Endometriosis Awareness

After 20 years of being dismissed, I was finally diagnosed with stage 4 endometriosis this past November. The pain I had been experiencing since age 12 wasn’t just “bad periods.” It was systemic inflammation, full-body flare-ups, and a worsening of my cerebral palsy that doctors refused to take seriously. The result was my organs adhering together, and me getting carved out like a pumpkin at 32.

What is Endometriosis? 

A disorder in which tissue similar to the tissue that lines the uterus grows outside the uterus in places where it doesn't belong. These deposits of tissue act like the tissue lining the uterus, but develop outside the uterus. 

This tissue thickens, breaks down, and bleeds with each period. Because the blood has no way to leave the body, it becomes trapped. The trapped blood then forms scar tissue and can adhere organs together.

What are the effects of Endometriosis? 

Painful periods can happen with endometriosis. There may be heavy bleeding or pain during sex, pain when having a bowel movement, and pain urinating. Having trouble getting pregnant is also common with endometriosis.

What does Endo feel like?

Hell. Endometriosis is different for everyone, but personally, I experience extreme abdominal pain, lower back pain, leg pain, and cramping throughout my menstrual cycle, not just during my period. Furthermore, endo causes severe inflammation throughout the entire body, (not just the abdomen)  which exacerbates my cerebral palsy, causing more spasms whenever I’m in pain.

How is Endometriosis diagnosed?

The only definitive way to diagnose it is through laparoscopic surgery. A procedure where a camera is inserted into the abdomen to look for and remove endometriosis tissue.

Getting an Endo diagnosis.

On average, it takes 7-10 years to be properly diagnosed with endo due to dismissal of symptoms and lack of awareness. For me, it took 20 years & 10 doctors to finally recieve a proper diagnosis, despite having a family history of endo and extreme symptoms since age 12. 

What are the stages of Endometriosis?

Endo is classified into four stages according to the number of lesions and depth of infiltration:  

• Stage 1 (Minimal):  Few small lesions, little to no scar tissue.

• Stage 2 (Mild):  More lesions, shallow implants, possible minor scarring.

• Stage 3 (Moderate):  Deeper implants, cysts (endometriomas), and more scar tissue.

• Stage 4 (Severe):  Widespread disease, deep infiltrating endo, large cysts, and organs potentially fused together.

What are the categories of Endo?

The staging system has limitations and doesn’t always reflect symptoms or fertility outcomes. The Endometriosis Foundation of America (Endofound.org) proposes a classification based on anatomical location and infiltration level.

• Category I: Peritoneal endometriosis

• Category II: Ovarian Endometriomas 

• Category III: Deep Infiltrating Endometriosis I 

• Category IV: Deep Infiltrating Endometriosis II 

What my surgery found

After 20 years of being dismissed, I was diagnosed with Stage 4 Endometriosis & Deep Infiltrating Endometriosis (Category IV). I had Endometriosis throughout my pelvis, affecting my uterus, rectum, bladder, bowels, and pelvic sidewalls.  Because it was left untreated for so long, scar tissue (adhesions) had actually fused my organs together.

Why does it take so long for a diagnosis?

• Medical sexism;  Women's pain is often dismissed or misdiagnosed as "normal period pain." There are more studies on male pattern baldness than endometriosis, despite it affecting 1 in 10 women.

• Lack of research funding;  Endo gets a fraction of the research dollars of other conditions 

• Poor diagnostic tools;  Non-invasive tests do not yet exist, forcing people to wait years for surgery, if their doctor even believes them.

How do I manage my Endometriosis?

There is no cure for endo, but I’ve found ways to manage my symptoms since I’ve had my surgery.

• Naturopathic treatment: Regular visits for acupuncture, cupping, gua sha, & supplements

• Pain management: Heat therapy, prescription pain meds, TENS units, cold packs, massage theragun, and castor oil packs

• Dietary changes: Anti-inflammatory diet, magnesium, turmeric, and omega-3s

• Supplements: Green tea extract, pycnogenol, NAC, turmeric, ginger  

How Trump’s DEIA Order Threatens Women’s Health & Endo Research

Trump’s executive order to end DEIA (Diversity, Equity, Inclusion, & Accessibility) programs puts research into diseases like endometriosis at risk, affecting the country's most vulnerable groups by:

• Slashing, or in some cases completely denying funding for women’s reproductive health research and treatments 

• Fewer grants for studying diseases that impact women, people with disabilities, & minorities

Endometriosis research was already underfunded. Now it’s in even more danger. The executive order to end DEIA is actively causing setbacks in the progress of creating better diagnostic tools & treatments. The order also forces some government agencies to remove health research from their websites, which can be detrimental to health literacy & diagnosis. 

Read more about my experience with endo

I have a Disability & Art Blog where I use my skills as an artist to convey the challenges of living with disabilities in a way that everyone can understand, regardless of their abilities. For my endo piece, I included all of this information, plus images from my surgery, and resources for help.

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