On this episode, we welcome Courtney, a current PhD student at the Fletcher School of Tufts whose research focuses on the intersections of conflict, reproductive health, and humanitarian programming, to talk about her ongoing reproductive health journey. Her long medical path, which began with life-threatening blood clots (DVT and pulmonary embolism) at age 17, leading to a diagnosis of Factor 2 and Factor 5 clotting disorders and resulting in significant medical trauma. She was later diagnosed with endometriosis at 23, after struggling with symptoms for three or four years. Courtney discusses the difficulties of being gaslit and dismissed by medical providers regarding both her blood clots and her reproductive pain. She describes how she was eventually guided toward proper endometriosis care by a friend and colleague who had also experienced endometriosis and adenomyosis, providing essential support and guidance through an isolating experience.
Courtney's severe pain and the eventual diagnosis of adenomyosis, the "evil cousin of endo," led her to the decision to pursue a medically indicated hysterectomy at 24. She explains that her clotting disorders meant that pregnancy would be dangerous due to the risk of increased clotting from estrogen flushes. She appreciated finding an endometriosis specialist, who respected her autonomy and supported her desire to reclaim her quality of life by rescinding the “ability to give life in a way.” While Courtney and her husband, Mark, aren’t quite ready to start growing their family yet, they plan to pursue international adoption.
Courtney has since channeled her experiences into advocacy, testifying at the Massachusetts State House in support of comprehensive bills aimed at improving endometriosis care. She has become involved in the Endometriosis Alliance of Massachusetts (TEAM), an organization bringing together providers, patients, and caregivers to improve the lives of those with endometriosis through education and advocacy, of which AllPaths is a founding member. This November, Courtney is also running the Cambridge Half Marathon as a fundraiser for TEAM and AllPaths Family Building to support endometriosis advocacy efforts in Massachusetts, showcase the resilience of the endo community, and demonstrate that life can improve with proper treatment. Ultimately, Courtney stresses that there is no "ideal" or "normative" family building process, realizing through her own journey to this point that "what works for you is what the ideal is."
LINKS
Support Courtney’s Half Marathon Fundraiser at https://www.gofundme.com/f/donate-to-team-and-allpaths-family-building.
Learn more about the Mount Auburn Center for Endometriosis Care at https://mountauburnhospital.org/services/gynecology/endometriosis-treatment.
Get involved with endometriosis advocacy in Massachusetts at https://www.endoteam.org/ and https://allpathsfb.org/ma-advocacy/.
TOPICS COVERED IN THIS EPISODE:
Endometriosis, medical gaslighting, patient education, medical trauma, adenomyosis, pelvic floor physical therapy, trust, TEAM, Endometriosis Alliance of Massachusetts, Mount Auburn Hospital, hysterectomy, uterus, uterus party, MIGS, minimally invasive gynecological surgery, fertility, family building, patient autonomy, MA legislature, MA state house, advocacy, advocacy work, MA advocacy, endo bills, endometriosis bills, reproductive health, medical advocacy, women's health, infertility support, adenomyosis, patient empowerment, healthcare navigation, emotional support, community support, endometriosis awareness, advocacy efforts, PhD student experiences, personal health journeys, intersectionality in healthcare, fertility options
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