“Doctors Thought My Missing Period Was From Anorexia. Then, I Was Diagnosed With PCOS.”

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Roohi Jeelani PCOS diagnosis story

Roohi Jeelani, MD, a Chicago-based reproductive endocrinologist, was around 14 years old when her mom noticed that she wasn’t getting her period. While it’s not unusual to get your first period in your mid-teens — according to research published in the National Library of Medicine, menarche, or the first menstrual period, typically occurs between the ages of 10 and 16 — Dr. Jeelani’s cousins had all gotten theirs years earlier, so her mom was concerned. When the two went see a pediatrician, Dr. Jeelani and her mother were told that the lack of period was potentially due to an eating disorder. This assessment was based simply on how she looked. “She’s too skinny. She may be anorexic. Make sure she’s eating,” Dr. Jeelani recalls the doctor telling her mother.

But Dr. Jeelani knew that wasn’t the case. She was a very active teenager who participated in dance, gymnastics, and swimming, which naturally resulted in her slimmer body. Still, her mother took the doctor’s words to heart.

“[My mom] was being super paranoid. We had just moved [from another state] and she was worried that something else was going on — especially when they said, she’s anorexic, it’s an eating disorder,” Dr. Jeelani tells POPSUGAR. “I think it freaked her out. . . . Every day she would get me — I still remember — on my way to school, a sandwich from Burger King, a Dr. Pepper, and a Snickers bar for lunch.”

But after six months, she had gained very little weight and still didn’t have a period. Her mother and she spent the next few months visiting doctors: a primary care physician, an ob-gyn, and, finally, a reproductive endocrinologist.

It was that visit to the reproductive endocrinologist that led her to a diagnosis.

Dr. Jeelani was intimidated during that first visit to the reproductive endocrinologist. “I still remember sitting in this super intense waiting room,” she recalls. “There were so many emotions. There was crying, there was happiness, and it was jam-packed.” She didn’t feel like she, nor her symptoms, belonged here — especially not when she was led to the exam surrounded by anatomy posters of penises and vaginas.

After an initial consultation, some bloodwork, and a follow-up appointment, Dr. Jeelani was diagnosed with polycystic ovary syndrome, or PCOS, a hormonal disorder that causes the body to produce higher-than-usual amounts of androgen (a sex hormone), which can cause acne, excess facial- and body-hair growth, and weight gain in addition to irregular periods, Paula Amato, MD, a reproductive endocrinologist and professor of obstetrics and gynecology at Oregon Health and Science University in Portland, previously told POPSUGAR. The condition can also affect the ovaries’ ability to release eggs.

In the follow-up appoint, Dr. Jeelani says she was told, “You’re gonna need fertility help, and you don’t ovulate, and it’s very common.” Then the doctor suggested that she go on birth control pills, a treatment method that shocked her mother at the time. In Indian households, it’s common for conversations around sex and pregnancy — let alone taking medication to prevent pregnancy — to be frowned upon, Dr. Jeelani tells POPSUGAR.

The doctor started her on Provera, a medication used to treat absent or irregular periods, in order to induce bleeding. But Dr. Jeelani never took the birth control the doctor prescribed.

“[Culturally] we think birth control means literally prevention of pregnancy. And so we couldn’t comprehend why or understand the why [I should take it],” Dr. Jeelani says. So she kept having irregular cycles, then came the acne and hair growth. “I had to beg my mom to let me get my face waxed,” Dr. Jeelani says.

Eventually, in college, she had a bleed that lasted two months straight and ended up having to get a dilation and curettage procedure (D&C), a surgical procedure in which the cervix is expanded so that any abnormal tissues can be removed from the uterine lining. “Initially, they tried giving me high dose birth control to see if they could suppress everything. It didn’t work,” Dr. Jeelani says. The D&C was necessary to “clean out that lining that needs to shed and bring it back to baseline,” Dr. Jeelani says.

“At that point, [the doctors] were like, ‘This can become a cancer. You need to manage this and birth control is not just for contraception, but to help control your hormones, to protect you,'” Dr. Jeelani says.

For the next few years, things leveled out. But nothing could prepare her for the fertility journey ahead.

The birth control helped with many of Dr. Jeelani’s PCOS symptoms: her acne improved, skin became less oily, and she started having periods once a month. But as she got older, met her now-partner, and was looking to start a family, the condition reared its head with health complications again.

During her medical residency, she and her partner tried to get pregnant with the help of medications like Clomid and Letrozole, which are used to induce ovulation. But nothing worked. She tried menstrual-cycle tracking, timed intercourse, and IVF, but wound up suffering several miscarriages and early losses. “I would get frustrated and switch clinics,” Dr. Jeelani recalls.

This continued for about three years, until she got pregnant with her son in 2013. Dr. Jeelani went on to have two more children: her first daughter in 2015 (via a spontaneous pregnancy) and her second daughter in 2022 (after undergoing IVF).

Today, as a reproductive endocrinologist and infertility specialist herself, Dr. Jeelani works to help others through similar experiences. She hopes to help her patients through some of the same hiccups and hardships that she faced.

“I think it’s really important to explain the now, the future, the past, and how it happened [of a condition]. [Medical professionals] give a diagnosis, and we just leave it; I think we do a really bad job of explaining the why and how we got there,” Dr. Jeelani says. Looking back on when she was first misdiagnosed, “It was almost what I hear from my patients — [doctors are] like, ‘We don’t know what the problem is, but just go mask it. Go eat. Go fix this,” she tells POPSUGAR. But that type of thinking puts the onus back on the patient to find solutions, as if it’s their responsibility to do so, she says.

In her daily practice, Dr. Jeelani emphasizes to her patients — especially those who have been misdiagnosed or get diagnosed with PCOS later in life or later in their fertility journey — just how different the condition can look. “There’s not a blanket appearance,” she tells POPSUGAR. And your journey and needs with PCOS will evolve and change over time, especially if you’re trying to start a family. Her best piece of advice: find the doctor that matches your style of learning and communication. This is a condition that will impact you for the rest of your life and you want to build a healthcare team that truly supports you.

Image Source: Kiki Khan

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