PFF Insights

Let’s Talk about Sex and Pulmonary Fibrosis

by Dr. Kerri Johannson
February 14, 2024

For many people, engaging in sex and sexual activities is an important part of life, whether partnered or on one’s own. Yet, sex remains a taboo subject in our culture and one that is not often discussed, particularly during medical visits. We wanted to use February and Valentine’s Day as an opportunity to highlight this important topic here at the Pulmonary Fibrosis Foundation.

For people living with pulmonary fibrosis (PF), and their loved ones or partners, PF may be affecting their sex life. We know that many patients with PF experience exercise limitations, breathlessness with exertion, cough, and reduced energy levels. Some patients also have other disorders such as pulmonary hypertension as a consequence of their PF, or heart disease. Many PF patients use supplemental oxygen, with concentrators, tanks, tubing and all the challenges that go with it. Any and all of these factors can impact someone’s sex life, and may be affecting their quality of life, or causing concerns. It recently occurred to me that even though my patients’ lung disease might be negatively affecting a major part of their lives (e.g. sex life), we rarely ask about it, and no one has studied it to learn more or understand how we can support our patients through this aspect of their PF journey.

Along with my colleague, Dr. Na’ama Avitzur, we are currently working to understand how PF affects our patients’ lives, whether through breathlessness, fear of over-exertion, complications with oxygen, libido or sexual dysfunction. Using questionnaires, surveys and one on one interviews, we’re asking about symptoms, whether there is distress or concern, and how patients would like to see this topic addressed. We are hoping to better understand how PF affects this aspect of life, and how we might better support patients, whether it’s during clinical visits, through the creation of educational materials, or by simply starting the conversation.

Based on what we have learned so far, we suggest that people living with PF consider sex and sexual activities as a form of exercise or exertion. So, it’s definitely worth trying – just like exercise! Make sure to monitor symptoms and listen to your body so that if you’re breathless or fatigued, pace yourself 🙂. If you use oxygen, and would normally turn it up for exertion, plan to similarly turn it up during sex. Like every aspect of life, communication is key. So, if you’re with a partner, communicate openly about perceived limitations, how you’re feeling and any concerns you may have. Best of all, be creative and find ways to make it work for you, despite your PF.

We are in the midst of analyzing our data on sex and sexual function in patients with PF, so please stay tuned for the results! We’re excited to soon be able to share what we’ve learned and figure out next possible steps to help develop resources and tools to support patients and their partners.

Wishing you all a Happy February and a Happy Valentine’s Day!