Pain Isn’t “Normal”: Understanding Adenomyosis and Endometriosis

For many women, pain is normalized, dismissed, or misunderstood. But conditions like adenomyosis and endometriosis are not rare, and they are not “just bad periods.” 

At the SHE+ Foundation, we believe understanding these conditions is a critical step toward earlier diagnosis, better care, and systemic change. 

What is Endometriosis? 

Endometriosis occurs when tissue similar to the lining of the uterus grows outside of the uterus, often on the ovaries, fallopian tubes, or other pelvic organs. 

Common symptoms include severe menstrual cramps, chronic pelvic pain, pain during sex, infertility,  and gastrointestinal symptoms like bloating, nausea, or constipation. Endometriosis affects approximately 1 in 10 people of reproductive age globally (World Health Organization, 2023).

What is Adenomyosis? 

Adenomyosis occurs when endometrial-like tissue grows into the muscular wall of the uterus. This leads to inflammation, uterine enlargement, and often intense pain. 

Common symptoms include heavy or prolonged menstrual bleeding, severe cramping, pelvic pressure or fullness, and painful periods that worsen over time. Adenomyosis is historically underdiagnosed, but emerging research suggests it may affect up to 20–35% of women, particularly those in their 30s and 40s (Vannuccini & Petraglia, 2019).

Feature	Endometriosis	Adenomyosis
Location	Outside the uterus	Inside the uterine wall
Pain Type	Often widespread pelvic pain	Often centralized uterine pain
Bleeding	May be irregular	Often heavy and prolonged
Diagnosis	Often requires laparoscopy	Often seen via ultrasound/MRI
Fertility Impact	Strongly associated with infertility	Can impact fertility, but less studied

Why These Conditions are Often Missed

Both adenomyosis and endometriosis share a common barrier: systemic dismissal of pain.On average, it takes 7–10 years to receive a diagnosis of endometriosis (Nnoaham et al., 2011). Adenomyosis is often diagnosed even later, or only after hysterectomy.

Contributing factors include the widespread normalization of menstrual pain, a lack of provider training in recognizing and treating pelvic pain conditions, limited access to appropriate imaging and specialized care, and persistent gender bias within healthcare systems. Together, these barriers delay diagnosis and treatment for countless individuals, making this not just a clinical issue, but a broader public health failure.

Why It Matters

When these conditions go undiagnosed, the consequences extend far beyond physical symptoms. Pain can become chronic and increasingly difficult to treat, mental health outcomes often worsen, fertility options may be impacted, and overall quality of life declines. 

For many, however, the deepest harm is not just the condition itself, but the experience of not being dismissed. 

At SHE+, we advocate for earlier screening and recognition of pelvic pain disorders, increased funding for research on adenomyosis and endometriosis, comprehensive training for providers in trauma-informed, patient-centered care, and expanded access to diagnostic tools and specialists, because pain should not be a prerequisite for care. Adenomyosis and endometriosis are different conditions, but they are connected by a shared reality: they are common, they are complex, and they are too often ignored.

Understanding the difference is not just about education, it’s about ensuring that people receive the care, validation, and treatment they deserve.

References

• Nnoaham, K. E., Hummelshoj, L., Webster, P., d’Hooghe, T., de Cicco Nardone, F., de Cicco Nardone, C., Jenkinson, C., Kennedy, S. H., & Zondervan, K. T. (2011). Impact of endometriosis on quality of life and work productivity. Fertility and Sterility, 96(2), 366–373.

• Vannuccini, S., & Petraglia, F. (2019). Recent advances in understanding and managing adenomyosis. F1000Research, 8, F1000 Faculty Rev-283.

• World Health Organization. (2023). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis