Fertility Centers of Illinois (FCI) continues to bring you the latest information concerning advances in reproductive medicine and the available treatments for your patients. This letter discusses Patients’ Fears about Fertility Treatment from the perspective of patients Ann and David.
Ann and David were a married couple, both 34, who had been trying to start a family for about 18 months without success. They qualified as infertile because they had not achieved a pregnancy in over 12 months of unprotected intercourse. Ann’s gynecologist did some hormone testing without any significant findings and she recommended that the couple consult a fertility specialist because Ann was very anxious and worried that they would be childless. They came to Fertility Centers of Illinois. They had some concerns (let’s just call them fears) that were representative of most fertility patients.
FEAR #1: Something must be wrong and maybe it’s really bad.
This is a fear that begins in advance of a patient’s first visit to Fertility Centers of Illinois. When Ann and David arrived for an initial consultation, they were already anxious, Ann in particular. Women start worrying after a couple of months of not conceiving. Men are more patient, but they become concerned about their wives ’ upset, even if they are not upset themselves. Typically, meeting a specialist is a big step—it signals there is a problem, which is negative; and that they are taking a step to figure it out, which is positive.
It is unusual for a couple to get a firm answer about what is impeding their efforts to build a family in this first visit, but they will get a lot of information about what might be a problem, as well as an overview of diagnostic tests and probabilities of success with different treatment approaches. This first visit is intended to be an exchange of information between physician and patient, followed by some time for the patient to think through what they want to do next. Ann and David left the office with what I call “a virtual suitcase of new anxieties,” as well as feeling that they now had allies in their dream to have a baby.
FEAR #2: Whose fault is this?
Even before diagnostic testing on a couple is completed, both partners worry if it is a problem on their end. David
wondered if the occasions in his single 20’s when he hadn’t used a condom but his partner didn’t get pregnant (lucky at the time!) meant that his sperm didn’t work. Ann worried that her often irregular cycle was the issue and whether the fact that her aunt hit menopause at age 39 meant anything for her. Ideally, Ann and David could talk about this, but it is a hard conversation to have and even harder if the problem is identified as residing in one partner. It is difficult to be completely rational when the stakes are high. Of course, any fertility problem of wife or husband is a couple of problems, but what if they can’t see it that way, and it becomes a source of resentment for the fertile partner and a source of guilt for the partner with the fertility obstacle?
Fortunately, when Ann and David found out that their issue was likely an ovulatory dysfunction, David was able to say, “Look, we’re in this together. I married you, not your ability to ovulate on time.” This was very comforting to Ann, although she still saw herself as the one to “blame.” Perhaps the only thing worse than getting a diagnosis is getting no diagnosis and having your problem classified as “unexplained.” Something is getting in the way but we don’t have the scientific tools to uncover every impediment. Being “unexplained” drives fertility patients crazy. It is essentially human for people to know why something is happening and when it is unknown that adds another dimension to what all fertility patients describe as feeling out of control.
FEAR #3: Can This Problem Be Fixed? (And what’s It Going to Cost?)
Ann and David came back to Fertility Centers of Illinois for diagnostic feedback and to hear in more detail how their problem could be addressed—medications and monitoring to normalize Ann’s cycle and pinpoint when ovulation would occur, with timed intercourse; or all of that, but also with insemination with David’s sperm on the optimal day; or in vitro fertilization (IVF), using more medications and more monitoring but leading up to an egg retrieval, insemination of eggs in the lab, and an embryo transfer. IVF would also introduce the possible creation of multiple embryos, the possibility of doing genetic testing of the embryos to detect abnormalities, and concerns about the final fate of any embryos that would be frozen and stored in the IVF lab.
David and Ann had pretty good insurance for fertility treatment through Ann’s job, and they were pleased to find that they were benefitting from living in Illinois, a “mandated” state where infertility treatment is a covered expense. However, there would still be co-pays, out-of-pocket expenses for anything not covered (genetic testing of embryos, freezing cost), and maybe a large amount of money if they needed expensive fertility medications after their drug maximum was reached.
For many patients, Illinois law doesn’t apply. Employers who are “self-insured” (usually large companies,) religious employers (e.g., a Catholic hospital,) and businesses with less than 25 employees do not have to follow the state law regarding treatment and patients have “diagnostic only” coverage. Self-employed patients may have no coverage at all, although that has improved greatly with the impact of the Affordable Care Act. Infertility treatment may be simply unaffordable for many people, who might borrow from family, take out a second mortgage, or apply for fertility scholarships. Or, forego treatment.
How many of our patients take home a baby? That is the plan, for all the patients who come to us, but some people do not arrive at the dream we share with them. The live birth outcomes we have the best information about are reported to the Society for Assisted Reproductive Technology (www.sart.org.) They are usually two years behind, to allow time for reporting of live births after treatment. Putting all FCI’s treatment approaches together, our best estimate is 70% of our patients achieve parenthood with our help. Sometimes, a former patient will call to tell us they had a baby through, of all things, sex! As our founding physician, Dr. Aaron Lifchez, once said, “Sometimes our patients get pregnant despite our best efforts.”
FEAR #4: How will we handle the emotional and social struggles of treatment?
