Nine years to be heard.
Nine years of appointments, questions, pain, doubt, advocating, researching, hoping.
Nine years that have taught me resilience in ways I never imagined I would need to learn it.

Endometriosis has shaped me — not just physically, but emotionally and mentally. It has forced me to become stronger, more informed, and more persistent than I ever planned to be. It has taught me patience. It has taught me endurance. It has taught me how to keep going even when I feel dismissed or exhausted.

But today, I am learning something even deeper.

We deserve to be heard the first time.

We deserve to have our pain taken seriously without having to prove it over and over again. We deserve providers who listen without minimizing. We deserve answers without years of questioning ourselves. We deserve care that acknowledges that just because something isn’t visible, doesn’t mean it isn’t real.

Resilience is powerful. I’m proud of the strength this journey has built in me. But resilience should not be a requirement for receiving basic validation and appropriate care.

I was young when I first heard the word endometriosis. I was probably around six years old.

I remember visiting my mom in the hospital during one of her frequent flare-ups. She would be lying in a bed, hemorrhaging, pale and exhausted. I didn’t fully understand what was happening — I just knew it was tied to her period. Watching her like that made me terrified to one day get mine.

I grew up thinking that blood clots, monthly hospital stays, and a completely drained body were just a normal part of “that time of the month.” That’s what I saw. That was my reference point.

My mom rarely complained. She tried to advocate for herself, but she was often either hospitalized or stuck on the couch, too depleted to move. As a child, I didn’t understand the weight of that. I just knew that sometimes my mom wasn’t available in the ways I needed her to be.

And I really didn’t want to have a period one day.

Even though my mom had a diagnosis and, in her eyes, an amazing OBGYN, she seemed to accept that this was just her fate. This was normal. I remember the first time I heard my parents say the word “endometriosis.” It sounded made up. Dramatic. Like a big, complicated word to explain something simple.

My mom wasn’t dramatic. She wasn’t lazy. She wasn’t exaggerating. She was suffering.

And she was silenced — like so many of us have been.

What I witnessed as “normal” was actually a woman enduring a chronic illness in a system that too often minimizes women’s pain. She did the best she could with what she knew. She survived it the only way she was shown how.

We deserve to be heard the first time.

Not dismissed.
Not minimized.
Not told it’s just part of being a woman.

Because it’s not.

At 17, I went to my first OBGYN appointment alone.

I shared my family history. I talked about my heavy periods and debilitating cramps. I said the word endometriosis out loud, carrying everything I had seen growing up.

My doctor — another woman — looked at me and said, “Don’t worry. That’s normal. We can treat the cramps with birth control.”

So at 17, I was placed on oral birth control.

At first, it felt like a miracle. Lighter periods. Shorter cycles. Less disruption. I thought, Why not? Maybe this was the solution. Maybe this is just what being a woman required.

By my third Pap smear, I had a new doctor. I brought up endometriosis again.

This time I was met with, “I don’t think you have endo. It’s not genetic, and it’s very rare.”

Very rare.

So, another refill of birth control it was.

At 24, everything shifted.

My mom was diagnosed with stage 3 breast cancer — hormone-triggered — just a few years after her hysterectomy. Suddenly, hormones didn’t feel harmless anymore. Birth control didn’t feel so simple.

It sparked a new fear in me.

I asked questions again. I brought up endometriosis again. I expressed concern about staying on hormonal birth control long term.

And I was told, “Don’t worry about endo until you’re trying to get pregnant.”

So I agreed.

Because if it’s not a concern to my doctor, it shouldn’t be a concern to me… right?

That’s what we’re taught. Trust the experts. Don’t overthink. Don’t be dramatic. Don’t question too much.

But deep down, something never sat right.

Then things changed.

My periods became more painful. Ovulation became debilitating. I was experiencing everything — crushing fatigue, chronic pelvic pain, painful ovulation, breakthrough pain, deep uterine pain, pain with intercourse, painful bowel movements, and rectal bleeding every single period.

