What happens if research for PCOS, fibroids, and endo stalls completely?
⚠️ Everything’s at risk from abortion care to the HPV vaccine and treatment breakthroughs for cancer, endometriosis, heart disease, and more.
Imagine it’s 2030.
You’ve spent years managing your PCOS, endometriosis, and fibroids — bouncing between doctors, fighting for answers, advocating for yourself. Now, you’re ready to start a family. But in this America, reproductive healthcare has changed.
Since reproductive health programs were defunded, access to specialists has dwindled. The few remaining OB/GYNs are overwhelmed and have months-long waitlists. Fertility specialists? Wait times are even longer — if you can even find one. Many left the profession when policies targeting reproductive care made their jobs legally risky.
You know your conditions could lead to a high-risk pregnancy. Your fibroids put you at risk for miscarriage, but hospitals now follow strict legal protocols before intervening. You’ve heard stories of women being sent home until they’re hemorrhaging because doctors fear treating a miscarriage could be considered an illegal abortion.
Your primary hurdle: getting basic care. Routine ultrasounds to monitor fibroids or ovarian cysts used to be standard, but now they’re harder to access. Many clinics shut down after losing Title X funding, even those providing essential reproductive care. Insurance coverage has shifted too. Many insurers quietly scaled back coverage for reproductive health services. Hysteroscopies, laparoscopy, IVF — treatments you might need — are now largely out-of-pocket expenses. Your savings account is drained before you even start trying. Even when you finally conceive, complications arise. Medications once used for miscarriage and postpartum care are now restricted, and pharmacists hesitate to fill prescriptions. You’re spiraling…
You start searching for answers online but getting access to medical information is different now. The government websites that once provided guidance on reproductive health no longer mention abortion in any capacity — not for miscarriages, not for ectopic pregnancies, not even for life-threatening complications. Resources for fertility and pregnancy care are outdated since research funding dried up. Social media is now everyone’s main source of information.
The underfunded and understaffed Department of Health and Human Services has left many state health systems crumbling. Fewer public health clinics, fewer trained doctors, and a lack of accessible information means more women are suffering in silence. You watch as wealthier women fly overseas for care while everyone else is left to navigate an increasingly broken system.
Imagine it’s 2030. Now, decide what you’re going to do in 2025.
That might have felt like a lot. Too dystopian? Too much to take in? Or maybe it’s overwhelming because it’s real. Honestly, I feel both every day. Since January 20th, policies have chipped away at rights we thought were a given. And yet, the mass outrage is tepid at best. Are we okay with this? Or are we just too exhausted to fight it?
Will you share feedback on this newsletter?
Before I get into it, I want to share that I’m working hard to make this newsletter a go-to resource to help you keep a pulse on women’s health issues and learn how to be better advocates for yourself and others during these challenging times especially.
I want it to help you keep tabs on what’s happening without feeling like you need to track every headline, debate, or proposed policy update. Because even if it doesn’t feel like it now, at some point the time will come when you need to know what’s going on so you can act — whether it’s to support a friend, loved one, or yourself.
Do you have feedback? I welcome input on the types of information you find particularly helpful or not helpful and what you’d like to see more of. Hit reply and let me know or leave a comment on the Substack post. In the meantime, be on the lookout for new sections, more streamlined content, and ways to get involved. Please forward this email or share this newsletter with anyone you think might be interested.
Ok. Let’s get into it.
Since Trump’s first days back in office, decades of vital health research, guidelines, and educational content have been deleted from government websites. The National Institutes of Health (NIH) announced sweeping budget cuts, triggering backlash from scientists and research institutions. It’s also currently experiencing a funding freeze due to a ban on posting notices in the Federal Register (aka new grant applications). The National Science Foundation (NSF) has begun changing its grant review to flag any with the words “diversity,” “inclusion,” “women,” and “race.” This is also happening across the CDC. Medicare lawsuits have been filed. Injunctions are underway. All while the administration is simultaneously signing executive orders to expand IVF access — just enough to create a distraction from the deeper attacks on reproductive care.
The NIH, as the largest funder of biomedical research, plays a massive role in shaping the future of medicine. Cuts to its budget don’t just mean fewer research grants — they signal stalled or even backward progress on everything from life-saving treatments to women’s health studies. Meanwhile, Republicans are openly considering cuts to Social Security, Medicaid, and Medicare to fund their tax plans. The message is clear: If you want access to healthcare, you’re going to have to fight for it.
Only 8.8% of NIH grants went to women’s health research in the last decade.
