Closing out Endometriosis Awareness Month

Doubling-down on what we CAN control inside the broken healthcare system. Plus: a recap from the kick-off to our new webinar series featuring ✌️convos with endo specialists 🎉

Mar 27, 2025

Happy Endometriosis Awareness month to my fellow endo warriors! MyAdvo hosted two webinars in honor of spreading awareness and education. See below for a few highlights. MyAdvo members get free replay access.

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Lately I've been thinking a lot about solving for right now instead of who-knows-when.

In last month’s newsletter, I took you on a dystopian journey to what women’s healthcare will look like in 2030 if our current trajectory continues. And that’s real. The potential for meaningful progress in women's health research and treatment is being stifled by our current administration.

From cuts to scientific funding to disappearing grants and the quiet removal of mandates that once prioritized diverse research all point to a troubling trend: the 1993 NIH inclusion mandate, which established guidelines for inclusion of women and minorities in clinical research, feels like it’s being undone brick by brick. The NIH even archived its policy requiring female animals in studies just this month.

However troubling (and it is — very), it doesn’t change the fact we still need help TODAY. MyAdvo exists particularly to help those of us navigating new and evolving health journeys with PCOS, fibroids, endo, and other chronic gynecological conditions. None of these conditions have cures right now. Diagnosis and treatment options have only marginally improved since our mothers and grandmothers faced the same struggles (in many cases without knowing what they were dealing with).

But if you’re someone who’s just come off the pill and you’re experiencing new PCOS symptoms; or you've found out you're pregnant and have fibroids; or you’ve finally connected with a provider who acknowledges your painful periods and suspects endometriosis — you need answers now.

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It's clear how much policy change is needed to move the needle and counter the persistent gender bias in healthcare. Take relative value units, or RVUs, for example — which is a system that quantifies the value of a medical procedure or service and dictates how much doctors will be reimbursed. I recently learned that there’s a huge gap in the reimbursement values between surgeries for male and female anatomy.

While it may not come as a shock, it means healthcare institutions scale back on certain services, leading to the closure of labor and delivery units as well as long wait times for gynecological surgeries for endometriosis and fibroids among others. And in fact, gynecologic surgeons are the lowest paid of all surgeons. Read more on what’s essentially reverse-incentivization in this post from Dr. Jocelyn Fitzgerald, who is a double board-certified urogynecologist and OB/GYN looking into gynecologic economics.

Source: Jocelyn Fitzgerald, MD Instagram

In a similar vein, companies working on erectile dysfunction get SIX TIMES more funding than those doing research into endometriosis, which affects 10% of women and people AFAB worldwide — aka hundreds of millions of people.

Endometriosis impacts 10% of women worldwide yet erectile dysfunction gets 6X the funding.

We’re clearly in an uphill battle. The deep systemic issues make it hard for me to believe meaningful breakthroughs will ever reach patients in my lifetime. But don’t get me wrong — I’m not saying we should give up on a future where women’s health is prioritized. The science to tackle these issues exists. (Sneak a peek at some of it in the recap of MyAdvo’s webinar on the future of endometriosis diagnosis with Dr. Susan Khalil, gynecologic surgeon and endo specialist, below.)

But until we can accelerate research and translate those discoveries into real clinical advancements, and while current headwinds persist, I feel the urgency to focus on what’s possible today. How can we hack our way through this broken system together to advocate for better care, better answers, and better outcomes?

Where do you feel like you need help today? What needs feel most pressing for you?

It may mean we need to roll up our sleeves, practice our fact-finding and follow-up question-asking, and get ready to play the long game, but perhaps we can join hands and all jump in together? MyAdvo and I are here for it. I’d love to hear how you’re navigating all of this — and where, in particular, you feel you need help today. Reply to me by email at esther@hellomyadvo.com or DM me in Substack.

In this issue

MyAdvo community news
Women’s health in politics
Question for readers
MyAdvo monthly reads

MyAdvo community news 👥 💭

I’m so proud to share that we officially kicked off our expert-led webinar series this month! 🎉 Thank you to all who participated and submitted questions to our two super-knowledgeable endometriosis specialists.

Stay tuned for more! Bookmark our events page to stay up to date on what’s upcoming. And please — let me know if there’s anything specific you’re hoping to learn or discuss as we continue planning programming for the year.

MyAdvo members get free replay access!

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🔄 Webinar Recap: The future of diagnosing endometriosis 🥼🏥

We kicked off the series with an enlightening conversation with Dr. Susan Khalil of Mount Sinai, gynecologic surgeon and endo specialist, about new research that could ultimately lead to non-invasive tests for endometriosis.

