LipedemaStories: A TikTok Video Explained What No Doctor Could

Stine’s story as a Norwegian nurse, coach and athlete living with lipedema, navigating years of unexplained pain, and finding clarity in a TikTok moment that changed everything.

Stine (@stinebjorlyk) is a coach, personal trainer, functional fitness instructor and nurse. She has worked in healthcare for nine years and has run a small gym with her partner for twelve. On Instagram she inspires thousands with heavy strength training, running, functional fitness and a contagious work ethic.

What few could see from the outside was that she was living with a chronic, painful condition she had never heard about during her training as a nurse: lipedema.

This is Stine’s story – told the way she experiences it, while knowing that others with lipedema may have a very different reality.

A positive force – even when it hurts

Both as a trainer and nurse, Stine describes herself as hardworking and positive. She cares deeply about making people feel seen and understood – whether they stand in front of her at the gym or she meets them as patients.

She genuinely believes that positive energy and focusing on possibilities take people far. That doesn’t mean everything is easy, but that she intentionally shifts her attention to what can be done, even when the body pushes back.

Training has been a huge part of her life. She has trained a lot and trained hard, and her upper body has responded well. But her lower body has always been different: bigger, heavier, more “stuck” than the rest. She has worn different clothing sizes on the top and bottom for as long as she can remember.

When the body doesn’t follow the “rules”

Already as a teenager, Stine noticed that something didn’t add up. She trained consistently, ate well, and did everything “right”—but her body didn’t respond in the way she had learned it should.

At around 18, she saw a doctor because her training effort, diet, weight and appearance didn’t make sense together. Blood tests ruled out thyroid disease. The conclusion was something many with lipedema hear: “You’re just like that.”

Later in life, the gaps became even more obvious. During her second pregnancy, she experienced a dramatic increase in leg pain. Regular socks became unbearable—the pressure from the elastic edge hurt so much that she could only tolerate ankle socks. That was the first time she really felt something was wrong.

Running was another red flag. She trained both cardio and strength at a high level, but her legs would fill with lactic acid almost immediately. Every running step could feel like being whipped across the shins.

A TikTok video that changed everything

Stine has been a nurse for nearly a decade. Yet she didn’t first hear the word lipedema at work or in her education—it was on TikTok.

A random video suddenly connected the dots. Body shape, pain, training experience, sock pressure, the feeling that something didn’t add up—it all matched.

As a nurse, she almost felt ashamed for not knowing about lipedema earlier. For her, it highlighted how little is actually taught about women’s health—and how many conditions don’t receive the space they deserve.

At the same time, she is grateful that the media has begun to focus more on lipedema and women’s health this past year. It gives her hope that fewer women will go years without answers.

The diagnosis: relief, grief and gratitude

When Stine finally received the diagnosis, it was an enormous relief. Suddenly, so many pieces fell into place.

There was finally an explanation for why her body was asymmetrical, why her lower body didn’t respond to training, why running hurt so badly, and why something as small as a sock edge could become unbearable.

But it was also heavy to realize that lipedema is chronic—something she will live with for the rest of her life.

Still, she describes a deep gratitude. She knows many women have more severe symptoms, and she considers herself “quite lucky” compared with many in the lipedema community.

Surgery, research and a new everyday life

Stine lived with significant pain, especially in her lower legs. Before surgery, she needed pain medication several days a week.

She was accepted into the national research study on lipedema surgery. Because her leg pain was so intense and limiting, surgery felt like the right option.

She describes the surgical process as a very positive experience. After the first operation she felt as if her everyday life had been completely transformed. Her legs are now free from pain, and she is preparing for her second operation. She feels motivated and ready to finish the surgical journey.

Stine also has lipedema in her arms, but since they are not painful, she currently has no plans for arm surgery.

She stresses, however, that lipedema surgery is not a “quick fix.” It is painful, physically demanding and requires realistic expectations. And in Norway today, the treatment is still not publicly funded.

Training with lipedema: “just pain, not dangerous”

Stine has continued training at a high level—heavy strength, running, functional fitness—despite living with lipedema.

She has experienced intense pain, especially during running. At times, every step felt like being struck across the shins. But strangely, this pain became easier to handle once she had a diagnosis.

Knowing that the pain was not due to an acute injury or dangerous condition helped her categorize it as “just pain”—not dangerous, just uncomfortable.

She is very aware that this is her way of coping, and that others may not relate similarly. She hopes she doesn’t step on anyone’s toes by saying this. Only after surgery has she truly understood how painful it had been—now that she finally feels what “normal” legs actually feel like.

After surgery: lighter legs and more joy in movement

Recovery went surprisingly well. Stine took her first light jog three weeks after surgery.

And today—only months later—running feels completely different. Her legs are lighter, her shins don’t burn the way they used to, and her performance is improving in a way she never saw before. Three months post-op, she was already running faster than she ever had.

Her relationship with her body hasn’t changed dramatically; she has always loved to use her body. But training has become much more enjoyable. It’s easier to look forward to sessions when the body cooperates, and progress shows in performance rather than body shape.

For Stine, training still holds the same value as before: health, mastery and mental wellbeing—not appearance.

“Focus on what you can do”

Throughout this journey, Stine has held onto one guiding principle:
Focus on what you can do—not on what you can’t.

This doesn’t mean ignoring pain or pretending the diagnosis isn’t serious. But it means choosing to direct energy toward what is possible—training methods that work, days when the body allows more, and adjustments that make life easier.

She hopes other women with lipedema won’t get stuck in everything that’s difficult. It is possible to create a better everyday life, even if too little is covered by the healthcare system today. She carries hope that this will change.

Advice for women who want to be active but struggle with pain and heaviness

Stine knows that many women with lipedema experience pain, heaviness and fatigue during activity. In her own experience, both training and nutrition influence pain levels directly.

Periods with less activity make her symptoms worse. The same happens when her diet becomes less structured.

She doesn’t believe there is one “right” form of exercise for everyone, but she is clear on this:
Anything is better than nothing.

Strength training, running, crossfit, swimming, cycling—whatever you enjoy. The key is movement you want to return to, even on heavy days.

Community, DMs and respect for different stories

The lipedema community—both online and in real life—has been invaluable to Stine.

She has received support from women who shared their experiences with compression, conservative treatment and surgery. She is deeply grateful for those who answered her messages and offered honest advice.

Still, she emphasizes: her story is hers alone. Others may experience lipedema entirely differently, and that is okay.

Hope for the future – for herself and for women’s health

As both a nurse and a woman with lipedema, Stine has clear opinions about what needs to change.

She believes lipedema surgery should absolutely be publicly funded. When women become long-term sick-listed or even disabled because of a condition that surgery can meaningfully improve, it becomes a question of both health and economics.

She hopes the national research study she participates in will provide the evidence needed to make surgery a public treatment option. She also hopes the study highlights the value of conservative treatment, so compression and lymphatic devices can be funded as well.

Above all, she hopes skilled, resourceful women won’t be pushed out of the workforce unnecessarily.

What can we learn from Stine’s story?

1. Knowledge changes how we understand pain.
   For Stine, pain became easier to manage when she understood where it came from. A diagnosis gave her safety and perspective—painful, but not dangerous.

2. Training and lipedema can coexist—but look different for everyone.
   Stine shows that high-level training is possible with lipedema, but also that it requires adaptation, patience and respect for individual differences.

3. Openness and research create change.
   By sharing her story, Stine brings visibility to a condition still overlooked in healthcare. Her openness—and the research she contributes to—helps shape a future where women with lipedema are understood, not dismissed.