And still, the loudest response seems to be silence. A mix of apathy, exhaustion, and paralysis. Maybe it’s because the full effects haven’t hit yet, making it easier to look away. But that’s exactly how we lose ground — little by little, until we wake up one day to find the options we took for granted are just gone.
Women make 80% of the healthcare decisions for their families.
Women in the US make 80% of healthcare decisions for their families. By 2030, women will control much of the $30T in Baby Boomer assets. We have power, but we’re being systematically removed from the conversation about our own healthcare.
In the reader discussion question this month, I’m wondering what you think — why isn’t there more outrage? Are we apathetic? Paralyzed? Have we surrendered to what’s happening?
Perhaps too many of us don’t know how to join what’s brewing underground. Are there any women-led groups organizing in your area that we can amplify?
I hope you’ll read to the bottom and add your thoughts to help get the discussion going on Substack.
In this issue
MyAdvo community news
Founder health update
Advocacy snapshot
Women’s health in politics
Question for readers
MyAdvo monthly reads
MyAdvo community news 👥 💭
📣3/13 Webinar: The future of diagnosing endometriosis 📅
I’m super excited to announce the start of our expert-led webinar series in time for Endometriosis Awareness Month. On March 13th, join us for a conversation with Dr. Susan Khalil of Mount Sinai about groundbreaking research that could lead to a non-invasive test for endometriosis.
Details:
March 13, 2025 at 6pm ET on Zoom
📣3/24 Webinar: Endometriosis Surgery Recovery 📅
On March 24th, Dr. Lora Liu, NYC-based endometriosis excision specialist, will be talking to us about why endometriosis surgery recovery is not the “2 weeks” you’re often told as well as best practices for recovery.
Details:
March 24, 2025 at 5pm ET on Zoom
❤️ Black History Month series
In the spirit of generating awareness, fostering discussion, and demanding change, I want to call attention to some of the significant health disparities Black women face in our healthcare system. These stats were featured in our February Black History Month Series on Instagram, where you can find more detail.
70% of Black women experience medical gaslighting during pregnancy
80% of Black women will develop fibroids by age 50
Black women are 3x more likely to develop fibroids than white women
💬What we’re talking about 🗣️
A few highlights from our members WhatsApp chat this month:
Endo pain relief via botox
High prolactin amongst PCOS members
Functional provider vs endocrinologist to treat PCOS
Bio identical progesterone for endo/PMDD
Join the conversation by becoming a MyAdvo member.
Founder health update
ICYMI: Last month, I detailed my decision-making process around whether or not to make embryos from eggs I froze a few years ago. Spoiler: it’s a no for now. This month I’m sharing an update on my ongoing journey to monitor and stabilize my PCOS symptoms. Find more about my PCOS journey to date in the December newsletter.
I’m happy to report that my cycle has been steady for the past FOUR months despite traveling to California for the holidays plus a few work trips, which feels like a big win. Even my Natural Cycles app calls it regular at an average of 31 days +/- four. I wrote this in week two of February when I sadly thought I was ovulating because my test strips showed a rise in LH. But when I saw that my temperature was going up and down, I tested again and realized I’d actually peaked ovulation on day 29, which is very late and means my period will be late and my cycle will likely be >40 days.
I feel so disappointed, to be honest, because I was doing well and it seems obvious to me that traveling is the main culprit. It’s defeating to realize an activity I enjoy and have to do for work and to see family can really mess me up. My mood and anxiety symptoms have come back with a spiraling vengeance during the first couple weeks leading up to my period to the point where I’m wondering if I also have PMDD. My mood is something I struggle to track. I will say that I think stopping coffee for the two weeks before my period — so, after I ovulate — has been super helpful.
One thing I'm trying to understand more is how nutrition is impacting my moods — everything from caffeine and alcohol to eating out at restaurants and more. I'd love to hear how people have been able to understand how their cycle and perhaps gut is linked with mood and anxiety. Reply to me directly at esther@hellomyadvo.com with any insight you have!
Advocacy snapshot: negotiating medical bills 💰
THE ISSUE
An unexpectedly high (by thousands of dollars 😳) Labcorp bill
THE SITUATION
My partner didn’t have insurance when we did our genetic testing in December because he’d just moved from London and it was too soon to get him added to mine. (Read more about why we got tested.)
THE DISCREPANCY
My entire test through Cigna was only $140. Our fertility clinic, Weill Cornell, assured us there was a partnership that would prevent his test from being more than $400 out of pocket. Then we got his $3,000 Labcorp bill.
