The unspoken emotional toll of secondary infertility

Texas native Kelly Matthews, 36, and her husband always knew they wanted a big family. “Even before we got married, it was something we talked about,” Matthews says. But growing their family has not come easy to them. Matthews is a cancer survivor, having been diagnosed with leukemia when she was 21 and entering remission when she was 23, and cancer treatments can impact fertility. Matthews and her husband tried for seven years to get pregnant, during which she experienced two heartbreaking miscarriages, including one during the second trimester that required surgical intervention. “Then, we had my son, Jack, by some sort of miracle when I was 31,” she says.

When they started trying to get pregnant again, Matthews had two more miscarriages. Given her medical history and the fact that they were financially prepared, she and her husband decided to pursue in vitro fertilization (IVF). Ultimately, it was successful and she gave birth to twins, a boy and a girl, who turn four this summer. The couple had the rest of the eggs retrieved during the first part of the IVF process frozen and saved for the future.

Because IVF had been successful the first time, they were hopeful when they turned to it again two years later. But this time, it didn’t work, and Matthews experienced an additional two miscarriages. She was set to try the process again this year, but then COVID-19 hit and now her treatment has been put on hold. The rollercoaster of miscarrying, successfully having three babies, and now miscarrying again has been a difficult emotional rollercoaster.

“With my first couple pregnancies, I was still always hopeful, but now all I feel is complete fear and anxiety, to be honest,” Matthews says. “Each pregnancy now, I’m scared the whole time. It’s a continuous stream of thoughts like, ‘I think I felt a cramp. Oh, here comes a period. Oh, is my 5-year-old too heavy to pick up?’ You have all these thoughts and feelings because you want something so bad and you’re trying so hard. After each egg transfer during IVF, I would take three or four pregnancy tests a day. It’s just a lot to handle emotionally.”

Secondary infertility, defined as the inability to become pregnant or to carry a baby to term after previously giving birth to a baby, affects roughly 3 million women in the U.S. and is caused by similar issues as other types of infertility. But those experiencing it can attest that secondary infertility comes with its own emotional challenges brought on in part by the unique stigma surrounding the condition.

Faced with a new, confusing reality

Sunny Jun, MD, a doctor at CCRM Fertility, says she often sees patients experiencing secondary infertility struggle with processing what they’re going though. Having successfully birthed babies in the past can make it confusing to struggle to conceive the second (or third, fourth, or fifth) time around.

Julie Lamb, MD, a reproductive endocrinologist and infertility specialist working with Modern Fertility, explains that many of the reasons people experience secondary fertility overlap with why people experience infertility in general. “It’s possible the sperm wasn’t [viable], the fallopian tubes may be blocked, or there could be an endocrine issue that needs to be checked out,” she says.

But there are some circumstances that make it unique. Dr. Lamb points out that, for one, people are obviously older when they’re having their second (or third, fourth, or fifth) child, and fertility in women tends to decline after the age of 35. Not only does ovarian reserve (the number of eggs a person has) diminish over time, the quality of the eggs aren’t as good either, which Dr. Lamb says can lead to chromosomal abnormalities and higher chances of miscarrying. “Also, if there were complications during delivery from a previous pregnancy, that can sometimes cause scarring in the uterus and that can be associated with secondary infertility,” Dr. Jun adds.

For 43-year-old Elease Bills, who lives in Atlanta, Georgia, her secondary infertility took a very long time to diagnose. Bills got pregnant with her first child naturally when she was on her honeymoon at age 19. It wasn’t until she was 30, newly married to her second husband, that she actively tried to get pregnant again without any success.

