This review is co-authored by a patient and examines the psychological and emotional impact of having congenital hypogonadotropic hypogonadism (CHH). Despite being treatable, CHH can have profound effects on patients' mental health, body image, self-esteem, and psychosexual development due to delayed or absent puberty.
Patients with CHH frequently experience a "diagnostic odyssey" involving multiple referrals, misdiagnoses, and lack of information. Delayed diagnosis (often age 18 years or older) can cause lasting psychological harm, including depression, anxiety, social isolation, and difficulties with intimate relationships. Many patients lose trust in healthcare providers due to poor communication and delayed treatment.
Comprehensive care should address both medical and psychological needs. Important factors include earlier diagnosis, timely pubertal induction (by age 14), proper patient education, access to mental health services, and connections to peer support groups. Improving communication and providing appropriate information can significantly enhance patient outcomes, treatment adherence, and quality of life.
