Patti Gellman rode a physical and emotional roller coaster for two years trying to get pregnant for the first time. What she and her husband, Alex, thought would be a simple act of love to produce a child turned into a highly medicalized journey of poking, prodding, discomfort and -- perhaps the hardest part -- month after month of heartache when nothing seemed to work. Their turmoil finally paid off in 1993, however, when Gellman delivered healthy twin boys.
"I didn't think anyone would be able to talk me into going through that again, especially since I had two wonderful, healthy sons," says Gellman, who lives in Ambler, Pa. But she had a change of heart last winter and, after going through another couple of rounds of in vitro fertilization, delivered another baby boy five months ago.
As Gellman can attest, the desire to have children can be so strong that infertile couples often will go to great physical, emotional and financial lengths to get pregnant. The good news is that about 80% of these couples will eventually succeed, typically with the help of a reproductive endocrinologist, and the vast majority won't need to undergo the more advanced and costly technologies, like in vitro fertilization. In addition, improvements in lab practices have increased the odds that these more sophisticated methods will work, while at the same time reducing the risk of multiple births.
"The problem is that infertility affects every aspect of a woman's life," says Alice Domar, a health psychologist and director of the Mind/Body Program for Infertility at Beth Israel Deaconess Medical Center, Harvard Medical School. "It affects their relationship with their husbands because men and women don't respond to infertility in the same way. It affects their sex life because they're told when they can and can't have intercourse. It affects relationships with friends and family because everyone else seems to be getting pregnant effortlessly. It affects jobs because they have to miss tons of time for doctor's appointments and procedures. It can send them into a spiritual crisis. They feel cruddy because they're going through all these invasive tests and procedures which hurt. And it costs a ton of money."
If you're among the estimated 10% of reproductive-age couples who are infertile -- defined as being unable to conceive a child for at least a year without medical assistance -- count your blessings for these advancements in science. But also be prepared to enter a maze filled with uncertainty, disappointment and anxiety. Fortunately, arming yourself with as much information about infertility as you can from the start, forging a support network of women who've been there, and developing a realistic outlook can help, experts say. Here are some thoughts from the trenches -- from veterans and fertility specialists alike -- that might make that journey easier.
Beyond the Cookie Cutter
When Annette Wax of Wheeling, Ill., had trouble conceiving her second baby at 29 and experienced side effects from the first fertility drug she tried, her OB-Gyn sent her to a well-known fertility specialist who also was covered by her health insurance. Yet from the first visit with the doctor, who outlined a regimented course of treatment, she felt like she had been propelled into a cookie-cutter protocol in which her own needs and desires were ignored.
"It was like a factory -- I felt like a nobody among 30 people in the waiting room," recalls Wax. "They told me that if one thing didn't work, they'd try the next and the next. ... I felt like a guinea pig."
Doctors say that feeling comfortable with a program is just as important as its statistics and success rates. "A fertility program needs to give personal attention -- otherwise it'll wreak havoc with you emotionally," cautions Dr. Sherman Silber, medical director of the Fertility Center of St. Louis and author of "How to Get Pregnant With the New Technology." "The doctor probably won't have all that time to provide, but there should be counseling personnel to hold your hand every day."
That's why word of mouth is among the best ways to find a program you'll be comfortable with, advises Dr. Richard Rawlins, director of the IVF/ART Laboratories at Rush Medical Center in Chicago. "Find a support group for infertile couples, like RESOLVE, and talk to those women because they've been through it. Ask them where they were well taken care of and where they had a good doctor-patient interaction." RESOLVE is an infertility support, education and advocacy organization based in Somerville, Mass., with chapters nationwide.
Infertility programs typically start with an exam and tests to explore three factors that could contribute to problems conceiving -- sperm, ovulation, and structural abnormalities in the fallopian tubes or uterus. Depending on the diagnosis and the age of the woman, treatments might involve fertility drugs to correct hormonal imbalances, intrauterine insemination, surgery or experimental assisted-reproduction techniques (ART) such as in vitro fertilization, in which the sperm and egg are fertilized in a lab.
Although diagnostic tests can sometimes be dragged out for as long as 18 months, Daniel Kenigsberg, co-director of Long Island IVF in Port Jefferson, N.Y., advises finding a specialist who will get the testing done in about six weeks and who includes successive options if one course of action fails. He also advises that couples truly understand their chances of conception every month.
"Even if you were to restore a couple's fertility to normal, they'd still only be getting pregnant at a rate of about 20% per month. If people don't understand that basic premise, infertility can become especially stressful because somebody will get a fertility drug or insemination for one month and think it's gotta work."
