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Peer-reviewedCC BYJournal of the Endocrine Society

The lost scent of excitation: dissociation between cognitive desire and physical arousal in Kallmann syndrome

Abstract

Kallmann syndrome (KS) is a rare form of congenital hypogonadotropic hypogonadism (CHH) that causes delayed puberty and infertility, accompanied by a lifelong loss of smell. While hormone replacement therapy (HRT) restores standard hormone levels, the specific impact of an absent sense of smell on sexual relationships and desire remains largely unstudied. This study examined how lifelong smell loss shapes the psychosexual experiences of affected individuals. 38 adults were evaluated: 19 patients receiving stable HRT (10 with KS who lacked a sense of smell and 9 with CHH but normal smell) and 19 healthy matched individuals. Participants completed validated questionnaires assessing sexual desire, physical arousal, romantic behaviors, and attitudes toward intimacy. HRT effectively restored baseline sexual desire and general attitudes across all patients. However, individuals with KS reported significantly lower physical sexual arousal and engaged in far fewer sexual behaviors than those with an intact sense of smell. The lack of smell independently predicted lower arousal levels, despite patients maintaining normal mental desire and positive attitudes toward sex. These findings show that hormone therapy alone is insufficient to fully restore the sexual experience in KS. The lifelong absence of smell creates a distinct divide between mental desire and physical arousal, undermining sexual confidence and intimacy. Healthcare providers should therefore incorporate psychosexual counseling into routine clinical care to help patients navigate these sensory and emotional challenges.

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BibTeX
@article{seminara2026lost,
  title = {{The lost scent of excitation: dissociation between cognitive desire and physical arousal in Kallmann syndrome}},
  author = {Giuseppe Seminara and Ettore D’Aleo and Marco Leuzzi and Maria Carmela Zagari and Emanuela A Greco and Antonio Aversa},
  journal = {Journal of the Endocrine Society},
  year = {2026},
  month = oct,
  doi = {10.1210/jendso/bvag247},
  url = {https://europepmc.org/article/PMC/PMC13724271},
  note = {CC BY},
}
RIS
TY  - JOUR
TI  - The lost scent of excitation: dissociation between cognitive desire and physical arousal in Kallmann syndrome
AU  - Giuseppe Seminara
AU  - Ettore D’Aleo
AU  - Marco Leuzzi
AU  - Maria Carmela Zagari
AU  - Emanuela A Greco
AU  - Antonio Aversa
PY  - 2026
DA  - 2026/10/22
JO  - Journal of the Endocrine Society
DO  - 10.1210/jendso/bvag247
UR  - https://europepmc.org/article/PMC/PMC13724271
AB  - Kallmann syndrome (KS) is a rare form of congenital hypogonadotropic hypogonadism (CHH) that causes delayed puberty and infertility, accompanied by a lifelong loss of smell. While hormone replacement therapy (HRT) restores standard hormone levels, the specific impact of an absent sense of smell on sexual relationships and desire remains largely unstudied. This study examined how lifelong smell loss shapes the psychosexual experiences of affected individuals. 38 adults were evaluated: 19 patients receiving stable HRT (10 with KS who lacked a sense of smell and 9 with CHH but normal smell) and 19 healthy matched individuals. Participants completed validated questionnaires assessing sexual desire, physical arousal, romantic behaviors, and attitudes toward intimacy. HRT effectively restored baseline sexual desire and general attitudes across all patients. However, individuals with KS reported significantly lower physical sexual arousal and engaged in far fewer sexual behaviors than those with an intact sense of smell. The lack of smell independently predicted lower arousal levels, despite patients maintaining normal mental desire and positive attitudes toward sex. These findings show that hormone therapy alone is insufficient to fully restore the sexual experience in KS. The lifelong absence of smell creates a distinct divide between mental desire and physical arousal, undermining sexual confidence and intimacy. Healthcare providers should therefore incorporate psychosexual counseling into routine clinical care to help patients navigate these sensory and emotional challenges.
SN  - 2472-1972
ER  -