LIVING WITH ENDO – WHAT IS ENDOMETRIOSIS?

LIVING WITH ENDO is a series dedicated to endometriosis awareness and the endo warriors looking for a place to feel heard and belong. These are my stories and experiences living with stage four endometriosis. With Food + Love the website and blog, does not intend to diagnose, treat, cure or prevent any disease. Please visit Endo What? for trusted professional care and information.

Illustration for Sher Castellano by © Brie Milam.

What is endo?

Endometriosis or endo, is a disease where tissue similar to (but not the same as) the lining of the uterus is found elsewhere throughout the body.

It causes pain, infertility, organ dysfunction and subsequent depression and anxiety. Endo is an invasive, complex, incurable disorder affecting the lives of one in ten girls and womxn (including trans, non-binary and non-conforming people).

For many, endo’s link to infertility makes this disease every bit emotional as it is physical. And despite the one hundred seventy-six million people affected by it worldwide, endo has no known cause or cure.

Illustration for Sher Castellano by © Brie Milam.

What are endo symptoms?

It takes an average of ten years and eight doctors to be diagnosed. The systematic dismissal of gynecological complaints, lack of technology to see the disease on imaging, and the rampant misinformation within the medical community is largely to blame. While physical exams and imaging can 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 routinely occur at any part of the cycle, and many experience symptoms that are chronic in nature. The following is a list of symptoms that endo patients experience.

organ dysfunction
infertility
pelvic pain
frozen pelvis
painful ovulation
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
bloating (endo belly)
fatigue

Illustration for Sher Castellano by © Brie Milam.

How is endo treated?

If you spend any amount of time researching endometriosis on the internet it will lead you to believe that it is easily treatable. But that couldn’t be farther from the truth. The gold standard treatment is excision surgery. With sixty percent of patients needing a minimum of two. These surgeries are costly, both monetarily and energetically with full recovery at sixty days. Nothing about this treatment process is easy.

Treating endo (surgery) and managing endo are different. It is important to understand that while managing endo helps relieve symptoms, it does not stop disease growth and subsequent organ dysfunction.

Often doctors will prescribe pain medications, hormone therapy and oral contraceptives to manage endo. But these have inconsistent effectiveness, and unbearable and potentially dangerous side effects. They are also not options for those trying to conceive. Holistic management like eating an anti-inflammatory diet, and reducing the chemicals in your food, body and home has shown to help reduce symptoms.

Other tools include therapy, pelvic floor therapy, acupuncture, massage, yoga, spending time in nature, CBD oil and cannabis. Although, these do not always provide consistent enough relief to patients (like myself). They also require privilege, dedication, time, education and resourcefulness which the majority of endo warriors do not have access to.

Illustration for Sher Castellano by © Brie Milam.

How I can spread endo awareness?

For many, endometriosis is . . .

Losing control over their body.

Living in chronic pain.

Grieving loss and the ability to conceive.

Living without reasonable treatment options.

If you love someone with endometriosis the best way to help is to be an ally. Listen and validate what they are experiencing is real and really hard. Because it’s very likely they’ve been told their whole lives what they’re experiencing is imaginative, or normal. And there’s nothing normal about endometriosis.

Another way to help is by taking a moment to sign this petition. It helps fund more research, and education for health care providers and policymakers. We are hopeful one day there will be diagnosis and treatment options that don’t require surgery or the robbing of our ability to reproduce.

If you have endometriosis I am here for you, and I hear you.