Ewa :
Welcome to No Taboo Mom podcast, where real stories inspire real change. My name is Ewa Gillen, and today we’re diving into a global health crisis that has been ignored for far too long. Endometriosis affects 1 in 10 women, and it takes on average 7 to 10 years to diagnose. So, to better understand the problem that so many women face, I invited my friend Shannon from Canada, who is unfortunately a victim of endometriosis. So let’s start with you. Welcome, Shannon. Thank you so much for joining us today. How do you feel today? How are you?

Shannon :
I feel good. I mean, physically, I feel great—better than I did in my 20s or 30s. I’m now… I’ll be 49 in a couple of days. And, you know, I’m starting to get older, but I don’t have that pain. It’s funny—I lived with it for so long that I just normalized it. I thought I was always going to be in pain. But yeah, I had that hysterectomy when I was 43, and life just changed. It got so much better. Imagine a life without pain.

Ewa :
How did you first realize that something was wrong? When was it that you first started feeling your symptoms?

Shannon :
It’s kind of funny. I’d always had painful periods, even when I was a kid. Not super long, but it was definitely a slow progression—and it got worse and worse over time. I went on birth control when I was 14 to help manage that pain. Like I said before, I had normalized it. And part of that is just what you do when you live with pain for so long—it creeps up on you, and you don’t realize how bad it’s gotten.

But when I really started to pursue a hysterectomy, I was probably in my mid to late 30s. A family member took me aside and said, “You don’t look good. Are you feeling okay?” I’d probably been not looking good and not feeling okay for a long time, but she finally said something. That’s when we had a real, honest talk. I had never really spoken to anyone other than doctors about how I was feeling, because I was so ashamed of it all.

After that conversation, she really encouraged me to find a doctor who would listen to me. We talked about how bad it gets, and she said, “The next time the pain gets that bad, you need to go to emergency.” But I just never went—I never thought it was that big of a deal. I had seen so many doctors, and they had told me so many times that it was all in my head, that I believed them. I doubted myself. That’s probably one of the worst parts of this whole thing—that I stopped trusting myself because the doctors said it was all in my head. And after a while, you start to believe that.

So that conversation with my family member validated what I was feeling. That’s when I started actively pursuing help. That was the turning point for me. But I had already been dealing with pain for decades.

Ewa :
What challenges did you face in getting diagnosed? Just the diagnosis—how long did it take until someone said, “This is endometriosis. That’s what you have.”

Shannon :
It’s funny—I never got an endometriosis confirmation until after my hysterectomy. The doctor who finally did it said, “We can’t diagnose these things until after the surgery. We’ll take a look at the uterus and the lining, and then we’ll know for sure what it was.” They didn’t really know why I was in that much pain. They had all kinds of ideas—maybe PMDD, maybe just painful periods—who knows? But it was never really looked into.

They told me they wouldn’t know until after the surgery, and I had to decide if that was a risk I was willing to take. And yeah, it was. Like I said, I had been in pain for decades.

I faced every challenge imaginable. I was made to feel like it was my fault, like I was wasting doctors’ time by being “dramatic.” I was told it was all in my head, that other women don’t complain about this—so why was I? I felt a lot of shame. And when you hear that from different doctors for years, you eventually stop speaking up. You start to doubt yourself.

Ewa :
Yeah…

Shannon :
And then I had that conversation with my family member, and that’s when I said, “Okay, I’m going to do something about this because it’s really affecting me.” Finally, when I was 43 years old, I found a doctor in Calgary who listened.

I also think that at that point, I had aged out of the window where they saw me as a potential mother. As long as they thought I might want kids, they refused to consider a hysterectomy—despite my repeated insistence that I didn’t want children. I had to wait until I was considered too old before they took action. So yeah, I endured that chronic pain for years.

Ewa :
Unfortunately, I’ve seen this approach from doctors so many times, and in so many different ways. You and I talked about it last time we met in Berlin—it was the same with me after my maternal birth injury.

When I was going to doctors with my complaints, they were just kind of saying, “Oh, you’re fine to have sex,” or, “Are you planning to have more children?” Because if you are, then they wouldn’t recommend surgery.

They didn’t really care that my muscles and bladder—and everything—were falling out of my vagina. Nobody cared about the quality of life I was having, or the quality of the sexual relationship I was having with my husband. The only question was:
Are you planning to have another child? Are you going to produce humans?

For the first time, I felt like the worst in my life. What is this? I can’t believe you’re asking me that question. I don’t want to talk about what my body is still capable of producing. I want you to focus on what I’m saying about my symptoms—how I feel about them—and how you can help me. Not future me. Not my husband. Not my child. What about me?

And it sounds like, once again, this is a global problem. It’s very upsetting.

Shannon :
Yeah. It’s systemic.

Ewa :
One more thing I want to ask—because you said only after the surgery they were able to give you a full diagnosis. Is this something that happens a lot?

