When I was 12 years old, I spent my summer break at Camp Whippoorwill in Fairview, Tennessee, zip-lining into a lake, crocheting friendship bracelets, and feeding an enormous pig named Otis. One day, while using the bathroom before archery, I noticed a thick, brown substance in the crotch of my Limited Too panties. I sat there trying to recall when I had pooped my pants. I mean, shitting yourself is pretty memorable, right?
After the appearance of more “poop” and a call to my mom, I learned I started my period. It’s kept me company on a monthly basis since that day (though I occasionally have trouble discerning if it’s blood or poop — some things never change). Four years after that summer at Whippoorwill, I started birth control pills to help with acne. Over the course of the next decade, I had different sex partners and experimented with other forms of contraception. Now that I’m almost 30, I’m beginning to think about fertility and when I’d like to start a family.
Though everyone’s reproductive life cycle is unique, many report a similar trajectory. But here’s the thing: When I was dealing with zits, some teenagers may have been dealing with menopause symptoms — yes, menopause. The American Pregnancy Association reports that primary ovarian insufficiency (POI) impacts one in every 1,000 women between the ages of 15 and 29 and one in every 100 women between the ages of 30 and 39.
POI occurs when a woman’s ovaries cease functioning before the age of 40. “If a young person has POI, they’re likely thinking about dating or sex,” says Dr. Leah Millheiser an OB-GYN and Clinical Assistant Professor at Stanford University. “But they also have to think about explaining to a partner that they’re going through menopause. They’re dealing with issues most individuals their age don’t have to think about until they’re in their 50s.”
If you’ve never heard of POI, you’re not alone. Unfortunately, our culture doesn’t always do a good job of talking about serious women’s health issues. To get the conversation started and learn more, we interviewed women’s health experts and reviewed the latest research on POI.
What’s the medical definition of POI?
“Primary Ovarian Insufficiency is the loss of eggs in the ovaries or abnormal function of the ovaries, so that periods and the entire menstrual cycle cease for large stretches of time or permanently before the age of 40,” explains Dr. Shaun Samples, an OB-GYN in Nashville, TN. “It’s more common to experience POI in one’s 30s than during one’s 20s or adolescent years.”
Here’s how this works: We’re born with approximately one million eggs. During our cycle, several ovarian follicles (where the eggs live) develop. During ovulation, just one of these follicles releases an egg. From there, the egg either gets fertilized by sperm (cue pregnancy) or flushed out during menstruation.
What about those other developed follicles? They die off. So, you lose follicles as well as the eggs inside them each month. With POI, there’s an insufficient (hence the disorder’s name) amount of follicles to develop and eventually release an egg. It’s therefore common to experience an absent or infrequent period and even infertility.
If you’ve ever heard of Premature Ovarian Failure (POF), it refers to the same condition as POI. However, POI is now the preferred and accepted term. According to Dr. Millheiser, this is because spontaneous ovulation and pregnancy (without any medical intervention) can occur for those with POI, but rarely. The ovaries aren’t technically a “failure,” but are rather “insufficient.” (Though we have to admit neither term is particularly sensitive.) Dr. Millheiser adds that this is also why POI is different from premature menopause and menopause, which indicate an end to fertility and ovarian function.
Do hormones play a role?
You know it. Dr. James Wang, a Naturopathic Doctor (ND), adds that with POI, “A patient’s ovaries produce insufficient amount of estradiol, a hormone that helps follicles develop and eggs release.” (Estradiol is a naturally-occurring type of estrogen.) While estrogen levels tend to be low for those with POI, follicle-stimulating hormone (FSH) levels are usually high, according to the Mayo Clinic. As you may have guessed, FSH stimulates the growth of ovarian follicles. While you might expect FSH levels to be low for POI, think of it this way: The body is having to work extremely hard to stimulate follicles (though with little luck), which results in high levels of FSH.
The Mayo Clinic adds that high levels of prolactin — the hormone that encourages breast milk production — are also typical in those with POI. Irregular or absent menstruation and issues with ovulation are often associated with high prolactin levels. This is similar to new mothers who are breastfeeding, which can cause similar menopause-like symptoms.
To summarize: Not only is there a lack of follicles to develop and release an egg, but there’s also imbalanced levels of fuel (AKA hormones) to help the ovaries do so.
Let’s talk symptoms
POI symptoms largely resemble those associated with perimenopause and menopause. “Those with POI can experience hot flashes, night sweats, vaginal dryness, decreased libido, painful intercourse, and sleep interruptions,” says Dr. Samples. “Menstrual cycles become irregular and for most, cease completely.” Dr. Samples emphasizes that emotional side effects like grief, anxiety, and depression often accompany POI.
