Endometriosis is a widely misunderstood disease that affects at least 10% of women, girls and gender-expansive individuals (and even some CIS-gender men!).  It is estimated that approximately 200 million people suffer from endometriosis across the globe; over 400,000 of which live in New Jersey. More attention, awareness and legislation addressing the needs of people with endometriosis is desperately needed.

Currently, there are several women’s health bills pending in the New Jersey legislature that concern endometriosis; namely, A-3212, S-2772, A-3737, S-3393, A-3206 and S-2257.  While it appears that the intent behind these bills is good, the language used in the bills is highly problematic in 3 main ways:

1. endometriosis is incorrectly characterized as primarily a menstrual disorder;
2. it contains misinformation about the disease itself and its pathogenesis; and
3. it excludes the lived experiences of large categories of people who suffer from the disease.

These concerns are important because these inaccuracies perpetuate many harmful myths that have historically caused substantial harm to people with endometriosis.  Specifically, the language in these bills is likely to delay diagnosis for many patients, promote medical gaslighting, overlook or minimize the suffering of countless patients and, ultimately, contribute to poor medical care for endometriosis patients in our state.  

The time to act is now.  We do not believe that the legislators who are promoting these bills fully understand these issues or fully grasp the detrimental impact they will cause to New Jerseyans with endometriosis. Nonetheless, despite our opposition, this legislation is making its way through our legislature very, very quickly.  If you wait to make your voice heard, you risk allowing these bills to become law without being corrected to reflect proper information. 

Please sign this petition in order to encourage our legislators to ensure that the following concepts are accurately reflected in any legislation targeting endometriosis:

1. Endometriosis is defined as a chronic systemic, inflammatory disease, characterized by the presence of lesions that are similar to the lining of the uterus (or endometrium) throughout the body.
2. Endometriosis generally affects approximately 1 in 10 people of the female sex, transgender males and gender expansive individuals of all ages, including people of reproductive age, premenarchal adolescents and post-menopausal individuals.
3. No single theory definitively explains the cause and/or all mechanism of action of endometriosis, which remain heavily debated in the community.  It is likely that some combination of several processes are involved in the development and progression of this disease.
4. Symptoms and potential serious complications of endometriosis include, but are not limited to, the following: abdominopelvic pain; excruciatingly painful periods (called dysmenorrhea), pain with sexual intercourse (called dyspareunia); nausea; pain with bowel movements, diarrhea, constipation and/or other gastrointestinal symptoms; bowel constrictions or obstructions; painful abdominal bloating; pain with urination and other urinary/urogenital symptoms; silent kidney death; heavy periods (called menorrhagia) and/or unpredictable or otherwise abnormal menstrual cycles; pelvic floor dysfunction; otherwise unexplained infertility; chronic fatigue; brain fog; leg and lower back pain; collapsed lungs during menstruation (called catamenial pneumothorax) or coughing up blood (called hemoptysis) in patients with thoracic or diaphragmatic endometriosis; and more.
5. While there is currently no known way to definitively cure or prevent endometriosis, early diagnosis and appropriate treatment and symptom management are known to positively impact patient outcomes.

To take further action, we ask you to share this petition far and wide – you do not have to be a New Jersey resident to sign it!  And if you are a New Jersey resident, please consider asking your legislative representatives to oppose these bills unless/until they are amended properly.

THANK YOU for taking time to protect people with endometriosis in New Jersey!