I’ll never forget the look on the doctor’s face as he pulled my test results off the fax machine.
He made me and my husband sit down in his office. Time slowed to a crawl as the doctor drew a diagram of my body and gently explained that the reproductive part of it was dying. There was nothing we could do to fix me, he said. “I’m so sorry. It’s virtually impossible you’ll ever get pregnant again.”
I walked out of the office 30 minutes later, stunned with grief. The bustling street outside was packed with cars and streaming with headlights. The busy drivers hurried on to their next destination, oblivious to how life for the woman on the sidewalk had changed forever.
The term my doctor had used was Premature Ovarian Failure, but I later learned that the more accurate term is Premature Ovarian Insufficiency, or POI. It’s defined as the loss of ovarian function before a woman reaches the age of 40. The average age of diagnosis is 27, but girls in their teens can experience the condition too. In fact, 1 out of every 100 women are eventually affected, making it very likely that each of us knows a woman with POI, or a girl who will grow up to receive the diagnosis.
The symptoms can begin suddenly, or gradually. Periods may become irregular, or start and stop. A young woman may wake up in the night, sweating through her pajamas, or experience a wave of heat rising through her body as she drives home from work. A wife may notice that intimacy has become painful, or that she’s just not as interested in sex as she used to be. A student may realize she’s irritable and struggling to concentrate. These are all normal symptoms of menopause—but with POI, they occur in the bodies of young women.
For me, the first sign came in the form of recurrent ovarian cysts. My cycle and I had always been friends: it came and went quite politely, always punctual and civilized.
Until it wasn’t. As cycle after cycle passed with pain and carnage, I went to my doctor for help.
He told me that my situation was common, and easily fixed with the Pill. The cysts were caused when my body attempted to ovulate, and since the Pill stopped ovulation, there would be no more cysts, he explained.
“But one day I want to get pregnant,” I said. He reassured me that wouldn’t be a problem. No further tests were necessary. I should fill my prescription and move on with my life.
This is a common experience for women, many of whom struggle to get an accurate diagnosis of Premature Ovarian Insufficiency. Many of the symptoms are easily dismissed as stress related, and many doctors automatically reach for the Pill as a useful tool for symptom control. They may not realize that women don’t want a band-aid, but an answer to their questions: what’s going wrong, and why?
Women who are treated by providers familiar with Natural Family Planning or Fertility Awareness-Based Methods (FABMs) have an advantage here.
“The goal for most providers who utilize FABMs to evaluate and treat conditions is to identify the causes of the woman’s symptoms and treat those root causes,” says Dr. Holly Smith, an assistant professor of clinical family medicine at Indiana University School of Medicine and a certified NFP medical consultant. “FABMs allow a woman to track her cycles and changes in her body in a scientifically-validated, very thorough, objective, standardized way… There are several changes on a woman’s [FABM] chart that a medical professional trained in interpreting these charts can identify that indicate underlying abnormalities. Some signs that might indicate Premature Ovarian Insufficiency would be variable or inadequate lengths of the post-ovulatory phase, inability to identify a clear “peak day,” and irregular bleeding or spotting.”
I never filled my prescription for the Pill, but it still took 2 more years, and 3 more doctors, before one of them performed a simple blood test. The results came back: I had high levels of a hormone called Follicle Stimulating Hormone, or FSH.
This hormone is a key player in the delicate call-and-response dance of ovulation. The pituitary gland in a woman’s brain sends out FSH, which tells the ovaries to make follicles grow. Many of these follicles contain human eggs. As the follicles get bigger, they in turn produce hormones which signal that stimulation is adequate and no more FSH is needed. A high FSH level can indicate that there aren’t many eggs left in the ovaries, and the call for ovulation is going out without much response.
My FSH levels were in menopausal territory.
My new doctor wanted me on medication right away. He also offered me the Pill, but when I balked, he willingly put me on hormone replacement therapy instead. I was given estrogen in the form of an adhesive patch. He told me that estrogen is important for bone health, preventing heart disease, and even warding off Alzheimer’s. Most experts agree that for young women with Premature Ovarian Failure who would otherwise miss out on decades of protection from estrogen, the benefits of replacing those missing hormones outweigh the risks.
According to Dr. Smith, this is another stage where FABM practitioners can help in ways many others can’t, or won’t. Their patients receive bio-identical hormones—”meaning they are chemically identical to what a woman’s body makes naturally,” she says.
I decided to fill my prescription. The marketing on the medication packet was clearly geared toward women of a certain age, but I didn’t mind… much.
What I did mind was the infertility. And this is one of the most distressing consequences of Premature Ovarian Insufficiency for many a woman, as her biological clock begins clanging in the middle of her reproductive night instead of closer to dawn.
Premature Ovarian Insufficiency is different from normal menopause, because it’s still possible for women with POI to become pregnant. For reasons that aren’t understood, the reproductive system can sometimes boot back up, even if just for a cycle or two. This means there’s a 5-10% chance a woman with POI will one day have a baby—on her own, with no medical help.
The problem is, scientists don’t know yet how to tell which patients have a chance to get pregnant or how to make the conditions right for it to happen. Most women with POI can’t have a baby through conventional IVF, although they may become pregnant through egg donation or donor embryos. Fertility doctors who practice natural-minded techniques, like NaProTechnology, are often willing to treat patients whose FSH is trending higher—but once menopause has arrived, it is too late.
It’s also still a mystery why Premature Ovarian Insufficiency happens in most cases. Sometimes it occurs after chemotherapy or radiation treatment for cancer. In some cases, it is caused by genetic conditions like Turner’s Syndrome, in which all or part of an X chromosome is missing. Still others experience POI as a side effect of an autoimmune condition. But for most women, and for me, all genetic tests are normal and no cause can be determined.
For young women who have been diagnosed, answers can be elusive and landmines can seem endless. How to tell mom and dad that biological grandparenthood is unlikely? When is the right time to tell a boyfriend? I was married at the time of my diagnosis, but a close friend simply chose to be upfront on her online dating profile. Within 30 days she met her future husband. “He’s interested in me, not my ovaries,” she said.
She wishes, though, that her doctor had been more helpful and that there was an effective treatment for POI.
This year I marked five years since my diagnosis. At my checkup, my doctor sent me for a bone density test, to check if my estrogen regimen was helping to keep osteoporosis at bay. I sat in the waiting room surrounded by elderly women, wondering what they thought of me being there. For the first time, the contrast between their matronly cardigans and my V neck t-shirt seemed funny to me. The test was painless and quick, and the next day I got good news: “You have the bones of a 33-year-old,” the nurse said on her voicemail.
I had to smile. My reproductive system might try to say I’m 50, but the rest of my body (and my spirit) hasn’t gotten the message.