Diagnosed with Asymptomatic Endometriosis after Years of Unexplained Infertility

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If this is the first time you’re reading about our infertility, I recommend you start at this blog post! 

When you struggle with any infertility, but especially Unexplained Infertility, your life—broken down into months—is a rollercoaster of emotions. Each month is filled with feelings. Hope, frustration, excitement, and devastation, to name just a few of those feelings. And then the ride begins again.

This past year—our sixth trying to conceive and our first trying to adopt—was possibly the best and worst of all the ones before it, with the most wide range of emotions. 

We felt loss moving forward with adoption as it meant we were closing the door on conceiving naturally. We felt hope while working through the adoption process, as it felt like we were getting closer to growing our family, even if it wasn’t in the way we had imagined. We felt anger and frustration, when the adoption agency we were working with suddenly announced it was closing its doors. What a waste of a year, we felt. What a waste of money. We felt sadness and even a bit of guilt, as with each month that passed where we remained childless, we grew just a little bit more comfortable with the idea that kids may not be a part of our story.

Then there was hope again.

One of our dear friends Alicia, who happens to be a gynaecologist, reached out to us earlier this year to share some research she had been doing about the possibility of “no symptom” (asymptomatic) endometriosis.

This is what she told us: 

“We come across a lot of women who have endometriosis, who have associated infertility/subfertility. Usually the women we see have associated symptoms (pelvic pain, painful periods, painful bowel movements, painful sex, etc.), but there’s also literature that suggests even without symptoms, women have Unexplained Infertility and normal ovulation and normal sperm parameters have a higher prevalence of endometriosis (like upwards of 30-60% depending on which study you look at)” compared to women who do not have infertility.”

Up until that point, I didn’t know really anything about endometriosis—with or without symptoms. 

When we were diagnosed with Unexplained Infertility (I still think it doesn’t count as a diagnosis, because what kind of diagnosis is, we don’t know? lol), we had basically been cleared of having any medical condition that might be affecting our chances to conceive naturally.

I had worked with someone years before who had endometriosis, but all I knew about it at that time, was that it gave her severe pain to the point where she couldn’t come into work. I hadn’t realized endometriosis could affect fertility. And back then, when you’re not thinking that you’ll have any issues having a baby, which most people don’t consider, you don’t really press for more information about possible infertility causes. And for some women who do have symptoms with their endometriosis—it may not even affect their fertility.

So when my gynaecologist friend Alicia told me about this no-symptom endometriosis, she also said there was a surgery I could take to see if I had it. I learned that this surgery is the only way you’d be able to tell if you had no-symptom endo. You need to do a laparoscopic surgery to confirm if you have asymptomatic endometriosis, in order to remove it.

It apparently can’t be discovered any other way.

And if it no-symptom endometriosis is found and removed, this can improve fertility. 

Now at this point in the story, I acknowledge that I live in Canada. We have great health care, and it’s free.

I asked Alicia if this surgery was low risk and covered by our health care. She told me yes. 

It wouldn’t cost anything. It wouldn’t hurt to help rule out. 

So for us, going down the path of trying to get the laparoscopic surgery to determine if I have no-symptom endometriosis and remove it if I did, wasn’t a difficult decision. If they found nothing, well, we were used to disappointment when it comes to our fertility story so it wouldn’t have been a big deal (just another notch on this disappointing fertility belt). I know that for others who struggle with infertility—Unexplained Infertility—somewhere health care isn’t covered, doing this surgery may not be as easy a choice to make, or a choice you can or want to make at all.  

Removing endometriosis if you have infertility does not guarantee you’ll be able to conceive. 

But if all other infertility factors have been ruled out as to why you may be infertile, then removing no-symptom endometriosis can improve your chances at conceiving naturally. 

How much this can improve your chances varies. Alicia tells me that in fact, medical guidelines on treating unexplained infertility do not recommend laparoscopic surgery for everyone to diagnosis endometriosis in the absence of symptoms or clinical evidence of endometriosis. However, if symptoms are present, or if unexplained fertility is prolonged and IVF is not a viable option, that surgery can be considered. (I think if other options have been ruled out and there aren’t any symptoms, and it won’t cost you anything, why wouldn’t it be a surgery you are able to take?)

And if you’re planning on doing an IVF (in vitro fertilization) procedure to have a baby, your chances would apparently still be much higher through IVF than trying to conceiving naturally after surgically removing endo, so depending on your situation, it might not really make sense to do the endo surgery. 

(If you’ve been following our journey, you may recall that Mike and I have gone through three unsuccessful rounds of IUI intrauterine Insemination but had decided to try adoption last year instead of IVF—so IVF is still something we can and plan on trying in our infertility journey).

While it can be a win, if you have Unexplained Infertility and they find no-symptom endometriosis and remove it, you may still have better options, depending on of course, your unique situation.

