Endometriosis Awareness Month: The Truth About Diagnosis, Surgery & Pain

Endometriosis is as common as diabetes—but where’s the funding?

Endometriosis affects at least 10% of women, which is as common as the incidence of diabetes, yet it remains underdiagnosed, undertreated, and underfunded. In 2019, the NIH allocated just $6 million to endometriosis research, while diabetes received nearly $1 billion. That’s a 13,000:1 research funding gap for diseases that are equally prevalent.  Worse, according to the American Diabetes Association, the cost of diabetes to the US economy as of 2022 data was $412.9 billion.  Endometriosis, which is also associated with a high burden of disease due to its association with infertility, chronic comorbidities, utilization of healthcare services, pain medications, and antidepressants ultimately leads to an economic burden of $119 billion.

This is not just a women’s health crisis—it’s a public health failure.

On May 23, 2024, Congresswoman Nikema Williams (GA-05) introduced the Endometriosis CARE Act, calling for $50 million annually to:
✅ Advance research into endometriosis causes and treatments
✅ Fund a national study on racial and economic disparities in endo care
✅ Launch a public awareness campaign to combat misinformation
✅ Address barriers to treatment, including provider shortages and insurance gaps

(As of this writing, the status of and details into this funding is unclear, and I am looking into it.) 

ARPA-H Sprint for Women’s Health: Transformative Research on the Horizon

In 2024, ARPA-H launched its $110 million Sprint for Women’s Health, funding 23 projects designed to bridge critical gaps in research and innovation. Some key endometriosis-related projects that received funding include:
✅ The Washington University – Blood test for endometriosis pain diagnosis
✅ Aspira Women’s Health – First-of-its-kind non-invasive blood test to diagnose endometriosis
✅ A coalition between Nura Health, Dama Health, and Lasa Health – AI-driven precision medicine platform for personalized endometriosis treatments

These groundbreaking projects mark a major step forward, but advocacy and patient education remain essential to ensure funding translates into accessible, effective care.  Women struggle to navigate the complex healthcare system with a painful disease that many doctors simply do not understand.

Fempower Health has spoken with many experts on endometriosis, and below is a glimpse of important insights.

How to Get the Right Diagnosis for Endometriosis

Dr. Peta Wright describes endometriosis as an iceberg—what’s visible is only a fraction of what’s underneath. “Laparoscopic surgery is like the tip of the iceberg, and being told that endometriosis is the only cause of pain and the only thing you need to do about that is get a diagnosis and get it removed with surgery….I think that's really dangerous.”  Dr. Wright speaks about the impact of trauma and the need for addressing things such as the immune system and nervous system

Too often, patients are dismissed. How many times have women been told, ‘It’s just period pain,’ or ‘You’ll feel better after pregnancy?’ That’s gaslighting, and it’s unacceptable.

Key questions to ask your doctor about endometriosis:
❓Are there signs in my symptoms or history that make endometriosis more or less likely?

❓ If you suspect endometriosis, how do you decide when to move to surgery versus trying other treatments first?

❓If surgery as the best option, what are the risks if I wait versus moving forward now?

❓ What role do hormonal treatments play in diagnosis or management? And what are the risks and side effects associated with these treatments?

❓ How might inflammation, immune system involvement, and nervous system dysfunction play a role in my case?

Surgery: Excision, Ablation, and Choosing the Right Surgeon for Your Endometriosis

Dr. Shanti Mohling warns that not all surgeons are created equal. “Endometriosis surgeries are as complex as cancer surgeries, yet we don’t have a subspecialty for it. That means most gynecologists aren’t trained to perform deep excision” .

Some women experience pain post-surgery because deep pockets of disease were missed. “I’ve had patients come to me after multiple failed surgeries because the disease wasn’t fully removed. We have to do better.”

Key questions to ask your laparoscopic surgeon:
❓ How many endometriosis surgeries do you perform per week? How complex are your cases?

❓ Do you perform excision or ablation surgery?

❓ How many cases of endometriosis do you operate in a given month?  Do you operate on deep infiltrating endometriosis in the bowel, diaphragm, or bladder?

❓ What post-op care do you recommend to prevent recurrence and manage pain?

Why Pain Persists: The Role of Pelvic Floor Therapy in Helping with Endometriosis

Even after surgery, pain may remain due to nerve sensitivity, scar tissue, or muscular dysfunction. Caitlyn Tivy, DPT explains that chronic pain rewires the nervous system, making pain signals fire even when the original trigger is gone. Your nervous system has been in overdrive for years. Surgery doesn’t reset it—rehabilitation does. “In a perfect world, everybody would at least consult with a rehab professional post post surgery,” said Caitlyn Tivy.

Pelvic PT is crucial for managing chronic pain. It’s about retraining your muscles, nerves, and brain to stop signaling pain where there is no longer a physical problem.

Key questions to ask about pelvic PT for endometriosis:
❓ How does pelvic floor dysfunction contribute to my pain associated with endometriosis?

❓ What techniques can help me retrain my nervous system?

❓ Should I see a pelvic PT before or after laparoscopic surgery?

Your Health. Your Voice. Your Power.

Too many women are told their pain is "normal." Too many are dismissed. Too many never get the care they deserve.

🎙 Want deeper insights? Listen to these Fempower Health episodes:

✅ Margaret Melville – The silent epidemic of endometriosis

✅ Kate Boyce – Finding the right doctor & patient advocacy

✅ Dr. Shanti Mohling – Surgery myths & the realities of excision

✅ Dr. Caitlyn Tivy – Pelvic floor therapy & managing chronic pain\

✅ Dr. Peta Wright - Endometriosis is like an iceberg

Endometriosis Advocacy Events

📍 Endometriosis Summit | March 28-30 | Celebration, FL
📍 Endo Found Annual Conference | Feb 28 - Mar 1 | Lenox Hill Hospital, NYC

📚 Great Reads on Endometriosis

• Beating Endo: How to Reclaim Your Life from Endometriosis by Dr. Iris Orbuch and Amy Stein, DPT

• Heal Endo: An Anti-Inflammatory Approach to Healing from Endometriosis by Katie Edmonds

• Know Your Endo: An Empowering Guide to Health and Hope With Endometriosis by Jessica Murnane

• The Doctor Will See You Now: Recognizing and Treating Endometriosis by Dr. Tamer Seckin

💬 What questions have helped you advocate for better care? Drop them in the comments. ⬇️

Sources:

Eisenberg VH, Decter DH, Chodick G, Shalev V, Weil C. Burden of Endometriosis: Infertility, Comorbidities, and Healthcare Resource Utilization. J Clin Med. 2022 Feb 21;11(4):1133. doi: 10.3390/jcm11041133. PMID: 35207404; PMCID: PMC8880408.

American Diabetes Association, Statistics About Diabetes, Updated 2 November 2023.

Eisenberg VH, Decter DH, Chodick G, Shalev V, Weil C. Burden of Endometriosis: Infertility, Comorbidities, and Healthcare Resource Utilization. J Clin Med. 2022 Feb 21;11(4):1133. doi: 10.3390/jcm11041133. PMID: 35207404; PMCID: PMC8880408.

Seckin, Dr. Tamer, The Economic Burden of Endometriosis. 10, September, 2024.

Williams, Congresswoman Nikema, Congresswoman Williams Introduces Legislation to Make Critical Investments in Endometriosis Research, 23 May 2024.