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I STARTED MYADVO TO

PAY IT FORWARD

The idea for MyAdvo took root after my first gynecological surgery and a year of COVID lockdowns. Today, I’m going to tell you about 4 life events: that first surgery, my grandmother falling terminally ill, egg freezing, and breaking my spine. All taught me the same lesson when it comes to our healthcare system: women must learn how to advocate for themselves when they go to the doctor.
 

I vividly remember my first gynecologist visit.


They casually mentioned I had a vaginal septum (and because you're dying to know… a vaginal septum is a tissue that divides the vagina in two). Explains why I leaked through my tampon less than 30 min after putting one in. It's technically a congenital anomaly, meaning I was born with it. None of that was actually explained to me in that first appointment. Instead, the doctor shooed me out of the room because I was her last appointment of the day. Cue my deep dive down the Google rabbit hole. I really wanted to talk to someone who could acknowledge that I was not an alien for being born with a tissue dividing me. Luckily, I had a coworker who experienced polyps and recommended her gynecologist (you’d think the original doctor would have at least given me a referral. Apart from her, it felt pretty taboo to talk about anything wrong “down there.” My mom had never experienced something like this, while my sister was still too young to relate. I couldn’t share with girlfriends. Young graduates, we were busy spending our newly earned money on the hot new bar and racking up dating stories, NOT our vagina monologues.

With hardly anyone to talk to and no medical professional to guide me through next steps, I not only felt isolated but totally out of control when I kept receiving more diagnoses: a uterine and cervical septum, adenomyosis, and fibroids. A few months before the pandemic hit, I finally went through surgery to remove the vaginal and uterine septum as well as a fibroid. Post-surgery, I decided I’d figure out how to save enough to freeze my eggs by the time I turned 30. I found myself in the same conundrum as when I first got diagnosed with that vaginal septum; I didn’t know where to start nor anyone who had gone through egg freezing. And again, it wasn’t exactly coworker small talk or a fun girlfriend catch-up to ask about egg freezing in your-mid twenties. With a pandemic lockdown backdrop, the idea for MyAdvo really sunk in – could I make it easier to connect women with similar health journeys and goals?

Since then, life’s come extremely fast.


It accelerated – 2 caregiving experiences for grandparents in hospice and palliative care, 2 egg freezing surgeries, and 1 spinal fracture. During each of these, a combination of the same things kept happening: doctor dismissal, sometimes even contempt, confusion at where to start to get answers, and a fear that no one wanted to hear about illness, injury, or death. When my grandmother got a UTI that undid the heart surgery she went through the year before, they gave her max 2 months to live. My family was devastated. I took on figuring out how to transfer her hospital care at home, where she wanted to spend her last days. I had no idea what I was doing, and it’s not like there’s a “how-to" playbook for millennial kids handling end of life. After she passed, I went ahead with egg freezing because she was all for it. I assumed I’d feel more in control navigating healthcare since this was my choice, but I faced the same black box I’d just dealt with. How could this be just as overwhelming as working through my grandmother’s hospice care? By the time I got into the accident abroad that fractured my spine and was dealing with an ER doctor, towering over my body and scoffing that I couldn’t actually be in that much pain, I’d understood no one was going to help me but myself.

It’s infuriating how healthcare has NO incentive to change,

and how much it’s on women to push through. Doctors will downplay women’s symptoms or just straight up deny their pain. And even if women get correctly diagnosed, they’re left on their own to follow through on doctor’s recommendations. Detrimental, when women have been taught that admitting anything wrong with their reproductive health is taboo.


These stats are only a few examples of how much the healthcare system works against women. Why are women so overlooked in healthcare? First, the female body is under-researched and under-funded. It wasn’t until 1993 that the National Institutes of Health (NIH) mandated including women in clinical trials to receive funding. But it wasn’t until 2016, that sex as a biological variable was factored into research. To translate: before 2016, researchers were not required to include the female sex in clinical research. 