Alicia told us that removing endometriosis if you have unexplained infertility may increase your chance to conceive naturally / ‘spontaneously’ (10-50% chance within one year, depending on your personal history—age, number of years with infertility, and number of previous pregnancies and the appearance and function of ovaries and Fallopian tubes at the time of surgery).

(See this study about the “Endometriosis Fertility Index”).

In a landmark study in 1997, dubbed the “EndoCAN” study, 341 patients with Stage I-II endometriosis were randomized to diagnostic laparoscopy only (“look, don’t treat”) vs excision or removal of endometriosis. The study found that surgically removing endometriosis in these women made them about two times more likely to conceive and carry a pregnancy that went past 20 weeks.

There’s also this 2013 study “Natural conception rate following laparoscopic surgery in infertile women with endometriosis” (with a smaller group of patients) that found:

“The natural conception rate was 41.9% during the first year after laparoscopic surgery in infertile women with endometriosis and no other factors. This information should be useful to infertile patients seeking treatment for endometriosis and the physicians counselling them.”

So I was referred to minimally invasive gynecologic specialists in Calgary. I was put on a wait list and told it could take up to a year to get in to do the surgery. By this time, we knew our adoption journey was ending abruptly, and that we would try IVF next summer (2021), so waiting a year to try this thing, that we didn’t even know was an option just a few months before, was no sweat. 

But then this summer I got a call that there had been some cancellations and if I could come to Calgary on short notice, I could do the surgery. 

No Symptom Endometriosis Laparoscopic Surgery at South Health Centre Calgary
Pre-surgery selfie with my dear friend Rachel, who drove me to the surgery in Calgary as Mike was working out of town.

Long story short, I did the surgery. The doctors did find endometriosis in me. Stage 2 endometriosis. (There are four stages, with the fourth being the most severe). No symptoms. 

Now, they can’t say for sure that this no-symptom endometriosis was causing our Unexplained Infertility. But, when there is nothing else to explain why we can’t conceive naturally, they say it’s a “likely cause.” 

Back to that rollercoaster. 

We were expecting them to find nothing because for the last six years there’s been no reason for our Unexplained Infertility, why should there be a reason now? 

We were also hoping they would find something because, to finally have a possible answer to why we haven’t been able to have a baby, a real diagnosis and not a ‘we don’t know’ diagnosis, that would have maybe given us some peace in a way. Less questions and wondering, at least. Something to blame. 

It feels weird to root for something to be wrong with you but a cause is better than never knowing why.

And then there was of course anger.

Why didn’t our regular doctors, our regular gynaecologist, why didn’t they tell us no-symptom endometriosis could be something I might have? Why isn’t there a professional, expert-recommended checklist that those struggling with Unexplained Infertility can work through, step by step? Why did we only realize this surgery even existed, was a path we could try to go down, because we happened to have a friend who happened to be a gynaecologist, who happened to want to share some of the readings she was doing to try and help us? 

It’s baffling. And so frustrating. 

No Symptom Endometriosis Laparoscopic Surgery at South Health Centre Calgary
Going in to see if I have no symptom endometriosis! (Screenshot from a video Rachel took, that's why it's blurry lol).
No Symptom Endometriosis Laparoscopic Surgery at South Health Centre Calgary
FaceTiming with Mike after the surgery. Hopped up on drugs, lol.

I wrote just a few paragraphs before this one, about how we have free healthcare in Canada, which is great. But at the same time, it’s not? Because you still have to advocate so hard for yourself or have someone who knows something more about a medical condition that may be able to lead you in the right direction, if you want to figure out what’s actually wrong with you. Before Alicia reached out about the idea of asymptomatic endometriosis affecting our fertility, we were under the impression—after countless doctor visits—that there was no reason for our inability to conceive. Because that’s what the system told us. Not to say though that it would have been any different or better in a private healthcare system. 

When I shared about the discovery of my no-symptom endometriosis on social media after the surgery (August 2020), I had so many women reach out to tell me their own struggles with the health care system. 

Women who HAD symptoms for their endometriosis, and still couldn’t get surgery to help remove it. Women who asked their doctors and their gynaecologists to refer them to specialists so they could try and get a laparoscopic surgery to see if they might have no-symptom endo, but their doctors or gynaecologists wouldn’t refer them. Women who think they have endometriosis because they have severe cramping and other symptoms but their doctors say they’re overreacting, it’s probably just period cramps. Women who went from one specialist to the next, each specialist saying they might have this or that, when it was actually something else. Women who simply get told if they lost weight it would solve their problem, regardless of what their problem might be.

Even before this, we had felt frustrated because we did find depending on which doctor, type of doctor, type of science, we talked to or looked into, or what we were able to research online and suggest ourselves, the opinions are so varied. Does fertility acupuncture help? Should we be measuring our temperature? Tracking our ovulation? Should we be trying herbs? Vitamins? Other pills? What about this? What about that? The answer really depended on who you talked to. 

