Endometriosis is often a very painful, isolating condition. According to the Endometriosis Network Canada, it affects approximately one in 10 Canadian girls and women, and unmeasured numbers of transgender, nonbinary, and gender diverse people. When conception and pregnancy come into play, the stress and uncertainty associated with this chronic illness can intensify.
If you are someone on this journey, you already know how difficult it can be. After speaking with people who are going through it, or are on the other side of it, here are some important takeaways.
The Possibility
While endometriosis can cause fertility issues in some people, this does not mean you can’t get pregnant. It simply means conceiving may be more challenging for you than other folks. There are a few reasons why this could be, including the presence of a certain type of ovarian cyst called an endometriomas, as well as adhesions and egg quality. The possibility of pain during sex reduces the likelihood of intercourse, and subsequently has an impact on conception as well.
Studies show that 30% to 50% of women with endometriosis are unable to conceive, which is higher than the percentage of those without the condition. The endometriosis stages range from one to four, and while these levels of severity can impact one’s likelihood to become pregnant, it isn’t always the case.
While trying to conceive, ovulation tests can be a very useful tool for monitoring the presence of the luteinizing hormone (LH).
The Risks and Challenges
There are higher miscarriage rates in those with endometriosis, and placenta previa and preterm birth are also risk factors to be aware of.
Raina Norman is a mother of a 7-month-old son, who she calls her “miracle” child. Raina has suffered with endometriosis symptoms since her first period at age 12. After a traumatic medical experience, the disease worsened. In addition to pelvic pain, she had contractions so bad she would sometimes vomit or lose consciousness. By the age of 22, it had taken over Raina’s life—it impacted her ability to study, work, and have sexual relationships.
Raina and her husband first conceived in 2020 but miscarried at nine weeks. A few months later, she experienced a chemical pregnancy. She tells me her third pregnancy was “successful” but challenging, due to her high blood pressure, gestational diabetes, and pre-eclampsia, which led to an emergency C-section. Enduring all this in the midst of a pandemic was particularly stressful.
The Pressure
Amanda Bernardo is a woman with endometriosis who is currently trying to conceive with her husband. She says the external pressure to follow our culture’s expected timeline when it comes to motherhood have heavily weighed on her since her diagnosis.
“I fell into a deep depression because so many ‘what ifs’ began to consume me, and the stress of not knowing if one day I could conceive ate me up,” she says.
“People ask questions without necessarily knowing how these questions make someone vulnerable.” Amanda says for those in a supportive role, it’s important not to assume the traditional sequence of events is for everyone, and to always be mindful of the language we use.
The Hope
While Raina’s experiences with conception and pregnancy were far from idyllic, she says “the instant he was placed on my chest, my heart exploded. It felt like everything in my life led to this moment. I really, truly never believed this would happen.”
Katie Luciani, the Executive Director of The Endometriosis Network Canada and mother of two, has struggled with endometriosis since her first period at age 11. She describes it as a “very lonely experience.”
Katie would miss a week of school every month because of the agonizing pain she felt. It wasn’t until age 27, after two laparoscopic surgeries, that she was diagnosed with endometriosis.
But Katie echoes Raina’s sentiment of love and hope when it comes to conception and pregnancy, despite the challenges. “I recognize that I am very lucky to have been able to naturally conceive and carry full-term pregnancies,” she says. “I know not everyone has this same experience...I try to keep that top of mind on days when I am overwhelmed with motherhood while managing a chronic illness.”
While Raina and Katie conceived without IUI (Intrauterine Insemination) or IVF (In Vitro Fertilization), these assisted treatment options can be used if conceiving naturally doesn’t work. Many experts suggest trying for six months before seeing a fertility specialist, although this is somewhat dependent on factors like age.
Amanda says hope, along with her strong sense of faith, “allowed me to hold on to optimism when my fears and anxiety tried to drag me down…Without hope, I don’t think I would have been able to overcome my initial depression upon diagnosis.”
The Need for Change
Both Raina and Katie had a long road to finding a diagnosis and treatment that helped their symptoms. This is a common experience for those with endometriosis. While it’s an ongoing battle, and motherhood has not gotten rid of their symptoms, things have improved.
In her 20s, Raina’s frustration over the lack of medical answers left her suicidal, fantasizing about cutting her stomach so a surgeon would be forced to look inside and discover what was wrong. She was put on opioids, but they only took the edge off the pain. She waited years to see the appropriate specialist and was then put on a hormone suppressant. Raina says this helped, but she began to experience medical menopause. Surgery to remove scar tissue lessened the severe pain she was having during sex.
When she wanted to start having kids, she was further frustrated by the medical process and the red tape around access to excision surgery, particularly in her home province of Nova Scotia. “I felt very gaslighted by the system,” she says, and insists Canada needs a national plan around endometriosis. “I would love to see the government take on an educational campaign.” She also says there needs to be work and awareness around trans people’s experiences with endometriosis.
Katie believes the government needs to be more aware of the difficulties people with endometriosis face, particularly when trying to conceive. She says this requires much more support, not only financially, but also emotionally and socially.
The Importance of Self-Advocacy
In terms of advocating for yourself, Raina recommends talking to your doctor about safe pain management before going off any meds to try to get pregnant. She also suggests discussing endometriosis flares with your employer to see if they can be flexible, and to access mental health care if you are able to (though she acknowledges this is not possible for everyone). Having frank discussions with your partner can help you both prepare for what’s to come, and diet changes can be useful as well. But Raina says it’s also important to remember that endo has no cure. You are not a failure if these things don’t help. It’s key to trust your body and listen to what works. “Do what you need to feel well,” she says.
Katie stresses the value of building a strong support network while trying to conceive, and asking for help when you need it. She tells me, “Having spaces for people to go to share their journeys and speak about similar experiences in a supportive and inclusive environment is really important.”
Amanda agrees. At the start of her journey, she was desperate to find a community, to connect with someone who walked in her shoes. She says writing about her journey on her blog established an online community of her own, which gave others the courage to share their experiences.
Whatever your path to building a family looks like, the most important thing to remember is that you are not alone, and your difficult feelings are real and worthy of being acknowledged. Take care of yourself, and allow yourself the space to process the struggles and to appreciate your own strength.