Shannon : 
I don’t know. I know that when we spoke a few years ago in Berlin, we talked about this at length. You told me that what the doctor said—about not knowing until after the surgery—wasn’t entirely true. But I only know what that doctor told me.

At that point, I didn’t care whether it was diagnosed before or after. I just wanted to do something to fix myself in the moment. I couldn’t take the pain anymore—I couldn’t function, I couldn’t live my life. So yeah, okay, fine. Diagnose it after. I didn’t really care. I was willing to do anything to feel better and live my life.

Ewa :
So how did endometriosis affect your daily life and work? What were the symptoms, and how did you feel? Not only during your period, but just in general?

Shannon :
Like I said, I’d always had heavy, long periods—and they were progressively getting worse. That’s challenging because it sneaks up on you. But at its worst, in my early 40s, it was debilitating. Many days I couldn’t get out of bed to work.

At that time, remote work wasn’t common. I had to go into the office five days a week—and I physically couldn’t do it. I burned through sick time in a matter of months. I had to use vacation days to cover absences.

At work, my credibility suffered too. I was always sick, but I wasn’t comfortable explaining my condition to my male boss—nor should I have to. It strained personal relationships. People didn’t really understand—men and women. They couldn’t relate.

The shame was overwhelming. Doctors kept telling me it was all in my head, so I tried to hide it. I took painkillers that didn’t help. I spent half my life in bed. My periods lasted two or three weeks at a time, with only one pain-free week a month before the cycle started again.

It just sucks. Even my husband at the time—we’re not together anymore—he didn’t really understand or fully believe me. He tried to be supportive, but it took a toll on my relationships with friends and family.

Ewa : 
Yeah, of course. Is there any treatment today? Is there anything that can help?

Shannon :
I think there are some things that can help. It depends on the person.

For me, birth control was not good. I think I was 14 when they first put me on it. And by 34, I was fed up. I had had enough and decided to go off it, but it never agreed with me. I tried every type of birth control. Nothing worked for the pain. Oftentimes it made things worse.

Birth control always made me feel mentally unwell—like I was out of control, like I wasn’t myself. It completely disrupted my hormones.

So for 20 years, I was on it. At 34, I stopped. I was willing to risk pregnancy just to stop taking it. What I didn’t know at the time was that I was never going to get pregnant—because I had endometriosis.

So yeah, I spent 20 years on a medication that made me physically and mentally sick. It wasn’t until nine years later that I finally got a doctor to listen to me and give me the treatment I needed.

As far as other things I know about now—ablation can help. That’s one thing I never did. They say different types of birth control can help too, but for me, nothing worked.

Ewa :
Do doctors really say things like, “Get pregnant to cure endometriosis”? Because that’s what I kept hearing when researching this condition—that some doctors actually recommend pregnancy as a solution. Have you ever heard that?

Shannon :
I’ve never heard that, but I was always very clear that I didn’t want children. So they never floated that idea to me—they knew I wasn’t interested.

I don’t know if other women have been told that. It seems like a rather extreme “solution,” but… yeah.

I had one doctor—a female doctor—say to me:
I flat out asked, “Can I get a hysterectomy?”
I think I was in my early 40s. I said, “I’ve been dealing with this for so long. Nothing works. Isn’t there anything you can do? Can I get a hysterectomy?”

And she said, “I’m sorry, there’s nothing we can do for you.”

And that was flat-out a lie. It just was.

Ewa :
So, we already know that the healthcare system in Canada is not great—just like in many other countries.

Shannon :
Yeah, from what I’m saying… it’s not great.

Ewa :
Not great. I mean, I say this as someone who has experience with the Polish, German, and Spanish healthcare systems—and also Canadian and Australian. I just don’t see where it’s going. It still feels like women’s pain, women’s health conditions—everything we feel and say—is being ignored. Again and again and again.

But is there anything specific in the Canadian healthcare system that you would say, “I wish this would change”? Are there any improvements, especially for women affected by endometriosis, that you think would really help?

Shannon :
Yeah. I do think it’s a systemic problem—not just in one country or another. It’s in all countries. The healthcare system needs to listen to women and take their concerns seriously. There’s a bias that needs to be acknowledged and dismantled.

Real change, as with anything, starts with awareness, education, and a shift in mindset—and that takes time. I do think it’s getting better. It’s been maybe six or seven years since I had my hysterectomy, and I still follow articles about endometriosis and women’s healthcare. I’m passionate about it, and I do see a shift.

But that shift doesn’t happen on its own. It takes conversations like this. It takes people speaking up, being brave, telling their stories, and truly listening to women. It’s going to take time, but it’s also going to take work.

Ewa :
That’s true. And we’re doing this right now because it’s March—endometriosis awareness month. Julia and I were just researching all these accounts, and at first it was like, “Oh my God, there are so many women out there.” We felt excited to connect with them.