After a year of trying, Bills consulted a fertility specialist, who put her on progesterone since her levels were low. “I took it for two months and would get hot flashes, my period was really irregular, and everything was just out of whack,” Bills says. She stuck with it, but still was unable to get pregnant. She was referred to another specialist, who did an X-ray and saw that Bills’ fallopian tubes were blocked, though Bills says the doctors could not figure out why since she did not have endometriosis or any other issue commonly associated with the condition. The next step would have been surgery to unblock her tubes and then IVF, which the specialist recommended given her low progesterone levels. “I didn’t want to do surgery and IVF, so I started researching holistic treatments and tried everything that I came across,” Bills says.

The difficult emotional struggles of secondary infertility

Besides what they’re experiencing physically, Dr. Jun says that secondary infertility comes with its own unique emotional challenges. “I have patients who feel guilty because they have sisters or friends who are going through primary infertility and they already have a child,” she says. But she emphasizes that no one should feel guilty about wanting another child. “Everyone has their own ideal family size. If you have four kids but your ideal family size is six, you’re going to experience emotional difficulty if you struggle to get pregnant with your fifth,” she says.

Dr. Jun also says that friends with good intentions can also unknowingly make the process more confusing. “Often, there are comments like, ‘Don’t worry, you’ll get pregnant again. You were able to in the past.’ Meanwhile, their gynecologist is telling them a different story,” Dr. Jun says. That was the case for Bills, who felt like people dismissed her concerns. “[My husband and I] tried for a year and everyone kept telling me, ‘you’re young, you have one kid already so you know you can get pregnant, it will happen.’ But it didn’t.”

People struggling with secondary infertility are often judged by family, friends, and even strangers, says Dr. Jun. “It can be harder for secondary infertility patients to get the same level of support from family and friends as people experiencing primary infertility,” she says. “Often they get comments, like, ‘Well, you already have a child.'”

“One of my brothers wasn’t really supportive,” Bills recalls. “He asked me, ‘Why do you want another child? You have a teen daughter. Why do you want to start all over again?'”

Matthews says fear of judgement kept her silent about her struggle for a long time. “We actually didn’t tell my husband’s family about the IVF or miscarriages because we didn’t want to feel that judgement,” she says. After recently sharing her experience with a local newspaper, however, she received a mixed bag of feedback. “Some people texted me their support, but then there were also comments like, ‘If she was a good Christian, she would adopt,'” Matthews says. The article touched upon Matthew’s inability to continue her IVF treatment due to COVID-19 and she says one commenter shamed her for trying to get pregnant when people were dying of the virus.

Ultimately, the emotional stress of her secondary infertility was so great that Bills attributes it to breaking up her second marriage. “We kept trying and trying and eventually my marriage just imploded from the stress. It all just became too much for me and for him.”

Finding silver linings

It’s a hard road for secondary infertility patients, but many do find success at pregnancy again. Depending on the cause and the age of the person, there is an estimated 15- to 20-percent pregnancy success rate per treatment cycle; a small 2020 study found pregnancy success rates as high as 46 percent for people treated for uterine scarring caused by a previous C-section. Some can even become pregnant without medical intervention—a year and a half after getting divorced, Bills was surprised to find herself unexpectedly pregnant at age 38 from someone she was seeing casually at the time. It was something else her doctors couldn’t explain, but after trying so desperately to have a second child, it was a welcome surprise. “Many of my friends were super supportive and even threw me a baby shower when I did become pregnant with my second child,” she says.

For people still struggling with all of the difficult emotions surrounding secondary infertility, Dr. Jun recommends they consider therapy and also seek out other women who are experiencing something similar. Resolve.org  and FertilityIQ are two resources patients can use to connect with others who are in a similar circumstance.

Infertility in any capacity is difficult enough, and the added judgement and misguided comments certainly don’t help. Still, despite its obstacles, Matthews isn’t deterred, and hopes to be able to further expand her family later in the year. “I know there’s a lot happening in the world right now, but there are a lot of people who are experiencing secondary infertility and feeling secluded,” she says. “I wanted to share my story so other women don’t feel alone. There’s a lot of pain happening in the world, but that doesn’t take away from the pain you’re experiencing.”