One in ten women have endometriosis, a disorder in which the tissue that normally lines the inside of the uterus grows on the outside. And that's just those represented by official statistics, not necessarily accounting for trans, non-binary, and gender non-conforming people, nor those who haven't yet been properly diagnosed. Though endometriosis causes a broad scope of uncomfortable symptoms and significant bodily pain, it is somehow so unfamiliar to so many of us and often goes misdiagnosed for years.
Jessica Murnane of One Part Plant is on a mission to encourage more awareness and understanding of endometriosis, and to support those who experience it with as many tools and insights as possible, via her newest project called Know Your Endo. Below, she shares the key facts we need to know about the chronic condition. (And there's plenty more support where this came from, over on the Know Your Endo site.)
On your website, you explain that it takes an average of ten years and eight doctors to receive an endometriosis diagnosis. Why?
I think there are a few factors that contribute to this. For starters, it can take a significant amount of time for some patients and doctors to connect the dots in terms of symptoms. Bowel and bladder issues are common for people with endo. But these aren't issues you'd usually bring up when visiting your gynecologist because they aren't considered "period symptoms".
Another factor is that in general, women's pain is not taken seriously enough. You don't know how many people with endometriosis are told "it's just a period" or "it's in your head." After a while, the pain and symptoms become their norm or they feel so dismissed they begin to keep their pain and symptoms to themselves.
These reasons are why education and awareness is so key. It's one of our missions of Know Your Endo.
When does endo typically develop, and what is the average age of diagnosis?
Endo can develop as soon as the reproductive years begin, and a woman can experience symptoms as an adolescent. Most women are not diagnosed until their mid- to late twenties.
What are some incorrect assumptions people make about living with endo?
I think the biggest misconception is that women only experience symptoms during their period. This isn't the case. A lot of women experience symptoms all month long, including fatigue, bloating, GI issues, painful sex, and urinary issues. This is why it's so critical to create tools to help manage pain and symptoms naturally all month long, not just one week out of every month.
There is also a misconception that women with endo will never have children. But many of them do. In our Ask A Dr. section on Know Your Endo, Dr. Karli Goldstein explains this further: "50% or more of patients with unexplained infertility will have endometriosis. Endometriosis definitely causes subfertility (reduced fertility). We don't know for sure what causes this subfertility. We do know that endometrioma in the ovary suppresses ovarian function. We do know that adenomyosis in the uterus can cause higher-risk of fertility problems. However, it is possible to get pregnant with all of these things. Undiagnosed and untreated endometriosis will decrease your fertility. It's important to consider to be proactive about your fertility. This may mean meeting with a fertility specialist and making sure to get proper endometriosis treatment and a management plan in place. It's worth a conversation and being proactive about your fertility. There are options."
What are the long-term impacts of endo?
In cases that aren't treated and managed properly, it can impact a woman's career, relationships, and quality of life. In some cases, endo can grow onto a woman's bowels, rectum, and even lungs. You can imagine how disruptive this can be. For some women, there can also be psychological effects of being in constant pain and/or discomfort. Personally, I suffered from serious depression from the chronic pain and pills my doctor prescribed to me.
But it's not all gloom and doom! There might not be a cure, but there are ways to treat and manage this disease. A proper excision surgery combined with diet and lifestyle tools can help a lot of women thrive.
Let's be clear, there is no magic pill for endo. You must put in the work to make changes in your life. And this requires putting yourself and your health first, which to some might sound incredibly selfish. But if we're not taking care of ourselves, how can we possibly take care of the people we love most in our lives? That mental shift is something we address in our Endo Toolkit program. We understand that it's hard for so many of us to put ourselves first!
How can women with teenage girls help them navigate a diagnosis?
It's so important to know the symptoms, not just for their daughters but for themselves. There are women with teenage daughters who have yet to be diagnosed themselves! I grew up with a mom who was undiagnosed. Her periods were brutal and she had chronic inflammation. So this became my norm for my periods, too. Because of this, I wasn't diagnosed until I was 28 years old.
I encourage all women to know the symptoms. One in 10 women have endo, so it's pretty likely you know someone who has it. We created Know Your Endo not only for women with endo, but also as a resource for their friends and family to understand this condition better.
And if you already know you have endo or suspect it, find a specialist who is open to discussing diet and lifestyle tools in addition to conventional management plans. You'd be surprised how many doctors just throw pills and painkillers at a women and call it a day. These are not treatment plans.
There are some pretty incredible doctors out there. Keep trying until you find the one who's right for you and truly understands this condition.