the amount of pain or symptoms you have. You can have Stage 1 and have more pain than someone with Stage IV based on where your endo lesions are located in the body.
How has endometriosis changed your life?
Wow. This question just brought tears to my eyes. I ask this to other people with endo all the time, but have never answered for myself.
I'm gonna focus on the wins it's brought me...
- It's the reason I learned to cook and how food became my medicine (I used to live on microwaved meals and candy...which my endo did not enjoy as much as I did).
- It's given me a deeper sense of empathy for other people's pain/struggles.
- It's made me stronger and inspires me to go after what I want aka it's NOT getting in my way.
What are three pieces of advice for women who are newly diagnosed with endometriosis?
1. Spend time getting to know the facts and become your own advocate. There is a lot of misinformation out there (even shared by our own doctors).
Some facts to get started: A hysterectomy is not a cure. Getting pregnant and hormonal medications are not treatments. There is more than one type of surgery for endo. There are management tools that can help. I have a big Ask A Dr. section on Know Your Endo for more.
2. Find success stories of people living with endo and connect with them. There is so much endo gloom and doom out there...seeing positive stories and people thriving with endo can be helpful.
3. Move your body everyday. I'm not saying it has to be flipping tires and running a marathon. I'm talking about stretching in bed or rolling on a foam roller...whatever you can do. There is such a huge connection to movement and pain management.
Your popular book, One Part Plant, is all about enjoying one plant-based meal a day, and eating mostly gluten- and soy-free. Tell us about the genesis of this cookbook, and who it can help.
Thanks for saying it's popular. Ha! Eating whole plant-based meals was the first tool I learned to manage my endo. But it was HARD. I cried about it. I didn't want to change how I ate. I was pissed that my endo was taking something else from me. But when I witnessed how much it helped me feel better...there was no turning back.
So I taught myself to cook whole food recipes that made my body feel good that I actually liked (lasagna, curry, tacos, cookies!) and didn't require pricey ingredients. One Part Plant is a collection of the recipes that changed my life and that book was created for everyone out there like me that sorta hates cooking or doesn't think they like vegetables or believes eating healthy has to be expensive. It is possible to change. And sometimes the change happens by taking one meal at a time.
Endometriosis is associated with an increased risk of infertility. What are options for parenthood for women with endometriosis?
It's really tricky because some people with endo have no issues getting pregnant and others really struggle. It's difficult to say to someone that is struggling ..."you can always adopt or create your family in new ways!" Because sometimes they just might not be there yet. I've also heard from a lot of people in the endo community who don't want pregnancy for their bodies because their uterus has already been through so much already.
If you want to pursue adoption, foster-to-adopt, or surrogacy - I think it's important to talk to other people that have taken this path aka don't let Lifetime movies be your guiding light for these processes. Those movies have created so much misinformation and worst-case scenario nightmares that it's no wonder people are fearful of these paths to becoming parents.
Personally, I knew from a young age that I didn't want pregnancy for my body, so I created my family in a "different" way. And it's one of the best decisions I've ever made in my life. I am always up for talking to anyone wanting to explore different paths to parenthood and I think other parents are too. Reach out and ask questions. We're here for you!
Any final pieces of advice for aspiring mothers?
If you are dealing with fertility issues, pregnancy loss, or pursuing adoption/fostering, I would highly suggest setting boundaries with how and who you communicate with about your path to becoming a parent. And stick to it!
We all have very well-meaning friends who constantly like to check in about how the IVF treatment went, if the adoption went through, or if you're pregnant yet. You want to say...I WILL TELL YOU WHEN I HAVE A BABY, but we don't. We end up managing their feelings about it all and don't tend to our own. And then there are also the friends who say things like "everything happens for a reason" or "at least you have an awesome job, partner, etc" or "you got this!". But when you're going through it, all of these reactions feel dismissive and quite frankly, annoying.
So, maybe choose one or two friends you share with. Friends who truly understand empathy or have been through it too. Ones that never say "you got this!", but rather, "I'm here. I'm listening. And can I buy you a drink/bring you a lasagna/watch crappy reality TV together?". This doesn't mean your other friends are "bad", they just might not be the best candidates for your support system during this time. And a support system is so important.