Ann and David started out with a solid marital relationship and were able to work, most of the time, as a team. It was not easy, and they ran into many ups and downs during their time with FCI. The costs of fertility treatment are not just financial.
Impact on work—Ann was a 4th-grade teacher in a Chicago suburb. Even though FCI offices open very early in the morning, there were times when she had to be late and have someone take over her class for a short time. She was lucky that her principal was very sympathetic and made it work for Ann. A downside was that Ann felt her fertility journey was common knowledge in the staff room. She said, “In an elementary school, there is no such thing as reproductive privacy.” Other female patients have a hostile boss or fear they won’t be considered for advancement, or value their privacy and want to keep their treatment a secret. That becomes nearly impossible if the treatment is IVF, with all the monitoring appointments and days off needed for egg retrieval and embryo transfer. David had a much easier time, as a sales representative who had a flexible schedule.
Impact on relationships—this might be the hardest area to navigate, at least as hard as dealing with infertility in the first place. Despite their strong marriage, Ann and David had some difficult times as a couple. When David’s younger brother’s wife was expecting a baby, Ann had a very difficult time with that and did not want to attend the baby shower. This is quite normal for a fertility patient, but David felt hurt that his wife couldn’t “suck it up” and just go and put on a fake smile. They worked out a compromise. Ann went to the shower, delivered a gift, and stayed for lunch. As gifts were about to be opened, Ann left, pleading a migraine.
Both David and Ann agreed that attending family gatherings was often not pleasant when they were going through treatment. They had decided to share the basics of their journey but dreaded all the intrusive questions and unwelcome advice. One Christmas, a very child-oriented holiday in their families, they opted to take a vacation in Florida. The family was aghast, but Ann and David hung tough and were glad they did. They needed to take care of themselves as a couple.
Fertility patients need to be careful about which friends they go to for support. Men tend to be less disappointed because they are more private and don’t share as much. David‘s best college friend was a good sounding board for David and cheered him on. Ann learned, to her dismay, that most of her girlfriends were not very sensitive when it came to her fertility journey. “They just don’t get it,” Ann said. She found her best support came from her single sister and from a Facebook group she joined.
Impact on self-image and emotional health—Fertility patients are vulnerable to feeling somehow defective, or “less than.” Ann struggled with the way her body didn’t work correctly. Was she an imperfect woman, incomplete if she couldn’t have a baby? David had normal sperm parameters, but he commented that he would have had a tough time if his fertility was compromised. When it is the male with the problem, it may throw them into a profound personal crisis. If someone finds out they have no sperm, for example, that is shocking news that takes time to adjust to.
Patients sometimes feel that they have met their “dark side.” Ann asked, “Am I really a bad person because I am so envious of every pregnant woman I see at the mall?” This is very much a temporary state of being, but it feels awful.
It is very common for our patients to suffer from high levels of anxiety and/or depression. They worry that their stress is a factor in their infertility or if they can keep going in treatment feeling a bad as they do. Women seem to suffer more, but their male partners suffer, too, often in silence. They want to be strong for their wife, even when they are frustrated that they can’t fix this problem and don’t know what to say. As David put it, “Infertility is not for sissies.”
FEAR #5: What if nothing works?
Patients spend some time dwelling on this thought fairly early in the treatment process. Women, in particular, think ahead and mentally rehearse all possible outcomes, often baffling their husbands, who are more willing to just see what happens. It is hard to contemplate the possibility that all of the time, all the money, all the disruptions to their life, and all the emotional capital they have expended might not result in the child they wish for so fervently. Sometimes, when patients are able to embrace this lack of any real control over the outcome of treatment, they are liberated from some of their emotional burdens and can look at their lives beyond infertility. For some, that might involve pursuing adoption; for others, it might be accepting a life that does not involve directly parenting children.
COUNTERING THE FEARS: What does Fertility Centers of Illinois offer?
Fertility Centers of Illinois understands that our patients are not only on a medical journey and we offer all our patients support and counsel for their emotional and psychological well-being. We have three behavioral health specialists on staff who have expertise in the challenges of fertility treatment and who can offer help with decision-making, pregnancy loss, couple conflicts, and managing anxiety and depression. Our behavioral health staff can see patients at four of our office locations and can call a patient in a crisis. We offer a complimentary first meeting for support, and an additional complimentary meeting for patients thinking of moving to IVF. If it makes more sense, we will help patients find a mental health provider in their local community. Our social worker offers three on-going support groups—general infertility, single women pursuing parenthood, and patients who have had a pregnancy loss. We work closely with Pulling Down the Moon, our holistic partner who offers in-person classes and webinars on yoga, nutrition, acupuncture, and other approaches to helping make the fertility journey less difficult and more manageable. We will help our patients long after they have left, but now want advice about talking to their children about their donor-assisted conception or are seeking help about what to do with their frozen embryos.
ANN AND DAVID—the end of their story.
After two years and two months with FCI, they succeeded, having a successful pregnancy after an IVF cycle. They have frozen embryos so we expect to see them back to try for a second child. The other day, Ann, who is on maternity leave, came in to visit with baby daughter in her stroller. These “baby visits” are very special to FCI staff and remind us why we are here.