OUR SELF-ADVOCACY PROCESS
I called Labcorp and learned that they do have a payment program as well as a good faith estimate calculator that can help you understand your lab costs ahead of time. The estimate makes it easier to dispute bills that are more than $400 higher than expected.
The bigger win came when they told me about an initiative called Every Mom Pledge. If I filled out their “Moms Helping Moms of Tomorrow” questionnaire, they could reduce the lab test to $400 (not a scam, I promise!). AND they offer an additional discount for anyone who is paying out of pocket. In the end, our entire bill was reduced to $460!
THE OUTCOME
We got our Labcorp bill reduced from $3,000 to $460! It’s evidence that amazing things can happen when you take control and start advocating for yourself. It’s not always easy. I did spend an hour on the phone, but you never know unless you try.
This is your reminder to ALWAYS call and follow up — whether it’s with the provider, the lab, or your insurance company — to negotiate your medical bills.
Women’s health in politics
This month, I’m focusing on the influx of recent GOP bills aimed at restricting abortion access at the federal level. There are numerous others also being introduced at the state level across the country. And if you’re not aware of the Comstock Act, or you need a refresher, the ACLU shares how anti-abortion groups aim to leverage it to (illegally) ban abortion nationwide.
Whether you feel directly affected or not, it absolutely impacts all of us no matter our income bracket, home state, or healthcare needs. We can’t take anything for granted — from abortion care to the HPV vaccine and treatment breakthroughs for cancer, endometriosis, heart disease, and more. While it can feel overwhelming to stay informed, it’s vital that we push through our paralysis to fight for better healthcare access for women, people AFAB, and all people.
The 5 Calls app makes it easy to contact your congresspeople and make your voice heard.
Federal bills aimed at restricting abortion access
HR722: The “Life at Conception Act” proposes federal ban on abortion.
HR629: The “Ending Chemical Abortions Act of 2025” proposes federal ban on medication abortion.
HR 73: The “Abortion Is Not Health Care Act of 2025” proposes altering the US tax code to exclude abortion care as a health service.
HR 49: The “No Pro-Abortion Task Force Act” proposes prohibiting Federal funds for the HHS Reproductive Healthcare Access Task Force.
S. 125: The “End Taxpayer Funding for Abortion Providers Act” proposes prohibiting taxpayer dollars for any entities that perform or provide referrals or funding for abortions.
HR 343: The “Title X Abortion Provider Prohibition Act” proposes amending the Public Health Service Act to prohibit family planning grants from going to any entity that performs abortions.
HR 799: Proposes mandatory parental notification and intervention if an unemancipated minor seeks an abortion.
…and yes, more.
Executive orders (EO) affecting women’s healthcare
EO signed to enforce the Hyde Amendment that prohibits federal funds from being used for abortion.
EO signed to limit the definition of sex to male or female in order to target transgender, nonbinary, and intersex people.
EO signed to eliminate diversity, equity, and inclusion programs within the federal government and any companies receiving federal funds.
Trump also pardoned anti-abortion protesters convicted of violating the Freedom of Access to Clinic Entrances (FACE) Act.
A domestic gag rule has been placed on Title X, which means nearly 900 women's health clinics nationwide will lose federal funding, impacting access to breast cancer screenings, HIV tests, and birth control. Women of color make up more than half and Latinas over a third of patients protected by Title X.
EO signed to expand access to IVF by lowering out of pocket costs and removing barriers to care.
Experts and advocates see this as more PR than policy, as it contradicts current GOP efforts to define life at conception and lacks legislative backing, such as mandated IVF insurance coverage.
Find more information here and here.
Question for readers
What do you think: — why isn’t there more outrage around what’s happening? Are we apathetic? Paralyzed? Have we just surrendered to our fate?
Related: Do you know of women-led mobilizations or groups we can amplify?
🔖 MyAdvo monthly reads
From policy to podcasts, research updates, trends, and other news to support your self-advocacy journey.
🛡️ New York passes shield law to protect out-of-state abortion pill providers
🏥 New study finds Insurance type, Medicare or commercial, influences fibroid treatment recommended
⚖️ FDA announces end of Ozempic & Wegovy shortage, barring sale of compounded versions of drugs by pharmacies
🤰🏿 A third of low-risk women are undergoing C-sections for their first birth in Mississippi
🔬 Black, Hispanic, and Asian women less likely to get same-day mammogram diagnostic services after abnormal results found
❗ US women's risk of dying by homicide increases 20% during pregnancy and postpartum
⚧️ Trans youth and hospitals rattled by efforts to ban gender care
🙅♀️ P&G “menopause test” is a fraud, lawsuit claims