Erik and Melissa Jones were optimistic and grateful. After thinking they’d have to go through the long and expensive process of in vitro fertilization, their infertility problem was attributed to a seminal blockage in Erik’s testicles, which could be cleared with a simple procedure that would be covered by insurance.
And if the issue was fixed, it could give them a chance to conceive naturally.
“It was kind of a weight off because [the urologist] seemed really optimistic,” Melissa said. “We were really excited.”
But after his outpatient procedure, Erik started experiencing severe abdominal pain. He later became constipated, and after two weeks, the pain was so intense that he wondered if he was about to die.
Listen to Episode 9 of ‘IVFML Becoming Family’ below.
Egg retrievals, testicular surgeries and other infertility-related procedures are extremely safe, and deaths and near-deaths are exceedingly rare.
That’s why Melissa was in shock as Erik’s health kept deteriorating. First, he was diagnosed with a perforated bowel caused by the surgery, which had allowed fecal matter to leak into his abdomen for weeks. The toxins caused an infection to set in. That triggered sepsis, which is when the body over-responds to a threat, putting organs at risk of failure.
Once Erik was stabilized, doctors performed surgery to reroute his intestine to a colostomy bag attached to the outside of his abdomen. The colostomy bag would collect his waste for a year to allow his large intestine to heal from the perforation.
All of Erik’s complications weighed heavily on Melissa and filled her with immense guilt.
“I just start bawling because I’m thinking, okay my husband just did this procedure, mostly because I want to have children,” Melissa recalled. “And with everything he’s already been through, now he’s going to be in surgery that he may not come out of.”
Erik did come out of his surgery, and after a year, his colostomy reversal surgery was a success.
Immediately after his surgery, it was difficult for the couple to imagine trying any other medical interventions to try to conceive. Still, after time passed, Erik consented to more treatment. This time it was IVF, and it was Melissa who had to deal with all the appointments and procedures.
After several unsuccessful cycles, they finally made the decision to stop trying.
The Isolating Pain Of Involuntary Childlessness
While experiencing infertility itself doesn’t have long-term psychological consequences, involuntary childlessness does, said infertility sociologist Larry Greil of Alfred University.
“The people who are distressed tend to be the people who wanted children but never had them,” said Greil, explaining his 2003 study on the issue.
Whether it be through adoption, giving birth or some other means, many infertile people do end up having children. But while there is research on infertile women who end up giving birth (Greil estimates it’s “well below 50 percent”), and research on infertile families who adopt children, there is no comprehensive estimate of how many infertile people become parents in the end.
“Strange as it may seem, no one has actually come up with a conclusive answer to the question: What percentage of infertile couples actually end up with a child?” Greil said. “Media reports give the impression that everyone comes out with a baby, and that impression is false.”
Erik and Melissa suspected that their story, which ended with the failure of infertility treatment, was more common than success stories. Yet they couldn’t find any support from others who had gone through something similar. Instead, they encountered hostility from infertile people for deciding to stop treatment, and disbelief and a lack of support from some friends or family who wanted them to “just keep trying,” despite Erik’s near death experience.
“Even with what we’ve been through, there’s still people who have said, ‘Don’t quit ― why are you quitting?’” Melissa said.
To create a support community for themselves and people like them, Erik and Melissa created a podcast called “Living Childfree With Erik And Melissa,” and are hoping that other people in similar situations will reach out about their own experiences.
“There’s still sadness. We still feel like outcasts. We haven’t really figured out that great path,” Erik said.
“But for me, not to get too philosophical, but I like the idea of trying to figure it out,” he continued. “Maybe Melissa and I won’t figure it out, but maybe somebody coming behind us will.”
“IVFML Becoming Family” is produced and edited by Anna Almendrala, Simon Ganz, Nick Offenberg and Sara Patterson. Send us an email at IVFML@huffpost.com.
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Before You Go
