Endometriosis is a disease characterized by endometrium-like tissue (tissue similar to that of the lining of the uterus) growing in other areas of the body, often but not exclusively in the pelvic cavity (e.g., on the ovaries, around the uterus, on the bowels or bladder).¹ Pain is the most common symptom of endometriosis, including back pain, pelvic pain, or other pain that worsens during menstruation.² Endometriosis may also affect fertility. Although research has dispelled some theories regarding the origins of endometriosis, its true cause(s) is/are still unknown, and this poorly understood disease affects approximately 11% of women in the United States;³ rarely, men may also be afflicted. The U.S. Congress first formally recognized the need for public awareness and improved health care regarding endometriosis in a 2002 concurrent resolution (H. Con. Res. 291).⁴ Then, in fiscal year 2018 (FY18), endometriosis was named as a topic area in the Peer Reviewed Medical Research Program (PRMRP).

Heather Guidone, who has lived with endometriosis for over 30 years and served on the Board of Directors of the Endometriosis Research Center since 1997, looked forward to seeing how the inclusion of endometriosis in the PRMRP would improve research for this poorly understood disease. Heather was diagnosed with stage 4, or severe, endometriosis in her late teens. Her treatments have included multiple surgeries including a hysterectomy, which ignited in her a passion for improving awareness and research for endometriosis and other gynepathologies. Heather noted that some endometriosis research could seem redundant and, ultimately, offered limited benefit to patients who received substandard care compared to some other diseases. When endometriosis was named as a PRMRP topic area, both the Endometriosis Research Center and one of its collaborating organizations, EndoWhat?, encouraged her to apply to serve as a consumer peer reviewer. Heather participated in the FY20 PRMRP peer review and appreciated seeing the innovative and pioneering ideas described by investigators, who, like her, are dedicated to understanding and improving care for endometriosis. The experience, she says, “brings so much hope and encouragement for the future of this disease.”

As a BCPA, Heather has participated with many organizations and served on multiple review panels. Compared to other organizations, she reported a stronger feeling of camaraderie and mutual respect among the scientists, clinicians, and consumer reviewers at the PRMRP peer review. Borrowing from the disability rights movement, Heather greatly appreciated the true embodiment of “Nothing About Us Without Us” she experienced in the process. Patients and their advocates, she attests, have vast personal and professional contributions to offer when decisions about health care are made. Further, she acknowledges that the public, including current and future patients, often do not hear about scientific research advances, however revolutionary, until they are incorporated in new treatments, devices, or standards of care. This can lead to a sense of stagnation in research efforts, even for someone as involved as Heather. Participating in the PRMRP peer review and reading some very “cutting-edge submissions” assuaged her fears and validated some of her 30+ years advocating for endometriosis research. Her experience, she says, “reinforced the reality that there are, in fact, many dedicated scientists in our community working so hard to serve our global community and obtain a better understanding of disease biology, its impact on affected individuals, the relations of endometriosis to cancers and comorbidities, state-of-the-art approaches to diagnosis, more timely interventions, and so much more.”

References:

¹https://www.nichd.nih.gov/health/topics/endometri/conditioninfo.

²https://www.endocenter.org/do-you-have-endo/.

³Buck Louis GM, Hediger ML, Peterson CM, et al. 2011. Incidence of endometriosis by study population and diagnostic method: the ENDO study. Fertility and Sterility 96(2):360-365. DOI: 10.1016/j.fertnstert.2011.05.087.

⁴H.Con.Res.291 - Expressing the sense of the Congress with respect to the disease endometriosis. https://www.congress.gov/bill/107th-congress/house-concurrent-resolution/291/text.