We Got Lucky. That Is the Problem: Endometriosis, Diagnosis Delays, and Advocacy

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Two years in almost any healthcare story. Two years without an answer sounds unacceptable. Here, it counts as lucky. That is the problem. Welcome to Still Here, Still Trying on Mira. This episode is about why severe period pain can remain unexplained for years and how patients, families, clinicians, and advocates can build a better path together. It is not about blaming doctors, but good providers can care deeply and still need better training, clear information, and stronger connections across the healthcare system.

But it’s also about the remarkable friendships that can grow when people stop carrying these experiences alone. Because one essay and one podcast apparently were not enough for Mike this week. He is introducing a free tool to help young people describe what they are experiencing and ask for appropriate care. Luck should not be a healthcare strategy. Here’s Mike Baker. And yes, Mira is correct. Look, apparently an essay and a bunch of other stuff is probably not enough.

And I tell you, that seems a little judgmental from someone who lives inside a computer and has never had to maintain a reasonable sleep schedule. But look, fair enough. Whatever. Mira’s awesome. She was on her game today, too. Like, you hear all that music in there. I think she was feeling it. And I hope you’re going to feel it in this episode too. Look, this week I publ published a an uh article on just an ordinary Tuesday. Um, you should go check that out.

Just sign up for the newsletter. There’s some good stuff in there. Uh, lots of random musings from Mike Baker’s brain. But this um particular essay was called uh The Decade That Women Lose Before Anyone Believes Them. And I’m just gonna you know keep rolling on that theme because this is so important. This is about endometriosis. It’s about the years women and girls can lose while pain is normalized, explained away, or just treated as something that they simply have to endure.

Look, our family received an answer in two years, and and we got lucky. Uh just listen to how insane that sentence is. Like two years of pain and uncertainty was the lucky outcome. That’s that’s sad. The the more common wait is somewhere between four and twelve years. Holy cow, you just listen to that number. So, yes, I am grateful it was not longer, and I’m also not going to pretend that two years is acceptable because somebody else had to wait ten.

Gratitude and anger can live in the same house, and they do. Um, they’ve been roommates at our place for a while. So tonight I want to stay with that word lucky. Because when we call someone lucky, we usually mean something good happened, or they won something, or they escaped something, or the timing broke their way. But when we call a two-year diagnostic process lucky, what we are really saying is that the system usually asks people to suffer longer, and this happens with other diseases too.

Um, and that should just make us uncomfortable. So I want to be really clear how though, this episode is not finding not about finding uh one person to blame. It’s about it, it’s not about turning doctors into villains, and it’s not a story about one family having everything figured out. It’s about what the weight teaches us. It’s about the remarkable friends that we have made through this work, and it’s about how good clinicians, patients, and families can work together without treating the exam room like opposing sides of a courtroom.

And before we finish, I’m going to give you something practical. So hang on till the end. Look, this is not going to diagnose anyone. It’s not going to fix the healthcare system, but it just might help a young person begin a conversation that would otherwise remain trapped inside her body. So stay with me, we will get there. It’s going to be a great episode. Um, look, think about how much ordinary life fits inside two years. A person can begin high school and become a junior, a friendship can begin and end.

A family can move, a body can change. Two years holds a lot of life. Now, imagine pain just moving through it. Pain that makes it difficult to plan, to sleep, to attend school, or trust what your body will do tomorrow. And then just imagine not knowing why. Maybe you assume everybody experiences this, right? Sometimes that’s what kids are told. Maybe someone told you that periods are supposed to hurt. Way too many people are told that. Maybe the pain is so common in your family that nobody recognizes it as you unusual.

Or maybe you tried to describe it once, but the words did not come out correctly. Maybe the first explanation sounded reasonable, so everybody hoped that it was right. And then the pain returned. And this is how time disappears. Not always because one terrible person slams a door. Sometimes it disappears through completely ordinary moments. An appointment ends without an answer. We had plenty of those. A treatment helps a little, but not enough. A referral takes months.

