As soon as Frederica Nzamurambaho started having her period, she realized something was very wrong. It came every three months, but the irregularity wasn’t what bothered the then-11-year-old. What did worry her were the intense cramps, nausea, and backaches that often accompanied her cycles.
“I always thought it was a bit suspicious; I mean, you’re not supposed to go through that much pain,” Nzamurambaho, 25, said. “Regular pain is okay, but being indisposed for two days—that’s a bit crazy.”
But everyone around Nzamurambaho reassured her that painful periods were normal for women. So, she brushed it off, though not entirely convinced. “I’ve always been the type to be prepared with my painkillers, water, and knowing where the bathroom is,” she explained.
Even the facial hair that appeared during her adolescence didn’t raise a red flag for Nzamurambaho. “It’s always been there, always a part of who I was since I was around 13-ish,” she said. “I usually shave or wax it. Sometimes, I’m just like, ‘I can’t be bothered.’”
Then, towards the end of last year, her period came and stayed for five months. It was October 2023; three months prior in July, her painful periods had stopped entirely. August passed without a period, as did September. Around mid-October, her period returned and wouldn’t stop. This time, she was certain she needed to seek medical help. The diagnosis confirmed what the 25-year-old had suspected for a while: polycystic ovary syndrome (PCOS), a hormonal disorder that affects women’s fertility and can potentially cause various health issues.
Nzamurambaho began suspecting she had the condition four years ago during an especially painful episode of period cramps. Her sister encouraged her to investigate. A brief check on the NHS website unveiled a possible explanation for her symptoms: elevated levels of androgens, commonly known as male sex hormones. Hyperandrogenism can also manifest as severe acne and hirsutism—excessive body hair growth in patterns more typical of male puberty than female puberty. These were all symptoms Nzamurambaho had been grappling with.
The gynecologist who diagnosed her in February prescribed pills to regulate her hormones, which she took for six days. But it proved ineffective. In fact, she noted, “it became worse because I started bleeding heavier.” Nzamurambaho returned to the same OB-GYN, and finally, after being prescribed birth control pills, the incessant bleeding stopped almost immediately. Two weeks in, many of her other symptoms — tender breasts, low energy, and intense cravings, especially for sweets — which had plagued her throughout the five-month period of constant bleeding, eased.
Why wait until now to visit the hospital? “You know, it’s one of those things where, as long as my quality of life is not seriously diminished, we just keep it moving,” she answered ruefully, explaining that she somehow convinced herself that it was a kind of “payback for all those months she skipped her period.” Her utter dislike for hospitals played a role, too.
As many as 15 percent of women of childbearing age are affected by PCOS, making it the most prevalent hormonal disorder among this demographic. That’s why we’ve curated this guide by examining current literature and integrating expertise from Michael Mugaba, M.D., a consultant Obstetrician and Gynaecologist at King Faisal Hospital Rwanda (KFHR).
On symptoms and reaching an accurate diagnosis
PCOS may be suspected if you experience abnormalities in your menstrual cycle. Issues such as excessively heavy, painful, or irregular periods can overlap to be indicative of PCOS, with the latter two particularly important symptoms to watch for. Periods may occur twice a month, be infrequent (with intervals greater than 35 days apart), or even disappear for several months at a stretch.
Periods associated with PCOS can vary, ranging from light to heavy enough to cause anemia. In Nzamurambo’s case, where she faced heavy and incessant bleeding, she had been previously diagnosed with anemia and was already taking supplements for it. “I guess that’s probably why the heavy bleeding didn’t distract me enough to look into it,” she justified.
Other symptoms of PCOS include multiple ovarian cysts on an ultrasound, obesity (caused by metabolic syndrome and insulin resistance), acne resistant to treatment, or increased growth of facial or body hair. But not every woman with PCOS exhibits these symptoms. Just as some young women with multiple ovarian cysts may not have PCOS, some women with metabolic syndrome and insulin resistance can be thin.
“PCOS is syndromic, but it is a complex condition that varies from person to person,” explained Dr. Mugaba. “For example, an adult woman could weigh 60 kg and be very slender but have a cycle that is suggestive of PCOS. Then you’ll do an ultrasound to look at her ovaries, and there, you’ll see 12 or more cysts, which is usually a strong indication of PCOS.”
If a doctor suspects a woman may have PCOS after taking a medical history and conducting a clinical exam, they will typically order blood tests to check for specific hormone levels, assessing for hyperandrogenism. Additionally, an ultrasonogram of the ovaries may be performed to aid in the diagnosis.
On PCOS and related health conditions
PCOS is among the leading causes of female infertility, characterized by irregular or infrequent ovulation. When ovulation is irregular, it becomes difficult to time intercourse for the most fertile period.
