Clearing Up Endo Confusion with Jessica Murnane, Founder of Know Your Endo

You have a powerful story about overcoming your endometriosis with lifestyle changes. Could you share some of that with us? 

JM: If it's cool, instead of talking about my own story... I'd love to take this space to share endometriosis symptoms to help someone else with their own.
I didn't see this list until years after I was diagnosed and once I did, so much about my health/life made so much more sense to me. Awareness is so critical
with understanding your endo.

Endometriosis symptoms:

• Very painful periods (pelvic pain, cramping, lower-back and abdominal pain)*

• Pain during ovulation or two weeks after your period

• 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

• Infertility and pregnancy loss (though many women can still have children)

*It's important to note not everyone with endometriosis has painful periods. 

What are some of the biggest challenges you’ve faced as a person with endometriosis?

JM:
1. Accepting I have a chronic condition that I'm able to manage on my best days, but never able to fix or control its growth. I'm in a pretty good acceptance space right now, but it took a lot of work to get here and can fall right back into the mad/sad/annoyed endo feelings on my bad days.

2. The financial toll. There is so much talk about having a proper excision surgery for endo, but this surgery comes with a price tag that is not affordable for most. I had the privilege of borrowing money from my family for my last surgery (still paying them back!) and not sure what I would have done without this luxury. It's so easy to say..."find a great doctor and get an excision surgery!", but it's not. I'm hopeful our healthcare/insurance system will provide better support for those with endo soon.

3. The fatigue. The fatigue is one of my most challenging symptoms! The week before my period, I not only feel like I stayed up all night with a newborn baby and drank 20 margaritas the night before... I also look it. I sometimes get self-conscious showing up to a meeting looking like I haven't slept in a week. When the reality is, no one is really noticing but me. Endo can really change the way you see yourself... and it's something I'm constantly working on. 

We know it takes on average 10 years and 8 doctors to be diagnosed with endometriosis. What advice would you give to someone who suspects they may have endo, but is struggling to be diagnosed? 

JM: It's so important to remember that not every OBGYN specializes in endo and even if they say they do... some aren't skilled surgeons and have antiquated ideas around treatment plans. If you are struggling to get a diagnosis, it's so helpful to tap into the endo community for help. Find an online endo group/foundation/community and ask which doctors they have had success with? Which doctors are open to talking about management tools, in addition to surgery? Which doctors take the time to listen?

I also believe educating yourself on your endo is key. What are your symptoms? When do they show up for you? What helps calm them down/make them worse? Knowing your endo and educating yourself about the latest endo research can bring confidence and more of an empowered voice with your doctor. Most of us have felt that power dynamic in the doctor's office and shifting that can be a game changer. 

When it comes to lifestyle changes, we know there’s no silver bullet, and it’s all about making many small changes over time. But there may be some changes that you found more impactful than others. Was there anything in particular you tried, and even if it was difficult, you were like “that was totally worth it”? 

JM: I mean my gateway management tool was changing my diet (I wrote about it in my cookbook, One Part Plant). Which was not easy and cried about it for months. I thought it was just another thing endo was taking from me. But it worked and was 100% worth it. And that lead me to moving my body in new ways. Finding stress-management tools. Understanding my endo better and what makes it feel good, and what doesn't.

I still have some bad days, but my tools are a critical part of my life now and can't imagine where I'd be without them. 

Where can someone with endometriosis go if they’re looking for a community of other people with endo? 

JM: Know Your Endo (our monthly newsletters are packed with goodies and are building a pretty great online community too!).

• This Endo Life

• The Endo Co

• Endo What? 

There are so many great ones, but these are great places to start! 

About Jessica

Jessica Murnane created Know Your Endo to help everyone out there that feels alone, is confused about this disease, or doesn't even know where to start. She is also the author of One Part Plant Cookbook, the host of the One Part Podcast, and a sought after speaker who has contributed to and appeared in magazines and websites that include Bon Appétit, Goop, Shape Magazine, The Kitchn, Mind Body Green, The Coveteur, and Food52.