Managing menopause alongside CF is uncharted territory

I never thought I’d make it to menopause. When I was growing up with cystic fibrosis (CF), living beyond young adulthood felt ambitious. Living to my mid-50s? That was science fiction. Yet here I am, facing hot flashes, brain fog, and sleepless nights — symptoms my CF care team never prepared me for because they couldn’t have imagined I’d get here, either.

We are pioneers in uncharted territory, and honestly, I don’t know whether to feel grateful or frustrated. Most days, I feel both.

The reality is stark: There simply aren’t enough doctors who understand how to manage menopause alongside CF. I already navigate my care with an otorhinolaryngologist, a gastroenterologist, and an endocrinologist for CF-related diabetes (CFRD), and each doctor has learned, through treating me, how their specialty intersects with CF care.

But a gynecologist or hormone specialist with CF expertise? That feels like asking for the impossible.

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I vacillate constantly. Some days, I’m overwhelmed with gratitude just to be alive. I can breathe easily after my double-lung transplant, and that alone feels miraculous — more than I ever dared to hope for. On those days, I tell myself that breathing easy is more than enough, and I shouldn’t complain about anything else.

But on other days, the frustration hits hard. I’m already managing medications for CF, CFRD, stage 3 chronic kidney disease, a history of deep vein thrombosis, and post-transplant care. Now add menopausal symptoms to the mix. Should I really just suffer through hot flashes that drench my sheets at night, brain fog that makes me forget words mid-sentence, and sleep so poor that it compounds my CF fatigue? Am I asking too much to want relief from these symptoms, too?

I don’t think I am. I fought too hard to get here to accept that menopause must be endured in silence.

While science is moving forward, some aspects of care are lagging behind. CFTR modulators are transforming lives, and transplant protocols grant some patients new lungs. But integrated care for aging women with CF? Healthcare infrastructure hasn’t kept up with the reality that we’re living longer and entering life stages that many experts never anticipated.

We need CF care teams to expand to include specialists who understand both worlds. A gynecologist who knows how hormone changes might affect lung function or medication absorption. An endocrinologist who understands menopausal hormone therapy in the context of CFRD and chronic inflammation. But if we don’t even have consistent integration of gastroenterology or otorhinolaryngology across all CF care centers yet, how can we expect specialized menopausal care?

I’m not sure what the answer is. Maybe it starts with conversations like this one, acknowledging that we exist, that our struggles are valid, and that wanting relief from menopausal symptoms while managing CF isn’t asking too much. We’re simply asking for comprehensive, compassionate care.

For every woman with CF who is navigating the stages of menopause, I hope you’ve found relief, either from your CF symptoms or your menopausal ones. I hope you know you’re not alone in this strange, uncharted territory. And I hope that science and medicine catch up to us soon, because we deserve care that addresses us as whole people, not just as the disease we were born with.

Until then, we keep showing up and advocating. We keep living beyond!

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.