Couples may be limited to certain programs or treatments by their insurers, and in states with mandated coverage patients are often referred more quickly to in vitro fertilization than they are elsewhere. But experts encourage arguing with insurers if need be. "I think that insurers for the most part want the patients pregnant in less tries, too, but sometimes they're not looking at the success rates as closely as the patients are," says Dr. Michael Zinaman, director of reproductive endocrinology at Loyola University Medical Center in Chicago.
The Numbers Game
Success rates for in vitro fertilization, which average about 23% per attempt by most recent statistics issued by the Centers for Disease Control and Prevention and cost an average of $10,000, are important to compare, of course. That's true now more than ever since some clinics have jumped significantly ahead of others, with some success rates as high as 50% for women 35 and under due to improvements in the procedures and lab conditions, says Dr. Zinaman.
But Dr. Silber suggests that couples also consider a program's cancellation rates, which can make its success rates appear higher than they otherwise might. Programs in high-population areas with long waiting lists often cancel in vitro procedures for women with smaller egg harvests because the pregnancy rate will be lower. "Their overall business plan may be to cancel 20% of their cycles -- that way their overall pregnancy rate will appear 20% higher." He recommends that cancellation rates be no higher than 5%.
Other techniques for artificially boosting success rates, says Dr. Kenigsberg, are to accept patients with the best chances of getting pregnant or to report only a portion of a clinic's populations, since national statistics are unaudited. Sometimes clinics also might hide the more difficult cases in a "research category" that isn't included in the reportable data, adds Dr. Silber.
A limited but growing number of infertility clinics are distinguishing themselves with the use of a promising method of culturing fertilized eggs called "blastocyst transfer." One of the technique's major advantages is the reduced chance of multiple births -- a concern for many infertile couples seeking reproductive help. By culturing fertilized eggs for five or six days instead of two or three, doctors can return fewer embryos to a woman's uterus in hopes they'll continue to develop. The downside is that leaving the embryos in an artificial environment longer may reduce the chances of a viable embryo for transfer.
The Power of Hot Fudge
When Gellman, the Pennsylvania mother of twins, was trying to get pregnant for a second time, even finding comfort in her two 5-year-olds wasn't enough to offset the grief she felt every time the home pregnancy test turned out negative. "You eat, drink and sleep this stuff," she says, "and when it doesn't work, you feel the loss of this child you haven't conceived, you feel the loss of all the time you spent pursuing it ... you feel many losses.
"Finding out I wasn't pregnant always threw me into a funk for two or three days. I wouldn't want to get out of bed in the morning. Finally I'd drag myself back up, and the only thing that kept me going was knowing I could try again in a month or so." She also knew from her volunteer work at RESOLVE that she wasn't alone. "I did occasionally come across the person who could say, 'Whatever will be, will be,' but for every one of those there were another 10 who cried their hearts out at support group meetings and who fell apart in your arms."
Often just sharing those experiences can help, Gellman says. "It was so important to know there was somebody else who felt exactly how I felt, and it was great for the husbands, too, because they saw that their wives weren't so unusual and abnormal, or that they weren't going crazy."
But Domar says that depression among infertile women is just as severe as the depression experienced by those with life-threatening diseases such as cancer, heart disease and AIDS. That can make positive, or even realistic, mindsets hard to drum up, she says. "Infertility is a brutal process, and unlike any other medical condition, the patient is blamed for it," she says. "Every infertility patient in the world has been told, 'Just relax, and you'll get pregnant.' Would you say to a cancer patient to just relax and the cancer will go away?"
So don't be surprised if all the platitudes and rationalizations -- such as try focusing on other aspects of your life -- don't take the edge off, no matter how true or well intentioned. "If you tell an infertile woman to have a life, she'll throw things at you," Domar says. "It's an incredibly stressful process. The problem is that, I believe, the depression that results from the experience may kick in and contribute to the infertility."
At the Mind/Body Center for Women's Health, Domar teaches a variety of physical and cognitive skills women can use while they're going through infertility treatments. Stress-reduction techniques include meditation, yoga, progressive muscle relaxation, nutrition and keeping a journal to express emotion. Or women might do things to nurture or indulge themselves, like taking a mental-health day, having a bubble bath, watching a "chick movie" or eating a hot fudge sundae.
"I think women pay a very high price with some of these infertility treatments -- it can be very demoralizing -- and perhaps in our zeal to make sure they become parents, we've ignored the possible downside," says Penny Simkin, a childbirth educator, doula and birth counselor in Seattle. She says women need more professional support, not only during treatments but after they've conceived. In the meantime, it's fortunate that most couples still have a pot of gold waiting at the other end.