When Jess Taylor was diagnosed with endometriosis at 20, the news was devastating. Doctors told her that conceiving naturally might be “very unlikely.” As someone who had always believed her body was naturally designed to bear children, the diagnosis was overwhelming. “The grief you go through is significant,” she shares. “You think ‘my body as a woman is built to grow babies,’ and now I’m being told that I can’t do that.”
Despite the early prognosis, Jess’s journey toward motherhood did not end in despair. Today, she is a mother and the CEO of QENDO, an organization dedicated to supporting individuals affected by endometriosis and related pelvic health issues. Her personal experiences with the condition inspired her to help others navigate the emotional and physical challenges, including the impact of endometriosis on fertility.
Endometriosis, a condition where tissue similar to the lining of the uterus grows outside of it, affects approximately one in seven people assigned female at birth. Its connection to infertility is complex, with many women struggling to conceive due to various factors associated with the disease.
According to Katrina Moss, a public health researcher at the University of Queensland specializing in reproductive health, the disease disrupts fertility in multiple ways. Inflammation caused by endometrial tissue can hinder the process of embryo implantation, interfere with egg development, and disrupt ovulation. Additionally, the condition can block the fallopian tubes and affect the hormonal balance of the ovaries, all of which can complicate conception.
“Where endometrial lesions are located can make a significant difference to fertility,” explains Ms. Taylor. “If the lesions are on the ovaries or fallopian tubes, fertility issues are more likely to occur.”
Surgery to remove endometrial lesions, particularly from the ovaries, can also impact ovarian reserve—the number and quality of eggs remaining in the ovaries—and how well the ovaries respond to fertility treatments. Despite these challenges, Dr. Moss emphasizes that not all individuals with endometriosis will struggle with fertility. Studies indicate that around 40% of women with endometriosis face difficulties conceiving, while 60% do not experience fertility issues.
However, Dr. Moss points out that data on endometriosis and infertility can be tricky, as many women have the condition without being diagnosed. On average, it takes about seven years for a diagnosis to be made. “A lot of women with endometriosis remain undiagnosed, and this contributes to the complexities of understanding its full impact on fertility,” she says.
Dr. Moss’s research, particularly within the Australian Longitudinal Study for Women’s Health, has revealed that 47% of women diagnosed with endometriosis have trouble conceiving, a rate significantly higher than the 23% of women without the condition. For those with both endometriosis and polycystic ovary syndrome (PCOS), the infertility rate rises to 67%.
Jess Taylor agrees with the commonly accepted infertility rate of 30-50% for people with endometriosis. However, she also notes that some research, such as a 2018 study from Queensland University of Technology, found that infertility is diagnosed in 10-15% of women with endometriosis.
The path to conception varies for every individual with endometriosis. Ms. Taylor explains that many women who undergo a laparoscopy to remove scar tissue or adhesions may find they are able to conceive naturally afterward. For others, a pelvic health physiotherapist might be helpful, especially for those who experience pain during intercourse, which can be another barrier to conception.
“Treatment and outcomes are very individualized,” she stresses.
For women struggling with fertility due to endometriosis, early diagnosis is crucial. Dr. Moss’s research shows that women who are diagnosed with endometriosis before starting fertility treatment have better outcomes in assisted reproductive technologies like IVF. Those with undiagnosed endometriosis are less likely to succeed with fertility treatments and tend to take a longer and more difficult path through multiple cycles.
People who know about their endometriosis tend to follow a more targeted treatment path, such as skipping over intrauterine insemination (IUI) in favor of IVF, which might be more effective for them,” Dr. Moss says. “In contrast, delayed diagnosis can significantly reduce success rates.”
Still, Dr. Moss emphasizes that fertility treatments like IVF are not a guaranteed solution. “Many people don’t hear the success stories, but not everyone has a happy ending,” she says. “In our study, one in four women under 35 and one in two women over 35 stopped fertility treatments without having a baby.”
Having gone through her own fertility struggles, Dr. Moss understands the emotional toll firsthand. “We went through 13 cycles, and it didn’t work for us. It was honestly the hardest thing I’ve ever done,” she admits.
For women with endometriosis, the journey to motherhood can be long and challenging. But with the right support, early diagnosis, and tailored treatment plans, there is hope. Jess Taylor’s advocacy work at QENDO is a beacon for many facing similar challenges, showing them that while the road may be tough, they are not alone.
Related topics:
Which 5 HRTs Are Best for Fibroids?