In terms of fertility and conception, five to 10 percent of women may achieve a spontaneous pregnancy since it’s possible to sporadically ovulate with POI, according to Dr. Samples. But for the majority of her patients, she usually refers them to a reproductive endocrinologist to discuss options like donor egg and vitro fertilization (IVF) treatment.
While the aforementioned hormones are to blame for these symptoms, what causes the hormonal imbalance and lack of follicles to begin with? Both Dr. Samples and Dr. Wang say that while the cause of most POI cases is unknown, chromosomal abnormalities (when a woman is born with only one normal X chromosome and an altered second X chromosome, for example), autoimmune disorders, and chemotherapy or other types of radiation exposure have been identified as causes of POI.
For example, this 2016 study published in the Journal of Clinical and Diagnostic Research states that most cases of POI are are idiopathic (a fancy word for “unknown”) and account for 60-80 percent of total cases. The study goes on to say that POI is reported to be associated with autoimmune diseases in 20-30 percent of cases. “Most common are thyroid disorders, which are seen in 30-40 percent of cases of POI,” write the authors. “Adrenal autoimmunity is the second most common autoimmune disease associated with POI.” This is why, as the study notes, it’s recommended that those presenting symptoms of POI get tested for thyroid, adrenal, and ovarian autoantibodies — more on this in a bit.
While more people are surviving cancer thanks to improvement and innovation in treatment, some survivors are faced with the serious long-term side effect of POI due to chemotherapy. The authors of a 2005 clinical study write, “Different chemotherapy agents, alkylating cytotoxics in particular, have the potential to cause progressive and irreversible damage to the ovaries. The result of this damage is a state of premature ovarian failure.”
The American College of Gynecologists and Obstetricians (ACOG) notes that the age a patient receives chemotherapy, the types of cancer medications taken, and the number of doses have an effect on the possibility of POI. If you’re struggling with cancer and are worried about POI, talk with your medical provider about treatment options that may lower your risk of POI.
What’s it like to get diagnosed with POI?
ACOG explains that diagnosis of POI is often determined by the following criteria and tests, though there’s no consensus in the medical community:
- At least three consecutive months of menstrual irregularity
- Estradiol test
- FSH test
- Prolactin and thyroid functioning test
“POI is a very sensitive diagnosis for a patient and their family,” says Dr. Samples, who relies on the above criteria and tests in her office to diagnose POI. She adds there is also research pointing to the potential of using anti mullerian hormone (AMH) levels to aid diagnosis. AMH levels indicate ovarian reserve (the quantity of eggs in the ovaries), therefore those with POI tend to have lower AMH levels. However, ACOG notes that research is still being conducted to evaluate AMH’s value in POI diagnosis.
If you’re concerned you may have POI, before you visit your provider, make sure you’re not pregnant. If you’re taking birth control pills, remember that skipping the placebo pills can also cause your period to cease. (Whether or not you're on birth control, Modern Fertility always tests AMH — and thyroid-stimulating hormone, or TSH — levels. For anyone who's not on birth control, we also test estradiol and FSH.)
Life with POI
According to Dr. Samples, there is not a cure for POI. Despite this, there are ways to manage symptoms. Since estrogen levels are unusually low, Dr. Samples advises patients begin hormone treatment to avoid bone loss and alleviate other symptoms like vaginal dryness. “Most gynecologists recommend hormone therapy until natural menopause,” she says. “There is an increased risk of cardiovascular disease, therefore quitting tobacco use, measuring blood pressure, getting exercise, and eating healthfully are important.” Lastly, she explains that patients with POI are at an increased risk of hypothyroidism and adrenal insufficiency. Therefore, it’s recommended those with POI get tested and screened every one to two years.
Because of the difficult emotional side effects of POI, Dr. Samples strongly recommends patients to seek counseling from a mental health expert who specializes in reproductive issues. Dr. Wang adds, “Once you have a diagnosis, finding a support group — even if it's a group for menopausal women — is something that my patients have found to be rewarding and relevant. Lastly, it's important not to label yourself as ‘broken’ or ‘less.’ There should be no shame.”
Before learning about POI from Dr. Samples and Dr. Wang, I assumed most individuals’ reproductive journey looked somewhat similar to mine. You know, like one day noticing armpit hair when applying Teen Spirit, starting your period, getting boobs, perhaps going on birth control, and having a super awkward first sexual encounter. However, this isn’t the case for everyone. As Dr. Wang says, there should be no shame. But in order for those with POI to feel less alone, we must start shedding light on the issue. It starts with knowledge and dialogue.