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Writer’s note: I use the word “women” in this piece to reference people who can have endometriosis, but I understand it isn’t 100 percent inclusive, and inclusion is important. Endometriosis also affects some transgender, nonbinary, and gender-nonconforming people.
People don’t generally get excited to talk about the symptoms of their incurable illness, but mine is one of my favorite topics. Don’t get me wrong, I don’t lead with it when I meet a new person at a party, or accost people on the street with this information. But I do jump at the chance if I even get a whiff of someone showing interest in my stage 4 endometriosis.
I’m not excited to share because the symptoms are fun and exciting — they’re not — but because the information is an opportunity to change someone’s life. Although 1 in 10 women suffer from endometriosis, many have never heard the word before, let alone know the symptoms. Before we dive deeper into symptoms and treatment options, let’s talk about what exactly endometriosis is.
Endometriosis is a disorder where the tissue that normally lines the inside of the uterus grows on the outside. It usually involves the ovaries, bowel, or the tissue lining the pelvis, though sometimes it can spread beyond the pelvic region. During a menstrual cycle, this displaced tissue thickens, breaks down, and bleeds. Because the tissue has no way to exit the body, it becomes trapped. This can lead to cyst formation, adhesions, and pain.
As I mentioned, about 1 in 10 women have endometriosis. That’s an estimated 176 million worldwide. With that staggering number, there must be an amazing system in place to educate about, diagnose, and treat endometriosis. Right?
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Wrong. It takes an average of eight doctors and 10 years for a woman to be diagnosed with endometriosis. Imagine having a chronic condition for 10 years; going to countless doctors and being told that your pain and symptoms are just in your head; and being misdiagnosed with everything from appendicitis to colon cancer, irritable bowel syndrome (IBS) to sexually transmitted diseases.
Do you see why I get excited to talk about this? If women knew the signs and symptoms of endometriosis, they could get diagnosed sooner, begin to manage and treat the disease, and avoid complications and health issues connected to this disease. And, let’s be clear, endometriosis doesn’t just affect women during their periods; the symptoms can be debilitating all month long. Endometriosis can affect careers, relationships, and overall quality of life.
Someone with endometriosis might experience one or all of the symptoms listed in “Common Symptoms of Endometriosis,” below. The number of symptoms is less relevant than their severity — one symptom might be enough to disrupt your everyday life and activities.
The first time I saw a list of endometriosis symptoms, my condition became so clear. I had dealt with painful and unexplained health issues for over two decades, and within seconds of reading the list, all of those issues made sense to me.
For example, before being diagnosed with endometriosis, I was diagnosed with IBS by three different doctors. It’s reported that 90 percent of women with endometriosis have gastrointestinal (GI) symptoms, which may lead doctors to misdiagnose the source of the symptoms.
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Dr. Karli Goldstein, a gynecologic surgeon specializing in endometriosis, explains that the things that immediately surround the uterus and ovaries are the bowel and the bladder. The uterus’s proximity to the bladder and gastrointestinal tract leads to GI symptoms in many cases, because “when disease causes scar tissue and inflammation, it’s going to cause problems for [the organ’s] neighbors as well,” Goldstein says. “Oftentimes, bowel symptoms can be a sign of endometriosis.”
It’s understandable that these GI symptoms would be overlooked and misdiagnosed. If you’re experiencing GI issues, chances are your first call wouldn’t be to your gynecologist — it’d be to your general practitioner, who would refer you to a GI specialist. The same can be said for other non-menstrual endometriosis symptoms, including fatigue, allergies, immune issues, and bladder issues. And, sadly, even if you do share your symptoms with your gynecologist, it’s not a guarantee that your pain and symptoms will be taken seriously. Years before my endometriosis diagnosis, I told a doctor that it was painful when I had sex, and she responded that I needed to relax more in bed.
This is all sounding pretty bleak. But it’s not — things are changing! Doctors are becoming more educated about this disease. There’s more awareness surrounding endometriosis. And, most importantly, women are becoming more vocal about their symptoms and more persistent about receiving the care they need and deserve.
Searching for Solutions
Noticing the signs of endometriosis is hard enough; finding the right treatment and management plan can be even harder. After I was diagnosed, I went through a hellish journey of treatments that included ablation surgeries, painkillers, and at least four different birth control pills to manage my symptoms. Nothing seemed to work. I not only felt no relief, but I fell into a deep depression from living with my chronic pain and symptoms. I didn’t want to wake up in the morning — being awake meant being in pain.