So, anger and frustration. What ifs. Lost years.

Had we known about this possibility, this improved chance of fertility if we removed no-symptom endometriosis years ago, would we have a baby today? 

In all of my fertility updates, I make a point to stress that, Mike and I are very happy with our lives. We have a family. Our fur fam. Our two dogs and two cats who we love so dearly. And each other. We’ve had amazing opportunities and we’ve been able to do a lot of things we’re proud of. We have some amazing memories. And we’ve done lot we probably wouldn’t have done honestly if we had had a baby when we were ready to, over six years ago. Not that it would have been worse or better, but it would have been different—life. 

So discovering this no-symptom endo, and wondering if this could have helped us conceive years ago, is absolutely on our minds, we’re absolutely frustrated, but at the same time, we’re not unhappy. 

I do believe things happen for a reason. I do believe in timing. If we’ve struggled with Unexplained Infertility, it’s taken us this long to find out about no-symptom endo, or the adoption agency that we chose ended up shutting down within the year that we chose them, I do believe there’s some greater power at work here. Maybe that makes me sound a bit kooky. I’m not religious, but I am spiritual. So I do like to believe that a baby is still in our future, but if it is taking this long to get here, perhaps it’s because everything that has happened for us without the baby, needed to happen first. Maybe. Who knows?

Shortly after removing the endometriosis, Mike and I had a window where we could have conceived naturally. This was another ride. My period was late—later than it’s ever been (and it’s rarely ever late). I was having weird dreams. I was banking on that “timing is everything” notion. I was so sure. I even managed to get Mike a little hopeful again—something that he’s tried to close off, to avoid feeling the pain we used to feel every month. We started discussing ways to tell our parents. And then I got my period.

That cruel, cruel ride. When will we get off of it? 

With Mike’s work schedule taking him out of town regularly, we won’t really have a true, consistent shot at conceiving naturally until the new year. We’re still planning on trying IVF next summer as well. I don’t think we can fully give up on this until we’ve tried IVF. 

But—and with each update, I’m saying this more as well—we’re getting to a point where I think we’d be okay if we didn’t have a baby. It breaks my heart. It brings me to tears, to write that. But I think we’d be okay. We can imagine a life without a baby. We’ve been living that life. I still believe Mike would be the very best father, and it continues to be painful to see baby announcements, baby showers, kid birthdays, and the like (honestly, exercising that mute button on social media is extremely helpful for my mental health). But it will be okay if he isn’t a father. It will be okay if I don’t end up being a mother. It hurts. But it will be okay.

We believe this. We wouldn’t have felt this six years ago but we feel this more now. 

We’re not done trying yet but we’re getting closer to that outcome. Finding and removing my no-symptom endometriosis did give us renewed hope. It’s the pain that comes with hope that we don’t want. That we didn’t miss. 

We’re so grateful to our friend Alicia for letting us know that asymptomatic endometriosis existed, that it could be a cause of our infertility, for referring us to specialists, for giving us hope again. It had been a long time since we had felt we had options to conceiving naturally. That door sort of feels like it closes when the doctors give you an Unexplained Infertility diagnosis. But we opened it just a smidge again. 

There’s hope. We still have it.

Mike and Linda
Mike and I celebrating our 11th togetherversary this fall (Sept 2020). Photo by: Dallas Curow.

If you’re interested in learning more about endometriosis and how it may affect infertility, my gynaecologist friend Alicia is actually part of a new endometriosis advocacy group called EndoAct Canada that hopes to raise awareness of endometriosis, define current gaps in care (which may include the fertility bits), and “partner with health decision-makers to generate the knowledge required for evidence-informed policy.”

Until the next update! 

Linda

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3 Comments

  • Avatar Genevieve Laity says:

    Thank you for sharing this. I’ve been thru infertility and adoption and I don’t think you ever give up trying, even if it’s just in your own head, again, thanks for sharing this, you write about such a difficult situation so beautifully and honestly.

  • Avatar Tan says:

    I have also been diagnosed with stage 3/4 endo with no symptoms. It’s difficult to comprehend how it can happen to someone without any symptoms. I guess it’s more common than I thought. I also did have to fight for myself to see a specialist so can understand the rollercoaster it can take you on.

  • Avatar Nat says:

    Married 1999 no birth control the entire time, always painful periods. One wonderful fur baby too! Went to doctors for years….in 2014 yes that’s right got a laparoscopy because they suspected endometriosis. I had stage 3. We had sex a week after I recovered. Became pregnant. My dear son is the result.
    Infertility is incredibly difficult. I see you. But the tissue that’s removed makes it possible…so many kindred thoughts with you. It is a very difficult journey and my anger at how women’s pain and periods are brushed off is off the charts. We will never stop fighting to be heard! Hoping and praying for you guys.
    I hope this information will encourage all doctors and women to take notice of how endometriosis can be the cause of much unexplained infertility. Here’s hoping,

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