Chronic Disease Coalition ambassador, Cait McDonough took over our social channels and blog to educate our community about Adenomyosis. During Adenomyosis Awareness Month, she highlights its symptoms, how to diagnose and much more. See more information below, or follow The Adeno Project (@theadenoproject) on Instagram to learn more.
What is Adenomyosis?
Adenomyosis is one of the most common diseases you may not have ever heard about. It is a benign disease of the uterus where the endometrium (inner lining of the uterus) invades the myometrium (muscular wall layers of the uterus). This affects individuals who identify as Assigned Female At Birth (AFAB). This can cause debilitating pain (pelvic, bladder/bowel, leg groin, back), pain with intercourse, heavy/prolonged periods, GI symptoms, bladder symptoms, fatigue, headaches, bloating among many more symptoms. Some may be asymptomatic.
How is it Diagnosed?
Adenomyosis is typically diagnosed based on symptoms. It may show on imaging (MRI, ultrasound) but for many, there may be no findings. It may be suspected based on how the uterus appears during pelvic exam or surgery, but now every individual will have an enlarged or “boggy” uterus. For Some, the uterus may appear as “normal.” The only definitive diagnosis is on histopathology of the uterus post-hysterectomy.
Treatment Options are Limited Depending on Access to Care
The only cure is a hysterectomy at this time. There are some surgical treatments that may be available depending on access to care (location, cost, specialist availability). Symptoms may be manageable with pain management, hormone therapy, surgical intervention (or all of the above). As each patient is so individual, treatment options may vary. For some, they may not have any relief of symptoms.
There is a Significant Lapse in Accurate Information and Support for Adenomyosis
Due to medical bias and stigma that exists surrounding pelvic pain, this has limited the amount of support and awareness that this condition receives. As of 2021, the NIH has allocated $0 annually in research funding for Adenomyosis. This lack of federal research dollars in the United States directly impacts the delay in diagnosis, lack of FDA-approved treatment options, limited specialists, lack of support and limited understanding surrounding this condition.
Donnez, J., Donnez, O., & Dolman 2018
National Institute of Health, RePORT – Research Portfolio Online Reporting, Estimates of Funding for RCDC System, 2021