The Fight for Care: Navigating an Endometriosis Diagnosis in Indiana

Written by:

Jordan Finch, Women4Change Intern, Medical Student and Future M.D./ OB-GYN

Claire Farrington, Women4Change Intern

Aimee West, Women4Change, Vice President, Communications and Development

Women4Change often hears from Hoosiers facing crises and though our organization is not a direct service provider, we find ourselves serving as an intermediary, determined to seek out the experts who can help. At our very core, it is because of the continual and compounding crises Hoosiers are experiencing in the face of a changing Indiana, that our work at the Statehouse and in Indiana communities to address them is so important.

*Jordan Finch, Medical Student, Future OB-GYN, and Women4Change Intern*

March serves as National Endometriosis Awareness month, and when fellow Hoosier Benny Singh reached out to Women4Change on behalf of his fiancé’, Priscilla Massey, who has been facing down the complicated and painful diagnosis of endometriosis, after years of ambiguity and dismissals, we knew we needed to clear the way for Hoosiers’ experiences and navigating an endometriosis diagnosis. We knew exactly the right expert to help Priscilla make sense of hers and she was already on our team: Women4Change Intern, Jordan Finch, soon-to-be OB-GYN, M.D.

We put Jordan in touch Priscilla to better understand and help navigate her experience. More broadly, as it relates to endometriosis and the myriad of other complex healthcare challenges Hoosier women are facing, we are working to connect the scattered care dots for others experiencing the same and to bring the bottom up faster with the aim of helping others avoid the same medical navigation vacuum that Priscilla and so many others have experienced along the way in dealing with endometriosis.

What is endometriosis?

Endometriosis is a relatively common condition, affecting approximately 10% of women in the United States between the ages of 15 and 44. Endometriosis is defined by the American College of Gynecologists as “a condition in which the type of tissue that forms the lining of the uterus (the endometrium) is found outside the uterus”. Although the growth of endometrial tissue in endometriosis is non-cancerous, the inflammation that results from the implantation of endometrial tissue in other places causes symptoms that can range from minimal to debilitating. Despite its widespread prevalence, gaps in knowledge still exist surrounding its cause and how to adequately treat it. (IN-ACOG)

Meet Priscilla Massey

*Priscilla Massey and her fiancé’ Benny Singh (Photo: provided)*

Priscilla Massey, an Indiana native, earned a bachelor’s degree in human biology from Indiana University, is a proud member of the Phi Mu Chapter, and a self-proclaimed “crazy Dachshund lady”. She is Hoosier living with endometriosis and her fiancé Benny.

Fighting for loved ones to be heard and receive the care they need

“As we move from a culture of paternalistic medicine to engaged patient care, there remains a need for a systematic approach to encourage patients and families to play a more active role as partners in improving outcomes.”-National Library of Medicine, 2021

The most important way partners and family members can be supportive of their loved ones is to believe them. Benny believes Priscilla. Another important way for family members to be supportive of their loved ones experiencing a confusing diagnosis is to fight for them to be heard, to listen, record, and reflect back what providers are say, and to serve as a validating force in their partner’s journey to not only improve health outcomes for their partner, but to improve their own quality of life, together.

Women4Change asked Benny about what it has been like navigating Priscilla’s diagnosis in Indiana, a state 39th in women and children’s healthcare (American Health Rankings, 2023), and frustrated with the level of care Priscilla has received and overall Hoosier healthcare access, not mincing words (and in his own words), here’s what he said:

“Years ago, Indiana’s healthcare seemed strong and world renowned. Born and raised in Indy, I took pride in the strength of our medical care. I remember when I was a student at IUPUI, the talk on campus for a while was about how an all-star Indian Cricket player was down the street for cancer treatment. If an overseas sports superstar comes to Indiana for medical care, our healthcare system must be doing something right....or the maybe it was just the marketing team?

Priscilla's experience has taught me that the system drives the treatment. No matter how "advanced" medical care is in Indiana, it's only as good as your access to it, and it's even further out if you're a woman. I expected nothing more from a red state, but at the very least, I was confident that a female doctor in Indiana would have sympathy and over-the-top support for a fellow female going through something as challenging as what Priscilla is facing, but I couldn't be more wrong. Frankly, there aren't enough doctors in Indiana with real compassion, real devotion towards improving the quality of life for Hoosiers. I have some questions as to why they chose to go to school for 8 more years and $250K of debt.

Throughout Priscilla's journey, Indiana healthcare providers have definitely frustrated me with their lack of guidance or bedside manners towards her, but in hindsight, I almost feel bad for those doctors, nurses, and front desk receptionists. Perhaps they're merely the workers in an overarching broken system, stemming from a broken government flooded with corporate financial interest. But one thing is for sure, Indiana lawmakers and big money can throw their political weight around all they want, but being a good doctor is free of charge and government-proof.”—Benny Singh, Indianapolis

Priscilla’s voice and endometriosis journey timeline

During a trip to Brazil in 2015, Priscilla’s health started to decline significantly. She experienced burning pain in her lower abdomen “accompanied by severe nausea and unexpected episodes of vomiting”. Local doctors and a gastroenterology specialist in Brazil attributed these symptoms to anxiety, but Priscilla knew there was a bigger problem at hand. Upon returning to the U.S. Priscilla’s pain persisted and new symptoms began to disrupt her daily life, but doctors minimized and dismissed her concerns.

In 2021, Priscilla underwent an emergency procedure to remove her appendix. Post-surgery, her pain continued, and Priscilla asked her doctor to be referred to an OB-GYN. Despite her hope that she would soon find solutions, Priscilla found that her concerns were downplayed once again. She was told she was overreacting and that her symptoms did not align with those of endometriosis. After examining potential solutions Priscilla decided she wanted to get a laparoscopic procedure which her OB-GYN made her feel guilty about seeking, further invalidating her pain.