There’s also an aspect of sexual dysfunction in PCOS, which Dr. Mugaba notes is not often discussed. “But we see it in couples. You have a couple that is trying to conceive. First of all, they can’t because she’s not ovulating properly. Consequently, this infertility component begins to take a toll on her emotionally. And because of this, she may also experience a reduced desire to engage in sexual activity.”
Medical conditions associated with hormonal imbalances can also contribute to increased heath-related risks. PCOS, for instance, has been correlated with a higher risk of uterine cancer. This is attributed to the tendency of women with PCOS to skip periods, leading to a buildup of uterine tissue that may progress to endometrial cancer.
Up to 88 percent of women with PCOS are obese, as the condition is linked to a dysfunctional metabolism. This makes it easier for women with PCOS to gain weight and more difficult for them to lose weight.
Take Nzamurambaho. “When I tell you there is no diet on this planet that I haven’t tried. I’ve tried keto, I’ve tried paleo, I’ve tried intermittent fasting—any diet you can think of, I’ve tried it,” she laughed humorlessly. In her younger years, her mother even eliminated all oily food from her diet, sticking to boiled food. However, when no major change registered, they eventually gave up on those efforts.
Because they are usually on the heavier side, the likelihood of developing diabetes, high blood pressure, and heart disease may increase in women with PCOS. This association is often linked to insulin resistance, a common feature of PCOS. Excessive insulin promotes fat storage, contributing to weight gain and obesity. Moreover, obesity can further heighten the risks of pregnancy problems. If you are overweight, your physician may recommend weight loss before conceiving to mitigate these risks.
Dr. Mugaba added that hormonal imbalances in PCOS may lead to mood swings and symptoms of depression. Changes in the body associated with PCOS, such as weight gain, hair loss or excess facial hair, acne, and oily skin, can impact emotional well-being. “There’s too much you have to take care of. Self-confidence plays a big role, you know,” he explained. “Then there are people trying to start families, but they’re having trouble having babies. That’s where a lot of mental health problems come from.”
On possible treatment schemes
There is no cure for PCOS. Treatment approaches are tailored to individual symptoms, risk factors for diabetes and heart disease, and reproductive plans, said Dr. Mugaba. If a woman is uncertain about having children or not ready for pregnancy, birth control pills are often considered as the first line of treatment.
“Usually, we use oral combined pills,” he explained. “So we have progesterone pills and then we have progesterone and estrogen. Those are ideal for PCOS. What do they do? The pills decrease androgen levels in the blood, improving acne and excess facial hair growth.”
If you have PCOS and desire to conceive, your doctor may suggest treatments to induce ovulation. “It could be oral medication or an injectable drug,” Dr. Mugaba continued, “to improve your cycle through ovulation induction.”
For those who are overweight, shedding just five percent of your overall body weight can lead to a reduction in androgen levels and improve fertility. Incorporating regular exercise and adopting a well-balanced diet can also help the body utilize insulin more effectively, reducing the risk of diabetes and other health risks associated with PCOS.
Dr. Mugaba recommends a stepwise approach for those prone to weight gain, starting with a single change, such as cutting out sugary drinks, and potentially progressing to a low-carbohydrate diet.
Women with PCOS are at a higher risk of developing depression and anxiety disorders as the doctor earlier mentioned. Seeking support from a mental health counselor can be helpful.
On why so many people go undiagnosed and what needs to change
Worldwide, PCOS affects an estimated 8–13 percent of women of reproductive age, yet up to 70 percent of cases go undiagnosed by healthcare providers.
Though the impact of PCOS on fertility is the primary reason women seek assistance, there are other potential long-term health risks associated with PCOS. Unfortunately, many women may not pay attention to symptoms early on, leading to delayed diagnosis and management of the condition. The fact that some women have few, if any, symptoms doesn’t help either.
The people around Nzamurambaho, for example, associated all her symptoms to her weight. “So I got used to downplaying everything that had to do with my menstrual cycle,” she said, adding, “that’s why I think I didn’t go to the doctor immediately.”
What exactly causes PCOS and its full impact on a woman’s body are unclear. This is one of the reasons why Dr. Mugaba thinks the condition is “a neglected issue in the medical community. I don’t think [some of my colleagues] give it much importance.” PCOS is an area that requires attention and action. “It’s about time we genuinely consider the well-being of these girls. It’s our responsibility,” he stressed. “Here in Rwanda, we lack statistics, and that’s a problem. If you visit the WHO page, you’ll find that even they emphasize the need for more research.”
Nzamurambaho says she was relieved to “finally get people off her back. They kept saying ‘you’re not trying hard enough’,” she recounted. “No, I am trying harder than most of you. My body is just not cooperating.”
She added that the medical community “needs to sit together as a people and feel shame for the things that women go through. The things that they’re not giving us answers to. For normalizing women’s pain.”
And then they need to figure out how to be responsible, she said tightly. “Knowing that this problem has been around for so long and there is no cure, no vaccine to prevent it. It’s so widespread, how can there be no solution?”