“We know endometriosis is far more than just a reproductive condition. By understanding how inflammation drives the disease, we can explore new treatment approaches beyond hormonal suppression or surgery…that could spare patients years of suffering and uncertainty.”

—Dr. Susan Khalil

A few highlights from our conversation:

Dr. Khalil’s team has identified specific inflammatory proteins that appear to be uniquely associated with endometriosis — detected through an inflammation panel developed in partnership with Mount Sinai’s Human Immunomonitoring Center (HIMC).
By identifying patterns of inflammation in blood samples, her goal is to develop a predictive, non-invasive blood test that can indicate the presence of endometriosis without requiring surgery.
The ultimate goal is to validate this test so it can become a clinically available diagnostic tool to improve early diagnosis, reduce delays in care, and potentially enable targeted treatment options that address inflammation directly.
She stressed that the research is still in its early stages, and additional funding is crucial in order to expand the study's sample size and improve accuracy and reliability across diverse patient groups.

▶️ Support Dr. Khalil’s groundbreaking research by making a donation — every bit helps.

🔄 Webinar Recap: The True Timeline of Endo Surgery Recovery ❤️‍🩹

What a refreshing conversation this was! Dr. Lora Liu, an NYC endometriosis excision specialist, shared tips for your endo surgery recovery — and also why you’re definitely not alone if recovery takes longer than the “2 weeks” we’re often told to expect.

A few highlights:

The standard 6-week recovery guideline is based on fascia healing, not full-body recovery.
Your true healing period depends on disease severity, surgical technique, anesthesia time, and overall patient health.
Expect your first 2–4 menstrual cycles to be more painful due to inflammation and tissue healing.
Multidisciplinary post-op care is important and Dr Liu strongly recommends pelvic floor physical therapy for nearly all patients.

MyAdvo members get free replay access!

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💬What we’re talking about 🗣️

From our members WhatsApp chat this month:

Go-to wellness rituals such as a short walk, gentle movement like yoga, pelvic floor therapy, and magnesium supplements.
Tips for dealing with interstitial cystitis, which is common for those with endo.
Personal experiences with supplements and medications like serrapeptase, Nattaokinase, valproic acid, plaquenil, and Orilissa (lupron).
Pain relief effectiveness
- Over-the-counter (OTC) products like tens machine, pain creams especially ones with CBD in them, ice packs, motrin/tylenol/, aleve (naproxen)
- In-office procedures like botox and nerve blocks

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Women’s health in politics

While there’s only so much we can do right now, I firmly believe it’s important we stay aware of what’s going on — within the federal government as well as at the state level since that’s where many of the challenges begin, particularly with regard to abortion issues.

ICYMI: The New York Times reported that federal agencies have flagged hundreds of words to limit or avoid according to a compilation of government documents. You’ll notice that advocacy, advocate, and advocates made the list. (We’re not backing down! 💪📣)

👏 Three cheers for Massachusetts, which announced that OTC birth control and prenatal vitamins will be free for people on the MassHealth plan.

😲 Missouri House lawmakers approved a bill that would allow pregnant women to get a divorce (yes, you read that right). It still faces a few hurdles before being signed into law by the governor, but let’s hope it makes it through.

⚖️ Department of Justice dismissed a lawsuit challenging Idaho’s strict abortion ban, claiming it conflicts with the federal Emergency Medical Treatment and Labor Act (EMTALA), which continues to put providers and patients in limbo when it comes to emergency situations. An Idaho hospital is suing back to keep the abortion ban on pause.

✅ A Montana district court agreed with abortion providers and permanently blocked restrictions on abortion care for Medicaid patients, saying it violated residents’ constitutional rights.

‼️ In Virginia, the state Department of Health will now be required to educate the public on common menstrual disorders including endometriosis and PCOS according to a bill passed unanimously by the state legislature.

Newly introduced federal bills aimed at restricting abortion access:

S.987 & H.R. 2075: Both would prohibit the federal government from supporting, funding, or conducting research involving human fetal tissue obtained from an abortion.

💲Separately, the Trump administration plans to freeze $120 million in federal family-planning grants that go to support clinics like Planned Parenthood that provide much-needed care for low-income families — reportedly so the Department of Health and Human Services (HHS) can review whether any of the money is used to support DEI initiatives. (But we all know what it’s really about, right?) Trump also just yesterday cut billions from state health services that track infectious diseases, mental health services, addiction treatment and other urgent issues.

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Question for readers

Where do you feel like you need the most help today? Particularly within your healthcare journey — whether you’re navigating a chronic condition or not?

Education, advocacy tips, or what else? The more we talk about it, the less alone we will feel — and the greater chances we have to support each other.

💭Add your voice to the discussion on Substack💭