Despite this, in 2022 Priscilla proceeded with this procedure which found endometriosis throughout her reproductive organs and surrounding tissues, including her uterus, bladder, ovaries, colon, and rectum. Sadly, the efforts to treat and burn off her endometriosis only made her symptoms worse. “The months following the procedure were filled with unimaginable suffering, leading me to visit the emergency room multiple times. My last visit was the final straw, as I experienced medical PTSD from the unimaginable pain, gaslighting, and dismissal I endured. I was left alone in my hospital bed for hours, crying and in pain, while the medical staff laughed and conversed loudly at the nurses’ station.”

After this experience, Priscilla sought a second opinion from another OB-GYN, who suggested she go back on birth control, and she knew this was not the best option for her and was left feeling helpless once again.

Determined to find a better solution, Priscilla was referred to a third OB-GYN with a background in endometriosis surgery. Finally, she found someone with expertise who listened to her concerns with compassion and empathy. In 2023 Priscilla underwent yet another surgery. Priscilla’s new OB-GYN found that her endometriosis had spread throughout her reproductive system.

Even after this surgery, Priscilla still experiences chronic pain, chronic fatigue, and joint and muscle pains that can be extremely debilitating. She laments what her life could have been like: “I’m disappointed in my quality of life; endometriosis has robbed me of my life. It’s very challenging, every single day I must wake up and think about how I am going to spend my energy.”

As a result of her endometriosis and having to attend so many appointments, Priscilla continues to experience patient burnout and sometimes struggles with her sense of identity due to her long-term debilitating pain. In addition to the physical, emotional, and psychological struggles associated with endometriosis, Priscilla has had a difficult time navigating the workforce.

“My condition often disrupts my ability to work consistently, leading to employment challenges and even workplace discrimination. Despite being a dedicated and hardworking individual with a degree and a lot of experience, potential employers often overlook my capabilities due to my chronic illness.”

This further impacts Priscilla’s financial security, especially considering treatment and pain management for endometriosis can be very costly.

Overall, Priscilla has learned so much about herself, endometriosis, healthcare providers, and the healthcare system since her diagnosis. For individuals out there dealing with an endometriosis diagnosis or other concerning symptoms, Priscilla’s advice is:

“To become your advocate and educator. Trust your feelings and experiences because they are valid. Staying informed and up to date on the latest research and treatment options is essential for managing your health. Don’t hesitate to ask questions and seek out information.”

Finally, Priscilla urges healthcare providers to do better by first listening to their patients and acknowledging their pain.

“I often face issues at doctor’s appointments because of their old knowledge of what Endometriosis is, so I think it’s important to make sure people understand the definition of endometriosis has changed and could change in the future. I don’t want it to be misleading because Endometriosis has been found in men as well, and that it is “endometrial-like tissue” that can attach anywhere even outside of the pelvic cavity.”

Priscilla maintains that “endometriosis is a chronic whole body inflammatory disease that is stimulated by inflammatory responses elevated within the disease itself and outward. I don’t want it to be misleading because Endometriosis has been found in men as well, and that it is “endometrial-like tissue” that can attach anywhere even outside of the pelvic cavity. Endometriosis shouldn’t be defined as simply as a women’s reproductive disease.”

Priscilla’s journey has been one riddled with pain, mistreatment, and dismissal. Yet, she continues to fight to advocate for herself and others.

Online forums serve as a source a support for patients facing care and engagement deficits.

Due to the lack of coordinated care and under-resourced reproductive care in Indiana, Hoosiers affected by endometriosis often turned to online forums and support groups to get answers to their questions and find solutions to their medical problems. These forums are riddled with experiences surrounding the management of symptoms, care, or passing the buck at the hands of healthcare providers practicing without a complete understanding of their patient and their disease.

This sharing of stories has empowered people to continue to seek out answers, to reassure them that their experiences are both valid and real, and to provide them with information to help them better advocate for themselves. The forums also give partners the background and support to best support and address a complicated medical diagnosis.

Below you will find some relevant resources, including resources Priscilla has found helpful while navigating her endometriosis diagnosis.

1. Endometriosis Foundation of America (https://www.endofound.org) for a variety of information, including patient stories and stories from the caregiver perspective.

2. “The Doctor Will See You Now: Recognizing and Treating Endometriosis” by Tamer Seckin; a resource for patients, caregivers, and people in the medical community.

3. The subreddit and Instagram page @freshlypeeledorgans

(https://www.instagram.com @freshlypeeledorgans @thoracic_phoenix for patient perspectives and experiences with endometriosis.

You can find Priscilla on Instagram @priscilla.de.castro and her bird page @theavianeye.

*A note from Jordan Finch: As I read some of these forums, I wondered if the stories shared in these community groups could be shared with a broader audience to increase awareness and encourage change from the very people women with endometriosis turn to for care.

As my internship at Women4Change comes to an end and I continue my last year of medical school and my journey as a hopeful future Obstetrician-Gynecologist, I’m grateful for the opportunity to do the very thing that fulfills me most, my “why”: come through on the ability to listen to people tell their stories.

Women4Change advocates at the Statehouse and in Indiana communities for policy that improves the health, economic, and personal safety of women in Indiana. We amplify the truths and voices of Hoosier women. If you have a story that must be heard by Indiana, please share it with us.

Reach out to: Aimee West- aimee@women4changeindiana.org

Thank you to Priscilla and Benny for sharing yours.

*As March, National Endometriosis Awareness came to a close, April, National Sexual Assault Awareness Month has begun.

What do you want Hoosiers to know about what it’s like for survivors of sexual assault, navigating Indiana’s systems? Where is Indiana getting it right? Where are we going wrong?