Being born with cystic fibrosis (CF), I knew from adolescence that I was unlikely to conceive naturally. To what extent, or what potential side effects or challenges regarding sexual/hormonal development I might experience, I was in the dark. While seeking information and validation, I ran into health care roadblocks, either from lack of research on the subject, gaslighting through incorrect information, or simply from a lax attitude, as it wasn’t deemed life-threatening.

Historically, the lifespan of CF patients was, at best, early adulthood. CF specialist physicians were not well trained in the sexual health aspects of the disease. In discussions with providers, we’ve found that many may not feel comfortable discussing sexual issues with their patients or find that logistical difficulties prevent care teams from the longer conversations these sensitive topics require. As a result, many patients are not educated, leaving them to self-advocate, find outside resources for their sexual health concerns, or just continue with issues unaddressed.

Figure. Bone density upward trend post lung transplant, while undergoing testosterone and human chorionic gonadotropin injection therapy. AP indicates anteroposterior; BMD, bone mineral density; NHANES, National Health and Nutrition Examination Survey; YA T-score, young adults T-score.

Despite research as early as the 1980s suggesting a high prevalence of hypogonadism in male CF patients,¹ it is not routine to investigate reproductive hormone abnormalities in CF patients. Recognizing warning signs of hormone irregularities is further complicated by the crossover of similar symptoms in CF. Symptoms and side effects of prescribed CF medications and treatments often mimic issues that would be considered signs of abnormal hormonal or sexual development in otherwise healthy populations. Due to this, patients’ symptoms are often dismissed as being “par for the course” with little to no exploratory methods used or treatment. I questioned my sexual development as early as my teenage years through anecdotal conversations among my peers and later after college when I began to really take my health care very seriously. As I studied for fitness and kinesiology certifications and dove into an athletic personal training career, I was exposed to many illicit performance-enhancing drugs and therapies. These experiences spurred new questions around muscle mass/wasting, recovery times, fatigue, etc, I felt could be better addressed. Again, when discussing these topics with my CF team, I was dismissed and given no new resourcing. I spent the next decade in doubt of my own symptoms until experiencing the pain of retrograde ejaculation for the first time. It was determined that medications were the cause, and resolved after coming off the meds; however, this brought up past conversations and renewed desire for research around hormones and possible issues I had or might experience in the future. As my pulmonary health declined to end-stage lung disease, I was offered an experimental medication as a Hail Mary attempt. The drug ended up making me very sick and, in the process, affected my brain and hormone levels further. During this time every symptom I was already experiencing was pushed to the extreme. My sleep cycles, reading comprehension, muscle wasting, and lethargy were abysmal. My previous diagnosis of osteoporosis and osteopenia advanced to a critical state. It was during this time that I discovered the study that suggested a large portion of male CF patients had hormone imbalances and likely low testosterone.¹ I pressed my team for labs, and these confirmed the study’s suggestion. Asking my endocrinologist for treatment options, I was again gaslighted and left to find a specialty hormone replacement therapy (HRT) clinic. I had great success with HRT very quickly, but my lung function had declined beyond saving. In April 2019 I received a double lung transplant, and it was at this time that my transplant team forced me to stop all hormone therapy. With no taper down, I crashed. At 5 weeks without HRT and postoperatively I explained that I was resuming therapies. This was met with shocking statements made to me by the head of the transplant facility. It became clear that at the top of this field there is a lack of information regarding hormone issues and modern treatments. I continue to be seen by specialists outside of my CF and transplant care teams. Beyond infertility topics, male sexuality and hormone treatment are, at best, limited within the CF world.

I maintain a high level of physical fitness, now with even greater success due to new lungs and balanced hormone treatment. At 5 years post transplant my lung function is outstanding, I have completely reversed all bone loss and I’ve gained over 20 lb of skeletal muscle. HRT, peptides, and greater awareness of my body’s performance have dramatically improved my health. I am easily in the best shape of my life at 38 years old. My success cannot be attributed only to new lungs.

Resources for information and conversation around hormones and sexual health for CF males remain slim at best. My wife and I founded Breathe Easy International many years ago to connect with CF patients to provide fitness, nutrition, and lifestyle information to support rebounding from hospitalizations quicker and staying out of the hospital longer. We have since expanded that vision to include the top 10 most prevalent chronic respiratory conditions, including long COVID and pre-/postlung transplant.² We consider sexual/hormonal function to be significant in our patient groups.³

To maintain my health, I take over a dozen daily medications for transplant and CF needs and as many nutritional supplements. New urological challenges have developed post transplant, and until a call with Dr Ramasamy, I had been unable to find validation. Currently there are no noninvasive treatment options for these “blockages,” but it is comforting to know they aren’t my imagination or unknown. I am pleased to say that following our team’s visit to the University of Miami Health System, working with Dr Ramasamy and team, they have been able to compile and publish a significant amount of data to bring the need for hormone conversations with CF males to the forefront.⁴ I am thankful for renewed life, and every new thing I learn about my body is another piece of information that we draw from to help other patients thrive rather than just survive.