Doctors can’t properly diagnose or treat women if the research for diseases that disproportionately affect us just isn’t there.

Second, the US healthcare system rewards doctors for how many patients they see (aka fee-for-service), which makes it no surprise that on average doctors only spend between 13-24 minutes with patients (a quarter of them spend less than 12 min) with OB/GYNs on the lower end of that range. It’s no wonder there’s a doctor and healthcare staff shortage due to burnout, especially post-COVID.

I will say that in the 10 years since I first dealt with gynecological issues, it’s become somewhat easier to talk about women’s health. I credit the #MeToo movement and women having kids later (median age is now 30 years old!). We started chipping away at the stigma surrounding reproductive health (even though our health is not just about having babies). Then Roe v. Wade was repealed, rolling back nearly 50 years of women’s reproductive rights, only making it harder for women to assert control over their healthcare decisions. I now regularly see headlines on how the US, despite being the top spender on healthcare, has the highest infant and maternal mortality rate among high income countries. This disproportionately affects Black mothers, who are 3x more likely to die than White mothers. One step forward, two steps back. It’s like they’re punishing us for speaking up against a system that was never designed with women in mind.

They fail to realize what women have excelled at for centuries: word-of-mouth.


It’s been my most dependable lifeline. It allowed me to get in touch with professional advocates who encouraged me to insist on the care my grandmother wanted in her final days. They taught me to anticipate the unspoken from the hospital and insurances more interested in pushing their services than providing clarity. It connected me with a dozen women who shared their egg freezing experiences, giving me the confidence to ask my reproductive endocrinologist questions as I attempted to family plan on my own 5 years before I’d consider having a baby (shoutout to my texting buddies while injecting)! It made me shameless about securing a second opinion for my spinal fracture and eventually transferring my care when doctors dismissed my pain yet pressured me into next day surgery.

But word-of-mouth only works when you know enough people who can help you. With Roe v. Wade being repealed, there’s a resurgence of fear and stigma around women’s health, forcing many of us to live our health issues in silos. Our surveys revealed that 73% of female respondents wanted to know more people who shared similar health journeys. They wanted to feel less isolated, discuss symptom management, compare remedies, share doctor recommendations, and more. The recurring themes were "trust" and "ease of access" for information beyond healthcare providers. And yet, current solutions don’t enable women to drive healthcare change. Googled health info is sterile, Facebook groups can either feel like screaming into the ether or drowning under millions of opinions, and even telehealth apps struggle to bridge virtual and in-person care.

Our mission at MyAdvo is to teach women how to advocate for themselves.


We want to transform how women interact with the existing healthcare system, starting by scaling word-of-mouth. No woman needs to live her health issue in a silo when so many of us are dealing with the same challenges and can help get answers. We’ve created the MyAdvo Peer Advocate Network – a community of women across major cities who are bravely sharing their health stories to help another woman at the beginning of their health journey. MyAdvo’s goal is to pool our collective experiences, and alongside our medical advisors, create digital, self-advocacy tools so women can build holistic, supportive teams to fill the gaps in their healthcare, irrespective of where they live or work. It’s about learning how to advocate for ourselves, and word-of-mouth is our gateway tool. Join us and get access to a network of women changing women's healthcare by sharing their health stories.

When more of us proudly share our health journeys, including the doctors, hospitals, treatments, alternative therapies that made a difference, we’ll not only accelerate another woman’s path to relief but also redefine what good care looks like. Will you take part in the movement? You can join MyAdvo’s Peer Advocate Network here. The change we want to see will have to come from the ground up. Help us pay it forward by sharing your health story here or forwarding this link to a woman who you think has a story to share.

Appreciate you,

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NAVIGATING THEIR HEALTH JOURNEY

CHAMPIONING EVERY WOMAN

We're on a mission to destigmatize women's health by empowering women to share their stories.
We believe every woman can own their health and get the care they want and need, on their terms.

MyAdvo is here to show women how

If you share our vision, join the movement & become a Peer Advocate

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