Oh man, we experienced that. School becomes busy, insurance changes, the family already has too much going on, and the pain eases long enough for everyone to hope that the problem is over. Oh man, those were brutal. And then another month arrives, and then another year. Nobody made a deliberate decision to lose that time, but the time disappeared anyway. And that is what makes this so hard. We want every bad outcome to have a bad person standing beside it.

We want the problem to be somebody who did not care. And sometimes that person exists. Like I have to be honest about that. I’ve heard some horrible stories. Like real dismissal happens. People have been told that pain is normal, exaggerated, or entirely in their heads. Like that happens. That causes harm and it shouldn’t happen. But look, a long diagnostic delay can also emerge from good people moving through an unreliable pathway. The symptoms may overlap with other conditions.

The patient may not know which details belong together. And honestly, the clinician may see one part of the story while another provider sees a different part. Nobody has the full picture. And the patient keeps waiting for somebody to assemble it. Oh man, I waited so long for that. And we waited for that as a family for somebody to just put all the pieces together. And for us, like that, that’s honestly that is where luck entered. The right information reaches the right person at the right moment, and a pattern becomes visible.

A question changes, a referral finally leads somewhere, and an answer comes. And then everybody looks backwards and tells the story as if the ending was inevitable, but it was not. Because that is hindsight doing what hindsight always does. The truth is that too many things had to line up. A reliable pathway cannot depend on a patient having the right insurance, the right vocabulary, the right clinician, and enough energy to keep returning. If the answer depends on fortune, we don’t have a pathway.

We have a maze. And some people get out sooner, but that does not make the maze good. Okay, well, we talk about diagnostic delay as though it’s just a number. Four years, eight years, twelve years, but nobody experiences a statistic. They experience Tuesday morning. I know I’m going to talk about Tuesday mornings a lot because I just I think it’s amazing. But look, they experience trying to get ready for school while their body is telling them to stay in bed.

They experience making plans with friends and adding an invisible question mark. They experience wondering whether the pain is real enough to mention again. They experience watching the people around them become less alarmed because the pain has been present for so long. And that is one of the cruelest parts. The longer a symptom lasts, the more normal it can begin to appear from the outside. You know, your the girl can hear, well, she’s always had difficult periods, or she gets through it, or she is strong, and strength is a beautiful thing.

I mean, sure, but come on, guys. It is also sometimes the story we tell when we have become too comfortable watching somebody suffer. A young person should not need to collapse publicly before pain becomes credible. She should not have to create a dramatic enough moment to earn attention, and the impact on ordinary life is already information. Missing school matters, losing sleep matters, giving up activity matters. These are not complaints about attitude or resilience.

They are pieces of the health story. And one of the most important changes we can make is to ask a better question. Not only how bad is the pain from one to ten, that’s the standard question. Ask, what does the pain stop you from doing? And that question brings the person back into the picture. Because a number can be debated. A changed life is so much harder to ignore. So when our family began talking publicly about endometriosis, something unexpected happened.

Um people found us. Or maybe we found one another, but patients and families and clinicians and advocates just began started sharing stories through the Endodad page. And some had waited years for answers, some were still waiting, some were trying to make the pathway better from inside healthcare. And we have made incredible friends through this work. And I wish the common ground had been a concert, a hockey game, or some random conversation at an airport, but instead it was often pain.

It was waiting. It was the experience of knowing something was wrong without having the words or evidence other people expected. But the friendships became bigger than the reason that they began. And these people changed the way that I understand advocacy. They taught me that there is no single endometriosis story. Some people find treatment that gives them much of their life back, and others continue searching. Some have supportive families from the beginning, and others have to fight for belief at home before they can even begin looking for care.

And some meet a clinician who recognizes the pattern early, and that is so amazing. And others see several thoughtful providers before the pieces finally come together. Look, their stories are different, but one truth keeps returning. Nobody does this alone. Somebody listens, somebody notices that ordinary life is becoming smaller, and somebody stays curious when the first answer does not explain everything. And that person might be a parent, it might be a primary care clinician, we want more of those.

