How do you make a 5-year plan with fibroids or endo?
♟Playing chess with my fibroids, career, wedding & baby planning
My partner and I recently got engaged (yay! 🥂), and as we plan out when we want to have a wedding, our baby and career plans keep coming up. When I decided to freeze my eggs, I figured I’d want kids in the latter half of my 30s. Who knows, maybe I’d push 40 for my first if I hadn’t found a partner yet. There was so much I needed to accomplish career-wise, and raising children would just be so expensive timing wise and financially. I’d need at least another decade to feel stable before being able to take care of another life, let alone more than one! I comforted myself, thinking that if I partnered up earlier, I’d of course want to have children earlier. But now living the latter, I’m ironically realizing that I’d felt so much surer of my baby plans when I thought I’d be going at it alone and could push off the reality of actually having kids.
The reality is that we have to factor in my partner’s cross-country move, quitting my 9-5, a wedding, and timing at least one fibroid surgery before trying to conceive…ideally, in the next 3 years. It’s really the fibroid one that comes with so many questions: how bad will my symptoms get in the next year? Should I just get the surgery over with while I still have corporate insurance? What if they just grow back before we’re ready to start conceiving? I really don’t want to go through surgery twice in a couple years given that I’ve now had surgery almost every year since 2019. Will I need a laparoscopic surgery this time around? If so, does that mean I have to give birth via C-section? What if it takes us a while to conceive, and we actually need to use those frozen eggs for IVF? The biggest question looming is, how much time and money will I need to get through these medical events and recovery? Amongst MyAdvo Peer Advocates, we often talk about playing a game of chess between our career and family plans and impending medical events due to our chronic female conditions.
McKinsey published a very timely report, shedding light on the staggering cost of the women’s health gap. They quantified that the health gap amounted to approximately 1 week lost per woman per year. Should the gap be addressed, the global economy could be boosted by ~$1 trillion annually by 2040. One of the many reasons for women’s health disparity is timely diagnosis. We know that the diagnosis of endometriosis, for example, can take up to 10 years. For many, this journey can start as soon as we get our first periods. Our Peer Advocates who’ve dealt with endometriosis remember spending entire days at the nurse’s office, missing school because of their debilitating periods. Some were even admitted into special education schools because doctors believed their pain was due to mental health issues. Fast forward to entering the workplace–now, it's not our education that's interrupted, but our work. MyAdvo Peer Advocate, Paola Galeano, had to take 6 months off work to undergo and recover from her endometriosis excision surgery. (Thankfully, her job had flexible PTO, short-term, and long-term disability benefits, but that’s often not the case).
The McKinsey report highlights the massive ripple effect this has on the economy, estimating that expanding participation of women in the workforce would contribute more than 20% towards Global GDP. Increasing women’s productivity? Another 20%. But as we know from personal experience and as stated in the report:
“Chronic diseases are often linked to extended absences from work, and poor health is a cause of “presenteeism,” where individuals go to work but cannot perform at their full capacity, reducing productivity. Finally, disabilities and informal caregiving obligations hold back affected individuals, often women, from full workforce participation.”
Reading this in the report made me think of my last podcast conversation with kozekoze founder, Garrett Wood who experienced her doctors delaying seeing her for over a year and a half despite trouble conceiving a second time. She had to advocate for tests to be run across multiple providers and take days off to drive 3 hours to Boston to visit fertility clinics.
Our healthcare system leaves patients to connect the dots. With a lack of research, there’s just a lot more distance between those dots for women. One of McKinsey’s key recommendations is to “bridge the gaps in diagnosis with more consistent and standardized screening and data collection.” We agree this can help lead to earlier diagnosis and that “a more holistic, patient-centric treatment approach could help improve disease and symptom management, prevent uncontrolled progression and resulting complications, and reduce unnecessary treatments.”
But it’s hard for women to get diagnosed. 1 in 5 women report their doctors ignore or dismiss their symptoms. And for every woman diagnosed with a women's health condition, 4 go undiagnosed. When this happens, many of us don’t have anyone we know who also has fibroids, endometriosis, adenomyosis, PCOS or symptoms that we feel they’d relate to. That’s why MyAdvo is so committed to connecting women who experience similar health issues, so women get to faster diagnosis and believe they have agency in their choice of treatment. What’s been amazing to see in our budding community of MyAdvo Peer Advocates is this momentum of wanting to pay it forward!
A woman feeling validated about symptoms is empowered to advocate for themselves at the doctor’s, getting one step closer to a diagnosis. In fact, how women’s health is discussed is something I truly appreciated about the McKinsey report. For one, they reframed how we should be thinking about condition or disease-specific severity. Historically, the majority of global life sciences R&D has been allotted to conditions you die from faster. However, it’s equally as important to invest research in conditions that affect quality of life. Have you ever heard of the paradox that women live longer than men but in poorer health? The report puts stats to this:
“Among these conditions are rheumatoid arthritis, endometriosis, uterine fibroids, and diabetes. The disability weight for someone with moderate abdominal pain and primary infertility due to endometriosis is 0.121; for moderate rheumatoid arthritis, it is 0.3017. This translates to a person being willing to trade a year of their life to avoid 8.3 years of living with endometriosis or to trade a year of life to avoid 3.2 years with rheumatoid arthritis.”
Secondly, women’s health has been relegated to only reproductive health issues when it goes beyond sex-specific conditions (ie, fibroids, endometriosis) and applies to health conditions that may affect women differently (ie, heart disease) or disproportionately (ie, autoimmune diseases). Treating just 10 conditions like menopause, PMS, migraines or gynecological conditions could contribute to more than half of the global economic impact!
We’re building MyAdvo to help women find the path of least resistance on their health journey, so they feel validated and confident to advocate for themselves. I can’t tell you enough how helpful it was to connect with women my age, living in my city, who had gone through egg freezing before I went through the process, so I felt empowered to ask my doctors questions, request my charts and imaging, and plan ahead with them. Today, our very own Peer Advocates have been critical in helping me think through fibroid surgery again this year. When I think about planning out the next few years with my partner, MyAdvo’s helping me not only connect the dots but find more dots, so I can get to where I want to be faster and with more confidence. After all, that’s the crux of what advocating for yourself is about—being knowledgeable about what you want and your health options, so you can share and make informed decisions with your doctors, family, and partner.
MyAdvo Monthly Reads
(policy, podcasts, research, trends & more to advocate for yourself)
🔬 Non-invasive uterine fibroid treatment, Sonata Transcervical RF Ablation Procedure, officially assigned new CPT code effective January 1, 2024.
🔬 Endometriosis saliva test granted conditional access by French government to eligible women.
⚖️ New York could be first state to offer paid maternity leave during pregnancy.
🥚🧊19 year-old Isabella Strahan, Michael Strahan’s daughter, shares her egg freezing journey before undergoing radiation and chemo.
🧑⚖️ Jury declines to indict Brittany Watts, Ohio woman charged for managing miscarriage at-home.
⚖️ Texas court rules that “hospitals cannot be required to perform emergency abortions” to save a patient’s life, keeping things status quo in the state.