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At my lowest point, my doctors said they were out of solutions to help me and suggested I either do aggressive hormone therapy or get a hysterectomy. I chose the latter. Yes, it’s a life-altering surgery, but that was the point: I wanted to change my life. I could no longer live the way I was living. But before getting the surgery, a miracle happened. I received an email from a friend that changed my life forever. She suggested I try changing to a plant-based diet.
I can call it a miracle now, but at the time, I was pretty mad at her for even suggesting that a diet change was all I needed.
If changing my diet could help me, why hadn’t my doctors told me this? Also ... no meat? No cheese? No candy? Candy was a major food group for me back then. I had zero faith that the diet would work, and whatever-is-less-than-zero faith that I could actually stick to whatever this plant-based regimen was. But I also had nothing to lose, so I committed to trying it for three weeks.
Building an Endo Toolbox
Within weeks of beginning my plant-based diet, my pain began to fade. After a month, my fatigue eased, and I had more energy. So I decided to stick with the diet, and within three months, I was a completely different person. I finally got a handle on my depression. I felt the best I’d ever felt — and I told my doctors that I didn’t need that hysterectomy after all.
The improvement wasn’t just because of the diet: I developed a whole new set of management tools to go with the foods I was eating. Because I was able to get out of bed, I could exercise again. Exercising helped me have a clearer head. And having a clearer head allowed me to manage my stress better. Diet was simply the first tool in my new endo toolbox.
None of this happened overnight. I had to teach myself how to cook plant-based meals that tasted good to me. I had to figure out how to navigate holidays and social situations while maintaining my new lifestyle. I had to accept that candy was no longer my friend. It was a big adjustment, and it’s something I still work on every single day. In the beginning, some of that work felt impossible to do; I thought living in pain might be easier than making changes. But every day, those changes got easier, and now most of that “work” isn’t work at all — it’s just my norm.
Spread the Word
There is no cure for endometriosis; no amount of green juice or yoga is going to take away the disease. A plant-based diet worked to ease my pain and fatigue, which allowed me to adopt other management tools, but what worked for me may not work for you. Research the management tools you can try, and join me in helping people living with endometriosis to have more good days than bad.
I encourage you to call, text, email, and share these symptoms today with at least one woman you know. The information could truly change her life.
Common Symptoms of Endometriosis
- Pain, including extreme menstrual cramping; chronic pelvic, lower-back, abdominal, or leg pain; pain during or after sex; painful bowel movements or urination
- Excessive bleeding, either as heavy periods or spotting between periods
- Gastrointestinal symptoms, including bloating; nausea and vomiting; diarrhea; constipation
- Urinary frequency, retention, or urgency
- Allergies and other immune-related issues are also commonly reported
There is no cure for endometriosis, though a range of management and treatment techniques have been developed.
For symptom management, over-the-counter pain relievers, such as ibuprofen or naproxen sodium, may ease painful menstrual cramps. Hormone therapy in the form of hormonal birth control pills, patches, or injections may offer pain relief by controlling hormone fluctuations. Hormone blockers — including gonadotropin-releasing hormone agonists and antagonists, and aromatase inhibitors — temporarily induce menopause, which can limit the growth of extrauterine endometrial tissue. Hormone therapy may affect fertility, and typically comes with side effects that may be undesirable.
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To treat endometriosis, doctors may recommend ablation surgery, in which endometrial tissue is destroyed with lasers. Laparoscopic surgery is another minimally invasive option. In some cases, a hysterectomy or oophorectomy (removal of the uterus and ovaries, respectively) may be performed, but endometriosis experts now prefer to carefully remove excess endometrial tissue instead, because endometriosis pain can continue even after a hysterectomy. Also, women who wish to become pregnant cannot opt for a hysterectomy.
Symptom management is a short-term option. Excess endometrial tissue must be excised to protect other organs from damage, and the sooner you can get it removed, the better.
— Caitlin Wilson
Jessica Murnane is the author of the One Part Plant Cookbook and host of the One Part Podcast, which you can find online at JessicaMurnane. She’s also the founder of Know Your Endo, an endometriosis education and awareness platform.