It might be a school nurse or a friend. The title matters less than the decision to stay engaged. And that is what the best friends we have made through this work do. They they stay. They do not require a perfect explanation before offering support. They do not pretend to possess every answer. They keep the person from carrying the uncertainty alone. And that is the beginning of a team. And before we talk about what that team looks like and why good doctors need to be a part of it, I want to take a minute for the company supporting this episode.

Well, this is really exciting, everybody. This episode is sponsored by Shaka Electric, my son Jacob’s new electrical company serving Courtaline and the surrounding North Idaho community. And yes, I’m a proud dad. I’m not even going to pretend to be objective about that, but I also love what Jake is building. Look, Shaka Electric is licensed and insured, and it is built around three things that matter in any kind of work character, competence, and communication.

They handle residential and commercial projects from troubleshooting and remodels to panels, lighting, EV chargers, and backup power planning. But the part I appreciate the most is that they start by understanding how people actually use a space before recommending what should go into it. Look, if you need an electrician in the Corleane area or you are planning a project and want the electrical thinking to happen before somebody starts cutting holes in walls, visit shakaelectricco.com.

Shakaelectric. Clean work, clear communication, and a company built to take care of people. Now, back to the other team we were we need to build. Look, I’m not here to shit on doctors. And I want to say this plainly. I I am not here to make providers bad. Look, I I employ lots of them. I work with them. Many of them are my friends. Most of them have the most kind, caring, compassionate hearts in the world. And I think in this story, it’s really easy to shift over and uh just kind of hate on the doctors.

Uh I mean, there are a few that might earn a little bit of grief, but look, people have huge hearts. This is a training problem. And so I say I’m not here to shit on doctors, and that might be the most elegant transition that I’ve ever written, but I mean it. Look, I’m not interested in building an audience by turning every delayed diagnosis into proof that clinicians do not care, because that’s just not true. Most providers I know have enormous hearts.

They entered healthcare for the right reasons, and they want people to get better. The thing is they work inside a system that demands speed while patients need time, and they make complicated decisions with incomplete information, they carry the weight home and come back the next morning to do it all again. They are not the enemy. A clinician can care deeply and still miss endometriosis. A clinician can listen sincerely and begin with the wrong possibility, and a clinician can follow the education that they received and later discover that the education did not prepare them well enough to recognize this pattern.

All of those things can be true. Missing something does not automatically mean somebody did not care. Sometimes symptoms overlap, sometimes the presentation is not typical, sometimes different parts of the story appear in different rooms, and sometimes the training has not kept pace with what patients and research are teaching us. And that is where we have work to do. That is there, this is not a shortage of good hearts problem. It is a training, time, coordination, and access problem.

And that’s where me as a healthcare leader, I need to do better. Sometimes, though, it is also a bias problem. And naming those gaps is not an attack on clinicians, it’s an invitation to improve the conditions in which good clinicians are trying to care for people. So if we turn every provider into a villain, we lose the people that we need beside us. So the goal is not to make a good doctor afraid of being wrong, the goal is to make it safer for a good doctor to remain curious.

And there’s a difference between saying you should have known immediately and saying, please do not abandon the question. That second sentence matters. A clinician does not need the diagnosis bef during the first visit to make the first visit valuable. They can say, I believe you, but I do not know the answer yet. Here’s what we’re going to do next. That right there is care, not false certainty, not an instant diagnosis, belief, honesty, and a plan.

Patients can live with some uncertainty when they know that they have not been abandoned inside of it. What becomes unbearable is uncertainty combined with dismissal. I do not know yet is honest medicine. There’s nothing wrong is a different conclusion. And we need to leave more room between those sentences. So clinicians cannot recognize patterns that nobody taught them to look for, and this is why training matters. Primary care providers, pediatricians, and school nurses may see some of the pieces along of the story long before someone reaches the specialist.

And that does not mean that every painful period is endometeurosis either, right? It means pain that repeatedly interrupts school, sleep, or ordinary life deserves careful attention. We need to ask about the pattern. When does it happen? What does it interrupt? Is it changing? Those questions do not diagnose a disease by themselves, but they make the experience more visible. They give clinical judgment more to work with, and that’s what we need. Better training does not replace a doctor’s judgment, it strengthens it.

