Why So Many Women With PCOS Feel Dismissed and What Needs to Change

For millions of women, living with unexplained symptoms becomes a normal part of life long before they ever hear the words polycystic ovarian syndrome. Weight gain that does not respond to diet or exercise. Painful, irregular, or absent periods. Acne, hair loss, excess facial hair. Mood swings, fatigue, pelvic pain. And yet, appointment after appointment ends with the same message: everything is fine.

PCOS affects far more women than most people realize. Still, many go years, sometimes decades, without answers. The issue is not only the condition itself, but the system surrounding it. Delayed diagnoses, limited education, and a lack of compassionate, whole person care leave women feeling unheard and dismissed.

This is where advocacy, education and community become life changing.

A Childhood Marked by Symptoms and Silence

For Megan Stewart, the signs began early. As a child, she experienced rapid weight gain, intense mood swings, hair growth in unwanted places, hair loss on her scalp, acne and debilitating pelvic pain. Her mother knew something was not right and took her from provider to provider, searching for answers.

Instead, they were told it was normal, that she just needed to lose weight, or worse, that the pain was in her head.

Like many young girls, Megan internalized those messages. Doctors dismissed her symptoms. One even suggested she was faking pain to get out of school. It was not until she was sixteen that she finally received a formal PCOS diagnosis, alongside an even more shocking diagnosis of cervical cancer.

Rather than support or guidance, she was told to come back when she wanted to have kids.

That moment reflects a painful truth many women with PCOS know too well. Their health is often only taken seriously when it is framed around fertility.

Diagnosis Brings Relief and New Questions

For many women, receiving a diagnosis brings mixed emotions. There is fear, grief and frustration, but also relief. Relief that the symptoms are real. Relief that it is not all in their head.

But diagnosis is only the beginning.

PCOS is a syndrome, not a single disease. There is no one size fits all treatment and no FDA approved medication that addresses it as a whole. Instead, women are often prescribed birth control, metformin, or other medications that target individual symptoms without addressing the bigger picture.

This leaves many asking, what now?

The Power of Self Advocacy

One of the strongest messages in the PCOS community is this: you have to advocate for yourself.

Medicine is exactly what the name implies. Practice. No provider has all the answers, especially when it comes to a complex condition like PCOS. Yet many women feel intimidated by credentials and titles, assuming they should not question what they are told.

But questioning is often what leads to answers.

Self advocacy can look like asking for second or third opinions, requesting deeper testing, seeking providers who listen and building a care team instead of relying on a single doctor.

PCOS care often requires collaboration across multiple specialties, including OB GYNs, endocrinologists, dermatologists, dietitians and mental health professionals. When holistic care is not accessible through insurance, women are left navigating an already exhausting system on their own.

How Community Fills the Gaps Healthcare Leaves Behind

Out of her own frustration and isolation, Megan created something she could not find herself. A space dedicated entirely to PCOS education, advocacy and support.

What began as handmade teal bracelets shared with family to spark conversations quickly grew into a global movement. Messages poured in from women around the world saying they had PCOS and had never seen anything like this before.

That spark became the PCOS Awareness Association, a nonprofit built on four core pillars: support, education, resources and research.

The organization funds scientific research, hosts global events like PCOS Con, and provides community spaces where people with PCOS, along with their partners, families, and allies, can learn and connect.

Importantly, the work does not stop with patients. Programs for partners and supporters acknowledge that PCOS does not affect just one person. It impacts relationships, families and entire support systems.

Healing Is Built Through Small, Consistent Shifts

There is no universal roadmap for healing with PCOS, but many women find progress through sustainable changes over time.

For Megan, some of the most impactful shifts included working with a women’s health acupuncturist, increasing daily movement and learning to stop punishing herself for setbacks.

Healing is not about doing everything perfectly. It is about listening to your body, making changes that fit your life and continuing forward even after hard days.

You Are Not Alone in This

PCOS can feel isolating, confusing and overwhelming, but it does not have to be faced alone. Awareness, education and community change outcomes. They shorten diagnosis gaps, validate lived experiences, and remind women that their symptoms deserve care and answers.

If you have ever felt dismissed or unheard in your health journey, this conversation is a reminder that your voice matters and support exists.