Even one cycle where I could not walk, and during ovulation, I had to crawl around my house because of the ovarian pain.

Even on birth control.

I was riddled with anxiety because I could no longer trust my own body. I didn’t know when pain would hit or how severe it would be. I missed work. I canceled plans. I isolated myself. I started living around my cycle.

And still — I wasn’t trying to get pregnant.

So doctors didn’t seem concerned.

It didn’t matter that I was bleeding rectally. It didn’t matter that ovulation left me doubled over. It didn’t matter that intimacy was painful. If I wasn’t actively trying to conceive, it felt like none of it qualified as urgent.

My mom felt guilty watching it unfold. But she didn’t know what else to offer me. Her “normal” had been yearly ablation surgeries just to get temporary relief. That was the model she was given. That was the care she accepted.

So at 26, I did something I never imagined I would do.

I made an appointment with a reproductive endocrinologist — and I lied.

I said I was trying to conceive.

Because apparently that was the only way my pain would matter.

I went through a full fertility workup. Bloodwork. Imaging. Testing. And finally, a doctor looked at my ultrasound and said the words I had been waiting years to hear:

“I think you have endometriosis.”

It was seen. It was documented. It was real.

My surgery was booked.

I know now that excision surgery is considered the gold standard for treating endometriosis. But at the time? Ablation sounded hopeful. It sounded proactive. It sounded like relief.

And when you’ve been dismissed for nearly a decade, any validation feels like a victory.

 It was surreal waking up from surgery.

What was supposed to be a 45-minute procedure turned into three hours. Three hours of ablating Stage 3 endometriosis scattered throughout my pelvis — in the pouch of Douglas, on my ovaries, along my bowel, and across multiple pelvic structures.

When I opened my eyes, groggy and sore, I felt something unexpected:

Validation.

It wasn’t in my head.
It wasn’t dramatic.
It wasn’t “just cramps.”

It was extensive.

Eventually, I sought a second opinion and learned I was actually Stage 4. That validation cut both ways — devastating, yet affirming. I had been right about my body all along.

Fast forward through IVF, through pregnancies, through becoming a mother. After building my family, it became clear: it was time for excision surgery.

I was still in pain — even on birth control. I was passing massive blood clots, some nearly five inches in size. My uterus was triple the normal size. Adenomyosis was strongly suspected.

So at 34, I made the decision.

I said goodbye to my uterus — and honestly, good riddance.
Goodbye to my fallopian tubes.
Goodbye to my cervix.
Goodbye to my right ovary.

During surgery, I was confirmed to have Stage 4 deep infiltrating endometriosis (DIE). Endometriosis was excised from my right hip, diaphragm, pelvic wall, bowel, bladder. Both ovaries were adhered to my uterus. My bowel wall was so thin it was scraped during surgery. My bladder struggled to “wake up” afterward.

I now live with interstitial cystitis — another condition commonly comorbid with endometriosis.

My quality of life is drastically better because adenomyosis is cured with hysterectomy. But what many people do not understand is this:

Endometriosis is never cured.

It is a whole-body inflammatory disease. Removing organs does not erase it. It requires lifelong awareness and management.

As a mental health therapist, this journey has changed me. Every week, I hear stories from women being dismissed. Misdiagnosed. Told their pain is normal. Given birth control as a bandage without investigation. Sent home to “wait until you want to get pregnant.”

Women’s health needs more funding. More research. More education.

Endometriosis affects approximately 1 in 10 individuals born female. It is considered one of the top 20 most painful medical conditions. It is a leading cause of infertility. And yet — it still takes an average of 7 to 10 years to diagnose.

That is not acceptable.

Now I have a daughter.

And I carry both fear and fire because of that.

I was silenced for nine years. I questioned myself. I minimized myself. I deferred to professionals who were undereducated about a disease that affects millions.

I will not do that anymore.

I am dedicating my heart — personally and professionally — to helping others find their voice, their validation, and their resources sooner than I did.

Because we deserve to be heard the first time.

 -S.C