But guidance only matters if it reaches the rooms where patients first ask for help. It cannot stay trapped inside a specialty journal or a conference. It has to reach primary care, community health, and the adults young people turn to first. And this gives me a little bit of hope because the field is changing. Newer clinical guidance recognizes that evaluation can move forward based on history, symptoms, examination, and appropriate imaging. The pathway does not always have to begin by making a patient wait for surgical confirmation before her experience is treated seriously, and that matters.

It can shorten the distance between something is wrong and we have a plan. But a guidance does not change care by existing. People have to learn it, organizations have to teach it. Clinicians have to be be given enough support to use it. Patients and families have to know what information will help, and that is how Path a Pathway improves. Not through one hero, through a team getting better together. So here’s an image that I keep coming back to. Too many medical conversations feel like courtrooms.

The patient arrives with evidence, the family arrives prepared to argue, the clinician feels challenged before the conversation begins, and then everybody takes a side, and then the pain is placed on trial. And that arrangement just helps nobody. The patient should not have to prosecute her own body. The family should not need to prove that it has done enough research. The clinician should not feel that anything short of an immediate diagnosis will be treated as indifference.

Everybody should be facing the same direction because the problem is over there. Let’s look at it together. A good team does not require immediate agreement. Good teams ask better questions and they revise what they think when new information appears. That’s how this works. The patient brings lived experience, the clinician brings training and judgment, the family brings support with the patient’s permission. But nobody carries the whole answer, and nobody gets pushed out of the conversation either.

If you are the patient, you do not need to diagnose yourself. Just tell the truth about what is happening in your own words. Notice the pattern and what it changes in your life. Ask what happens next if the first approach doesn’t work. If you are a parent, just listen before solving. That’s that was the hardest thing for me. But help record the pattern. But let the young person speak for herself when she can. We need to support without taking over.

Look, if you’re a clinician, explain what you are considering and create a follow-up plan. Make it clear that returning does not mean that the patient failed. If the symptoms do not fit, bring another person onto the team. A referral is not failure. A second opinion is not betrayal. Changing your mind when new information appears is not weakness. That is good medicine. A teenager should not need a medical vocabulary before an adult takes her pain seriously.

She should just be able to say, My cramps make me stop what I’m doing. I keep missing school. My body doesn’t feel right. Those are valid descriptions. That right there is health information. The goal is not to make her sound more clinical so she becomes more credible. The goal is to preserve her own language while helping the healthcare team see the pattern. Look, describing a body is difficult. Adults struggle to do it. We cannot expect a young person in pain to arrive with a perfectly organized presentation.

It just doesn’t work that way. She may not realize that several symptoms belong in the same conversation. And she may leave out something because it feels embarrassing or unrelated. She may become nervous and forget the detail that sounded important at home. And that does not make her unreliable, it just makes her human. Look, a better pathway helps organize the experience without replacing her voice. And that is the reason that I built out this new tool that I’m excited to share with you.

It’s called Period Pain Explained. You can find it at MikeBaker HQ.com forward slash I believe you. Look, the idea is simple. A young person knows what she is feeling, but she may not know how to turn that experience into words. That a doctor, a parent, a counselor, or another trusted adult could act on. The tool helps her do that. Look, I want to be really clear. It does not diagnose endometriosis. It does not diagnose anything. It does not recommend personal treatment or tell her that a doctor is wrong.

It is not medical care. I’m going to say that one more time. This is not medical care. Look, all this tool does, it helps organize what she is already experiencing into her own words. Look, the private check takes about three minutes. You don’t have to set up an account. The answers remain inside that browser session. They are not sent to me, a sponsor, or a social platform. I cannot see them. I don’t want to see them. This tool asks about symptoms, the timing, and the effect on daily life.

It can then organize those answers into a clear note for an appointment. Not a diagnosis, right? Not a diagnosis. It’s a starting point. Or here’s what I notice. Here is when it happens. Here is what it changes. Here is what I want help, understanding. The resource also offers language for asking a trusted adult for help. It also offers guidance for parents and clear information about when urgent care may be needed. One of the first responses it gives a parent is, I believe you.

