Petition: Support Women’s Healthcare: Recognize Adenomyosis & Endometriosis ~  Fund Research, Raise Awareness, & Improve Care  

To: The Honorable Members of the United States Congress and Senate, the National Institutes of Health (NIH), Department of Health and Human Services, and the Department of Education

1 out of 10 women suffer from adenomyosis – a chronic condition where the tissue from the inner lining of the uterus (endometrium) grows into the muscle wall of the uterus. The only cure for adenomyosis is a hysterectomy, which doctors are often hesitant to preform to child-bearing age women, especially without first trial-testing multiple hormonal treatments as the birth control pill, the coil, and the patch.

Likewise, 1 out of 10 women suffer from endometriosis – a chronic, systematic whole body neuro-inflammatory disease where tissue similar to the uterine lining grows outside the uterus, possibly effecting multiple organ systems. It’s important to note that this endometriosis is biologically abnormal tissue - it’s estrogen dominant, progesterone resistant, with cancer-like mutations, and enhanced adhesion able to adhere organs together. Normal endometrium does not behave this way. There are no known causes and there is no cure, with most women taking 7-10 years in order to get a correct diagnosis – only laparoscopic excision surgery.

Both disorders of the endometrial tissue often coincide causing debilitating chronic pelvic, abdominal, or back pain. Struggles with infertility, painful and/or heavy periods, pain during intimacy, bloating, nausea, deep hip/leg or sciatica pain, chronic fatigue, IBS-like and bladder symptoms, ”endo-belly”, and migraines are all too common for women who live with adeno and endo.  It’s important to stress these conditions are not rare, 200 million women worldwide are suffering, and they’re often dismissed and misdiagnosed with patients being sent to GI doctors, physical therapy, or orthopedical specialists as first lines of defense – accumulating unnecessary costs.  Research, funding, and access to women’s healthcare is desperately needed and necessary for women’s health conditions, in order to prevent a systematic failure of diagnosis delay.

We, the undersigned, call on you to recognize:

1. Recognize and support the Endometriosis CARE Act 2024 this go around – new discoveries and solutions found by funding this research would be life-changing for those suffering with endo. Women not being tethered to the couch with a heating/pad in pain are women that are better equipped to be a moving force within their communities, to support their families, be strength within the workforce, all benefitting and stimulating the local economy as well as the patient.  

H.R. 6682 — 119th Congress: Endometriosis CARE Act.”   <https://www.govtrack.us/ congress/bills/119/hr6682>I

2. Add and ensure educational language to increase knowledge of endometriosis and adenomyosis to health education in the public sector, both taught within the schools systems as well as state health departments websites. Knowledge is power, and with girls as young as 12 years old suffering from these conditions, this additional curriculum and understanding would help promote body literacy as well as help break the stigma surrounding menstrual and reproductive health.

3. Mandate education and training for front line providers (gynecologists, family doctors, pediatricians, emergency clinicians, physical therapists, ortho) to improve recognition and management, while reducing diagnostic delay. This would also help decrease the patient-case overload in the medical sector, reducing countless unnecessary appointments and surgeries with doctors that aren’t properly specialized in these conditions.

4. Improve access to healthcare services, including availability to endometriosis excision specialists and care at specialized surgical centers, as most OBGYN’s aren’t trained to excise endometriosis (or even recognize it).  Patients are striving for honesty/transparency about both surgical training and prior experience, as statistics show that majority of women go through repeat surgeries and require more resources and care than is currently available. It’s important to note, most endometriosis cannot be seen on ultrasound/MRI, is only found by specialist surgery, yet patients are often discharged after a “normal scan”.

Being both a working mom and wife trying to find my footing on navigating this journey that often feels isolating, I joined many women’s health groups online for support, and it was easy to see that there’s a need within communities world-wide to help answer medical questions and find/provide viable pathways to a life that isn’t filled with pain. We urge you to support us on this journey to better women’s healthcare, and in turn, our livelihoods and the footprint we’re able to leave on this Earth.

Thank you for your support,