Many CF symptoms worsen during menstruation despite treatment
Respiratory, digestive symptoms peaked during women's menstrual periods
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Women with cystic fibrosis (CF) may experience worsening respiratory and digestive symptoms around their menstrual periods, even when taking CFTR modulators, according to a new U.S. study.
Researchers found that symptoms such as coughing up mucus, bloating, stomach pain, and painful bowel movements tended to be worse during menstruation than at other phases of the menstrual cycle.
According to the team, “clinicians should encourage” women with CF “to track symptoms” throughout the month to help anticipate symptom flare-ups and better tailor care to different phases of the menstrual cycle.
The study, “Correlating menstrual cycles and cystic fibrosis symptoms in the era of highly effective modulators: Findings of the MENSTRUAL study,” was published in Endocrine Practice.
Women tracked 40 symptoms across 3 menstrual cycles
For many women living with chronic illnesses, symptoms can worsen at certain times of the menstrual cycle. This has been reported in conditions ranging from asthma and irritable bowel syndrome to anxiety disorders. However, much less is known about whether the same pattern occurs in CF, a chronic disease caused by genetic mutations that results in respiratory and digestive problems, among other symptoms.
Researchers have long suspected that female sex hormones influence the course of CF. Earlier studies conducted before the introduction of CFTR modulators — a class of medications that improve the function of the faulty CFTR protein in CF — suggested that changes in hormone levels across the menstrual cycle may affect lung function, lung inflammation, and the risk of pulmonary exacerbations, or periods when respiratory symptoms suddenly worsen.
“Further studies are needed in the post-[CFTR modulator] era, as this therapy is substantially improving survival rates, enabling an increasing number of females with CF to experience their reproductive years,” the researchers wrote.
With this in mind, researchers in the U.S. set out to determine whether CF symptoms fluctuate across the menstrual cycle and, if so, which symptoms change, when they occur, and how severe they become.
To answer these questions, they recruited menstruating women with CF, ages 18 to 45, who had regular menstrual cycles from June 2021 to March 2022. Participants completed an initial survey about their health, medications, and menstrual history before using a customized smartphone app to record the severity of 40 symptoms, including 19 CF-related, every day for three consecutive menstrual cycles.
Researchers then compared symptoms across the four phases of a typical 28-day menstrual cycle: menstruation (days 1-5), the follicular phase (days 6-13), ovulation (days 14-15), and the luteal phase (days 16-28). Following the tracking phase, interviews were also carried out to explore symptom recognition, lived experiences, self-management, and gendered selfhood in the context of chronic disease.
Of the 187 women screened, 72 completed the initial survey and 64 completed three consecutive menstrual cycles of symptom tracking. Most women (63 of 72, or 88%) were taking CFTR modulators. Of that group, 92% were on Trikafta (elexacaftor/tezacaftor/ivacaftor). At the start of the study, women taking CFTR modulators reported less lung mucus production and coughing than those not receiving these therapies.
Respiratory, gastrointestinal symptoms peaked during menstruation
Overall, participants rated most daily symptoms as absent or mild. Still, many CF-related symptoms became significantly more severe during menstruation than at other phases of the menstrual cycle. Interviews with 20 women confirmed that these symptom fluctuations were noticeable and often disrupted work, household responsibilities, childcare, and social activities.
Among respiratory symptoms, coughing up mucus was significantly worse during menstruation than during the follicular phase, regardless of whether women were taking CFTR modulators.
“Among the most prominent ones I noticed was an increase in coughs. It wasn’t outrageous to the point where I thought I was sick or anything, but I didn’t realize how closely it correlated to certain timing in the month,” one participant said.
Even so, women on CFTR modulators said their overall mucus production and coughing were dramatically lower than before treatment.
Women also reported more severe sinus headaches during menstruation, while a runny or stuffy nose tended to be worse during the follicular and luteal phases.
Several gastrointestinal symptoms also peaked during menstruation, regardless of CFTR modulator use. Bloating was significantly worse than during all other phases of the menstrual cycle, while gas was more severe than during the follicular phase. Stomach pain and pain during bowel movements were also significantly worse during menstruation than during the luteal phase.
Some women reported increasing their pancreatic enzyme doses, which help people with CF digest food and absorb nutrients, before or during menstruation to help manage recurring gastrointestinal problems.
“The study’s systematic collection of data on women’s symptom trends, combined with participants’ narratives about how they used strategies to address these fluctuations, can help inform new clinical management recommendations that address and help alleviate CF symptom variations throughout the menstrual cycle,” the researchers wrote.
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