LIVING WITH ENDO – WHAT IS ENDOMETRIOSIS?

What is endo?

Endometriosis is a disease where tissue similar to (but not the same as) the lining of the uterus is found elsewhere throughout the body. This tissue is invasive and destructive. It causes pain, infertility, organ dysfunction, and subsequent depression and anxiety because of its chronic nature.

Endo is complex and incurable, and affects the lives of one in ten women (including trans, non-binary and non-conforming people). Despite the millions affected worldwide, endo has no known cause or cure. And, its link to infertility makes this disease every bit emotional as it is physical. 

What are endo symptoms?

It takes an average of ten years and eight doctors to be diagnosed. And there’s many reasons for this. However, the systematic dismissal of gynecological complaints, lack of technology to see the disease on imaging and rampant misinformation within the medical community is largely to blame. While physical exams and imaging could give insight into whether or not a person has endo, the only way to definitively diagnose endometriosis is through excision surgery and a biopsy.

Endo is not dysmenorrhea (menstrual cramps). Endo symptoms are chronic in nature, and they occur at any part of person’s cycle (not just doing their period). Here’s a comprehensive list of endometriosis symptoms a person can experience.

pelvic pain
frozen pelvis
abnormally painful menstruation
abnormally painful ovulation
organ dysfunction
infertility
depression
anxiety
abdominal pain
lower back pain
leg pain
headaches or migraines
pain with sex
bleeding with sex
painful bowel movements
frequent urination
burning urination
constipation
diarrhea
nausea
vomiting
extreme bloating (endo belly)
fatigue

How is endo treated?

Because the internet leads us to believe that endo is easily treatable, it’s important to understand this myth and the few options we actually have. The gold standard treatment is excision surgery (by an excision specialist), and sixty percent of patients will need a minimum of two.

Excision surgery is costly both monetarily and energetically, with a full recovery at sixty days or longer. Nothing about this treatment process is easy. As a result, many delay these necessary surgeries or forgo them altogether because they prove too difficult and financially burdensome.

How is endo managed?

Firstly, it’s important to understand the distinction between treatment and management. Secondly, it’s vital we understand how to use them together to minimize symptoms and spread of the disease. As we know, the best treatment option is excision. And the next best thing are, management tools.

Doctors often prescribe pain medication, hormone therapy and oral contraceptives as tools. However, they’re inconsistently effective, have unbearable, dangerous and irreversible side effects, and while they’re quieting symptoms often the disease is still spreading. They’re also not viable options for those trying to conceive.

In addition to eating an anti-inflammatory endometriosis diet, reducing the chemicals in your food, body and home have shown to help reduce symptoms. Other tools include therapy, pelvic floor therapy, acupuncture and massage. As well as yoga, spending time in nature, CBD and cannabis (where legal).

While management tools may improve your symptoms, it’s important to remember that the disease itself may still be progressing (even without symptoms present). Although more importantly, these tools require privilege, dedication, time, energy, education and resourcefulness that the majority of endo warriors do not have access to.

How can I spread endo awareness?

For many, endometriosis is losing control over their body and living in chronic pain. It’s grieving loss and the ability to conceive and living without reasonable treatment options. Because no two endo cases are the same it’s crucial to acknowledge that what’s best for one person may not be best for someone else.

If you’re new to this disease, this information can be overwhelming. However the Center for Endometriosis Care is an excellent resource. In my opinion they’re leading the way for endometriosis care in the United States. I especially like it for its transparency, since it’s not backed by big pharma (like The Endometriosis Foundation of America is).

If you love someone with endometriosis the best way to help is to listen, because what they’re experiencing is real and really hard. Because it’s quite likely they’ve been told their whole lives that what they’re experiencing is imaginative, or normal. And there’s nothing imaginative or normal about endometriosis.

Another way to help is to take action is by signing this petition. It’s a bipartisan effort to fund more research and education for health care providers and policymakers. We’re hopeful one day they’ll be diagnosis and treatment options that don’t require surgery or the robbing of our organs and ability to reproduce. If you or someone you love has endometriosis, I would love to hear from you – feel free to send me a message anytime.