Share Your Sleep Story has proven to be a valuable platform for discussing sleep management, disorders, personal experiences, societal challenges, and the urgent need for increased research and awareness.
Guillaume, 47, was immediately eager to raise awareness about Sleep-Related Painful Erections (SRPEs), a rare and debilitating parasomnia that he experiences firsthand (parasomnias are troubles that provoke undesirable behaviours or disruptions during sleep).
When I met Guillaume on a sweltering summer day, he spoke openly about his journey with SRPEs, which began around 2010 and progressively worsened.
For him, an episode typically means being jolted awake by intense pain associated with an erection. According to medical literature, the pain in such episodes can range from uncomfortable to severe. In Guillaume’s case, it is mostly severe. On the other hand, for him and for others who live with this parasomnia, it is sometimes the persistence of the nocturnal erection – more than the pain – that causes an awakening.
Notably, these erections are not linked to sexual desire, erotic dreams, or mental imagery. Guillaume confirms:
I kept a dream journal. The proportion of times I woke up like this after having an erotic dream—something common during REM sleep—is so insignificant it would only be considered an exception or coincidence.
Staying in a horizontal position often intensifies the pain, so Guillaume has to fully awaken, walk around his room, breathe deeply, attempt to urinate, and wait for the pain to subside. The time between the initial pang and any return to restful sleep can be long—if sleep returns at all. Usually, he estimates that it takes about 30 minutes between waking up and going to sleep again. As a result, his nights are severely fragmented, and he rarely feels refreshed in the morning.
To cope, Guillaume schedules daytime naps. Otherwise, he wouldn’t be able to enjoy basic activities with his partner:
“I wouldn’t even be able to finish watching a movie with her.”
While the majority consider that there are not enough hours in a day, for him, it is the opposite. Exhausted, he spends many hours of poor quality, often lying down, waiting for a nap. In addition, when he takes a nap prematurely during the day, his evening promises to be more difficult.
Therefore, his window for socializing has narrowed dramatically. The term social jet lag takes on new meaning when speaking with individuals living with rare conditions, chronic disorders, or sleep deprivation, and it is often tied to diminished self-esteem and emotional isolation.
By 2012, Guillaume was experiencing multiple SRPE episodes per night, leading to extreme fatigue and difficulty concentrating and memorizing at work. This professional jet lag eventually resulted in a medical leave of absence.
MEDICAL CONSULTATIONS AND UNFULFILLED HOPES
As his symptoms intensified, Guillaume sought help from multiple medical professionals including urologists, neurologists, pharmacists, sleep specialists, and even emergency room physicians. One ER doctor prescribed him a hypnotic medication which proved to be an inadequate and ineffective short-term fix for a long-term problem.
It wasn’t until 2014—four years after his first symptoms—that Guillaume discovered information about SRPEs in online forums and scientific articles. Not a single specialist had previously mentioned the condition.
This discovery led him to undergo sleep studies at research hospitals and sleep labs around 2016. Unfortunately, the studies failed to reflect his typical sleep patterns. The unfamiliar lab environment, discomfort, and intrusive setup (electrode wires, shared bathrooms, unfamiliar schedules) can make restful sleep difficult to attain. In Guillaume’s case, the sleep lab team administered a benzodiazepine to ease his anxiety about the environment and schedule. Ironically, the medication prevented the occurrence of any painful erections during the study—his first uninterrupted night in years—rendering the study inconclusive.
Guillaume began taking this benzodiazepine regularly. It helped initially but led to tolerance and dependency. The painful erections returned, and he now struggles with withdrawal and medication dependence. Over the years, he estimates trying more than 50 medications—each with hopeful promises, each failing to deliver lasting relief, and each accompanied by side effects ranging from headaches to serotonin syndrome.
In addition to having kept a dream diary and a sleep diary, Guillaume has sought help from psychologists, physiotherapists, chiropractors, osteopaths, hypnotherapists and acupuncturists. He has tried pelvic exercises. While he maintained some of these relationships and good habits, nothing has provided lasting results yet.
PSYCHOSOCIAL IMPACTS
SRPEs have resulted in permanent disability, barring Guillaume from continuing in a full-time professional role he had studied hard to pursue. This disrupted not just his career, but a shared life plan with his partner.
Guillaume has described feeling isolated, frustrated, and in constant “survival mode.” The condition has strained family relationships, and over time, some in his social circle began downplaying the severity of his pain and the consequences that it entailed in his life.
Still, he remains a creative and altruistic person who finds joy in small moments—playing guitar, taking short walks, eating ice cream, volunteering—and highlights the invaluable support of his partner.
ADVOCACY AND COMMUNITY BUILDING
Guillaume dedicates some of his time to a support group for individuals affected by SRPEs (or living with someone who is). The group, which started with 2 members, now has nearly 300 members and serves as a safe space for sharing, support, and advocacy for those who are searching for therapeutic avenues.
While SRPEs may be statistically rare, it’s likely underreported—due to stigma around the intimate, embarrassing and unusual nature of the symptoms, lack of awareness, and the fact that men (who make up the majority of affected individuals) are generally less represented in support communities.
Guillaume stressed the importance of breaking this silence:
Reducing isolation starts with naming the condition. One of the goals of our group is to say: ‘you are not alone’
I told him I admired how he found ways to contribute meaningfully to society outside the traditional 9-to-5 model through his advocacy.
NEXT STEPS
- More Research
Guillaume and I discussed the broader challenges of researching rare diseases. He is realistic about the low incentive to study conditions affecting a small percentage of the population. But as a patient, he insists: more research is urgently needed. The scarcity of published literature not only hampers patient understanding but also hinders medical professionals from diagnosing and treating effectively. - Improvements to Sleep Study Protocols
We both had similar, inconclusive experiences in sleep labs—leading to wasted resources and prolonged uncertainty. A protocol involving multiple nights could yield more accurate data and reduce the cycle of “medical wandering.” Though such studies are resource-intensive and waitlists are long, the single-night model may fail the patients it’s meant to help. Sleep studies are often conducted at fixed times, which may not align with patients’ natural sleep cycles and make them feel hypervigilant. - A Shift in Attitude
Guillaume emphasized the need for humility and curiosity in the medical field. He remembers one urologist who candidly admitted their limited knowledge of SRPEs and offered to consult with a sleep specialist. This moment of collaboration helped confirm the parasomnia diagnosis—and ruled out other causes.
FINAL THOUGHTS
Guillaume’s story is a powerful reminder of the challenges many face while living with rare and poorly understood conditions. Through his resilience, advocacy, and determination, he continues to raise awareness and push for systemic change—ensuring that others may find answers and understanding more quickly than he did.
With the support and consent of Guillaume (pseudonym), who graciously revised some passages.