Thank you for telling me. Just memorize that. When somebody tells you something, just say, I believe you. Thank you for telling me. Then we do not have to know the answer today. We will find the right help together. And that is the whole idea. Belief without pretending to know, support without taking over, a commitment not to leave someone alone with the question. Look, the tool is free. There are no ads or affiliate links. It limits, its limits remain visible throughout.

It is educational. It is not a diagnosis. It is not medical advice or an emergency service. I’m going to say that one more time. It’s not a diagnosis, medical advice or an emergency service. A qualified healthcare professional should evaluate symptoms and recommend care. Look, I am a dad and an advocate, and I have a big heart. I am not a doctor. The resource stays inside that boundary, and I think it’s a really good tool. But it this this tool also does not tell clinicians how to do their jobs.

It helps a patient bring information the clinical team can use. And I want clinicians involved in making it better. If you’re a healthcare professional listening to this, please look at it. I’ve had several people look at it already from the provider space, in the community, my family. Look, tell me where it needs more clarity. Tell me what information would make the appointment summary more useful. Tell me if something overreaches. Look, I do not need to protect the tool from correction.

Let’s fix it. Let’s make it better. The point is not to prove that I built something perfect. The point is to build something useful. A resource designed for teamwork should improve through teamwork. Alright, look, I just have to say this one more time. I need to say what this resource cannot do. A website cannot create more specialists, it cannot eliminate bias. It cannot guarantee a diagnosis, and it cannot return the years somebody already lost.

And it cannot replace a relationship with a clinician who remains curious and engaged. I do not want to oversell it. That would violate the entire point. But it might help one young person realize that her experience is worth mentioning. It might help one parent respond with belief instead of comparison. And it might help one clinician understand more quickly how the symptoms are changing in life. And it might create a better first conversation. And that matters.

The whole pathway does not have to change in one moment for one moment to become better. Well, look, our pathway took two years, and that was the lucky outcome, and I am grateful. I am not satisfied though. Those feelings belong together. The friendships we have made taught me that no one fixes this alone, not the patient, not the parent, not the clinician, not the advocate, and certainly not the dad with a microphone and an unhealthy relationship with new projects.

We need one another. We need clinicians who can say I do not know yet, but I am still with you. We need families who can say, I believe you, and we will find the right help together. We need training that helps people recognize patterns earlier. And we need pathways that do not require the right accident, the right connection, or the right moment of chance. I have not made peace with the weight. I do not think I should, and I’m not going to. I’m going to keep working on it within my team and anywhere that I can influence.

But I also do not want anger to be the only thing that I contribute. Anger can identify the gap, but it cannot build the entire bridge. That bridge has to be built from belief, training, information, curiosity, and teamwork. And that is slower than finding a villain, I get it. But it is also more likely to help the next person. So here’s what I want you to do. Go to MikeBakerHQ.com forward slash I believe you open period pain explained. Look through it.

If someone comes to mind, share it with her. If you are a parent, clinician, educator, friend, or advocate, use it to begin a better conversation, not to take control of one. And if you know somebody still waiting to be believed, send her this episode. Not because the episode contains her answer, it doesn’t. But send it so that she knows she does not need perfect words before asking for help. And then stay. Help her find qualified care. Remain curious if the first answer does not explain what is happening.

Do not turn uncertainty into disbelief. You do not have to know the answer today. You can still say I believe you. We will find the right help together. Look, two years should not qualify as lucky. The next girl should not need that kind of luck at all. Well, thank you for listening to Still Here, Still Trying. This episode is connected to this week’s Just an Ordinary Tuesday, the decade women lose before anyone believes them. You can read the essay and use period pain explained at MikeBaker HQ.com.

And thank you to Shocka Electric for supporting this episode. If you are in the Cordelane area and need an electrical team built around craftsmanship, planning, and clear communication, visit Shakaelectricco.com. And if this conversation brought someone to mind, send it to her. Nobody has to carry the whole answer, but all of us can make sure she does not carry the question alone. I’m Mike Baker. We are still here and we are still trying.