"Becoming the CEO of my own health"

Endometriosis affects an estimated 190 million people worldwide, yet it’s often misunderstood and misdiagnosed. 

For Endometriosis Awareness Month, we sat down with Kimberley Winslow to discuss her journey to getting a diagnosis, her two surgeries, and the importance of self-advocacy within the healthcare system. 

Kimberley’s Story

Kimberley is an Australia-based women’s health advocate. After years of being dismissed by doctors, she was finally diagnosed with severe stage 4 deep infiltrating endometriosis in 2020. Following her initial surgery the same year, much of the disease was left behind, and her doctor told her it was “inoperable”. 

That could have been the end of the road. Instead, it was the beginning of Kimberley’s mission to advocate for herself and become, as she says, “the CEO of my own health.”

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus. This causes inflammation and scar tissue formation. For a deep dive into the condition, you can read our Ask the Experts endometriosis Q&A.

The journey to getting a diagnosis

For Kimberley, her “extreme pain” started after she stopped taking hormonal birth control. Over the following years, she visited many doctors in search of an answer, but was repeatedly dismissed. So much so that she nearly walked away from the healthcare system completely. 

“I'd sort of given up on seeing doctors because I had been dismissed so many times,” she recalls.

Her symptoms worsened: extreme fatigue and brain fog were joined by a bloated, sensitive stomach, painful intercourse, and extreme period pain with heavy bleeding.

The breaking point came when her body gave out, and she collapsed in her driveway.

“I just ran out of energy,” she says. “I suppose it was like my battery had just died.”

She then found a doctor who listened to her. They ordered blood tests and an ultrasound, and this was when endometriosis was first mentioned as a possibility. 

Kimberley’s scan came back and revealed endometriomas (also known as ‘chocolate cysts’) on both ovaries. These cysts can sometimes be seen on scans, unlike most endometriosis tissue, which doesn’t always show up.

It left her feeling strangely “lucky” to finally have the proof she was looking for. With this new information, it became clear that surgery would be the next step.

The first surgery

In 2020, Kimberley had laparoscopic surgery, which confirmed stage 4 endometriosis. At first, she felt relieved. “I finally had an answer,” she says. But this relief was short-lived. At her follow-up appointment, the doctor told her that they’d left much of the disease behind.

“I was told in that appointment that the disease was too risky to remove and that it was inoperable.”

Despite doing everything “right,” she was left to manage her diagnosis alone. There were no referrals, no follow-up care, and no clear next steps.

“The appointment was over, and then I was just left with this diagnosis and no way forward.”

This put Kimberley in what she describes as a “really bad mental space”. The surgery hadn’t helped with her pain, and it actually worsened.

 “I felt like no one could help me because I already went through the process. I did the surgery. I did everything right...I felt like I was in a worse position than before.”

Exploring natural medicine

In the years that followed, Kimberley turned to naturopathic medicine and explored lifestyle changes.

Reflecting on that time now, she still values the lifestyle changes she made—like being mindful of her diet and exercise—but she has become far more cautious about the supplements she was sold by her naturopath.

She was told they would help with her endometriosis, but after researching the science, she found that many of the supplements had no clinical evidence to support them. 

“There is a conflict of interest in the natural medicine space,” she warns, noting the commissions earned by the people prescribing these supplements. And how this can prey on those who are “desperate and looking for a solution.”

The "CEO Mindset" and self-advocacy

After all of this, Kimberley's perspective shifted:

“I view myself as the CEO of my own health,” she explains. 

This means asking the hard questions, diving into the research, and getting a second opinion if things don’t feel right. She views herself as a company, hand-picking the healthcare providers for “her team.”   

This “CEO mindset” comes down to a few core points:

• Your healthcare team are guides, not decision makers

• You have the right to question, research, and explore your options

• Not all solutions work for everyone; your body is unique

• If something doesn’t feel right, you can end the relationship

• Stay open to new information, but trust your own experiences

• It’s okay not to know everything; learning is part of the process.

How to find the right team

Kimberley encourages people to ask surgeons about their experience with complex cases. If you aren't sure if a provider is the right fit for your "team," ask yourself:

• Do they listen without rushing?

• Do they validate your concerns and your pain?

• Do they offer education and clear options?

• Do they explain things in a way that makes sense to you?

If the answer is no, you have the right to walk away and find someone else.

Building your “undeniable health record.”

Another key piece of advice: track your symptoms and build a health record. She suggests keeping a file that includes:

• Past diagnosis and lab results

• A full list of any medications and supplements you’re taking

• A record of your symptoms (pain levels, heavy bleeding, energy, etc.).

For recording your symptoms, 

“Clue is the perfect tool for this,” she says. “It’s how I personally track my symptoms. If you bring this to a practitioner, you say, 'I've been experiencing all of these things for this amount of time.' It's all there. It can't be ignored.”

The second surgery: Robotic-Assisted excision surgery

Five years after her first surgery, Kimberley decided to try again, this time using her CEO mindset. Her bowel symptoms had become “excruciating” and were increasingly impacting her daily life.

She dove back into the research and discovered something called the "Da Vinci" robot. This is a high-tech tool that helps surgeons remove endometriosis tissue with enhanced precision and visibility, making it a powerful tool for complex cases like Kimberley’s.

Finding a specialist in her area who used this technology was a game-changer, but his attitude mattered even more. 

 “I felt like he really listened to me,” she says. “Something I’m always so grateful for is that he didn't give up."

What was supposed to be a two-hour surgery turned into six hours. Her surgeon discovered the disease had spread to her bowel, kidneys, and diaphragm. However, because he had the robot and the expertise to work around these delicate organs, he could remove what the other doctor had said was “too risky” to touch.

Advocating for quality

Kimberley’s journey has made her a firm believer that when it comes to endometriosis, the expertise of the surgical team is crucial. And while management will look different for each person, she maintains that excision surgery was the best option for her, and finding a highly skilled surgeon who could identify and remove the disease was the best thing she did

By raising awareness and having these conversations, Kimberley hopes to make this "invisible" condition a recognized reality. Hoping to help others know which symptoms to look for and try to prevent the years of dismissal that she faced.

Life for Kimberley now

The recovery from her second surgery was "really hard," as Kimberley puts it. But today, her life looks much different.

Her exercise tolerance has improved, and she’s back in the gym, weight training four days a week. She’s honest about the fact that surgery isn’t a cure, though, and she still feels "quite unwell" for about two days a month. 

Her gratitude to her surgeon is clear. "My bowel pain is completely gone," she says. "I can't even tell you how much just that alone has changed my life."

A message to others

For anyone else facing dismissal or struggling to find answers, Kimberley has a simple message:

“You know your body better than anybody else. If you know that something is not quite right, you need to trust that.”

If you want to see more from Kimberley, you can check out her YouTube channel, where she shares more of her journey.