And then it hit me—I’m not happy about it. There’s a huge number of women suffering from this. I started looking at these accounts and saw thousands and thousands of followers—in Germany, Canada, Australia, and everywhere. And I thought, “I can’t believe there are so many advocates out there… and it’s still such a big problem.”

I mean—1 in 10 women!? If you look at your group of friends—1 in 10 of them is likely suffering from endometriosis. It’s insane.

Shannon :
It’s more than that. I really think it’s more than 1 in 10. Especially as we get older—it just gets worse with age.

But women don’t report things. We just live with them. We just suck it up. So I think the actual numbers are much higher.

I personally have a lot of friends who are going through this or have been through it. And it sucks. When you’re down and out, the last thing you want to do is gear up for a fight—just to get someone to listen to you. But unfortunately, that’s what you have to prepare yourself for.

Ewa :
I know Australia is working on new solutions—new tests and things like that. They’re supposed to be similar to the tests used for COVID, so hopefully they’ll be accessible. Poland is also working on something.

But still, I can’t believe it takes this long.

What really scares me is that I think there are way more women than we know who are dealing with this. Some are extreme cases—women who are literally seeing stars from the pain. They can’t function, so they eventually go and find out what’s going on.

But then there’s this other huge group of women who might have milder pain—or maybe they just don’t complain.

You know what I mean? That’s the “standard” one.

And I think they keep quiet because it’s stigmatized, because it’s ignored, because no one really cares. And that really, really makes me angry.

Shannon :
Yeah, it makes me angry too. Especially after 20 years of just trying to get someone to take me seriously.

But I think there’s something about my generation of women—and definitely my parents’ generation—we were told to suffer in silence. Don’t complain. Make yourself small. Don’t speak up.

Changing that mindset will take time, too.

I really believe there are so many women out there suffering from this, and they’ve just been told so many times that it’s “all in their head,” that they start to believe it. I did, for a long time.

And then you start to blame yourself. And that’s a horrible way to live.

It’s so prevalent. And while I’m glad to hear there are changes being made… I mean, for God’s sake—it’s 2025. This should not still be an issue.

Ewa :
Is there any additional advice you would give to women who are listening right now and thinking, “Yeah, I’m suffering from this—what do I do?” Is there anything you can tell them that might help?

Shannon :
Yeah, I think it really helps to have support. I keep thinking back to that family member who pulled me aside and said, “Are you okay? You don’t look good.”

Surrounding yourself with people who care about you—good people who will tell you the truth—is so important. But most of all, you have to be your own advocate. Nobody knows your body better than you—not even a doctor.

If a doctor dismisses your pain or tells you it’s all in your head, move on. Find another doctor who will listen.

Never, ever give up.

So many women share this struggle, and the common thread is that we’ve all had to fight—to be heard, to be taken seriously, or just to receive fair treatment.

Not to get political, but if recent events in the U.S. are any indication, women’s healthcare is still under threat. So my advice is: be prepared to stand your ground. If a doctor isn’t listening, don’t waste your energy. Find someone who will—because they are out there.

Stay strong and don’t give up.

Ewa :
I think that’s already such a powerful message to share with women. This is exactly what we need—to be honest. Because listening to our bodies… it’s probably something that’s been taken away from us.

I remember the conversation you and I had in Berlin, and that was exactly it: the way we were all raised was to ignore most of these symptoms.

Shannon :
Exactly. And to smile.

It was only after my hysterectomy—and it took some time afterward—I didn’t feel great immediately. I’d say it took six months to a year for my body and my hormones to normalize.

But once the pain was gone, I could finally listen to my body again. And it was like everything I was born with came back to me. I started to believe in myself again.

I could see clearly just how much pain I had been in. I couldn’t believe I had lived my life like that for so long. It was so unnecessary.

It changes your choices, your decisions, your relationships—it changes everything. It will change your life. But it was only after I had the hysterectomy, and after giving myself time to heal in my new, healthy body, that I could finally reflect and see it for what it was.

When you’re in it, it’s really hard. You need good people around you. But most of all, you need to stand up for yourself. Don’t take no for an answer. Find another doctor. There are lots of them out there.

Ewa :
I love it. Thank you so much for that. It’s really powerful. And thank you for being brave and speaking up about it. I really appreciate it. And thank you for joining the brave women of No Taboo Mom.

Disclaimer :

Oh, wait—before you go, here’s our disclaimer. Listen up, it’s important.

The No Taboo Mom podcast is for informational and entertainment purposes only. The views and opinions shared are personal experiences and should not be considered professional medical, psychological, or legal advice. Always consult with a qualified professional for any concerns related to your health, well-being, or personal circumstances. The hosts and guests of this podcast are sharing their own insights and do not take responsibility for individual decisions made based on this content.

All right, that’s it. See you next time.