Undertreated, Underdiagnosed: Experts Address Genital Psoriasis

Genital psoriasis, while affecting an estimated 6 million Americans, remains an underrecognized and undertreated subset of the broader psoriasis spectrum.¹ This condition, which disproportionately impacts psychological well-being, intimacy, and daily function, is the focus of a recent publication by the Genital Psoriasis Wellness Consortium.² Its 14 consensus statements—published in the Journal of the European Academy of Dermatology and Venereology (JEADV) Clinical Practice—represent a pivotal step toward standardizing care, improving patient-provider dialogue, and expanding treatment access for patients with genital involvement.³

An Urgent Consensus

According to Jennifer C. Cather, MD, FAAD, medical director of Mindful Dermatology and a member of the consortium, this effort was long overdue. In a recent news release on the statements, Cather said: “With the current lack of formal guidelines around genital psoriasis, the goal of convening the Consortium was to bridge the gaps in clinician-patient communication, develop tools and processes that aid in identification and diagnosis, and better-informed shared treatment decisions.”¹

The consortium’s process was comprehensive. A literature review of 78 studies was followed by a modified Delphi approach with multidisciplinary input—including dermatologists, nurse practitioners, psychologists, and gynecologists. “There was no disagreement,” noted Melodie Young, MSN, FNP-c, coauthor of the statements, in a recent interview with Dermatology Times. “The way we collaborated and the way everybody confirmed and reassured us that we were doing it right—it happened pretty quickly.”

The outcome? Fourteen key statements structured around 3 thematic pillars: diagnosis and clinical conversations, quality of life impact, and treatment planning.

Psychological Weight

Unlike more visible forms of psoriasis, genital involvement is often concealed—physically and emotionally. Patients may suffer for years before discussing it with a provider. “Two-thirds of people get genital involvement at some point in their life span, and it’s something that a lot of people don’t want to talk about,” Cather told Dermatology Times. “I’ve missed it as a physician… They didn’t tell me. They didn’t tell their partner. It completely changed their sex life.”

The condition’s impact is more than skin deep. Beyond pain, itching, and discomfort, genital psoriasis can disrupt intimate relationships, create feelings of shame, and hinder reproductive planning. “I had a gentleman this morning… we were trying to figure out how to get the skin in good enough shape for a man to be able to have an erection and impregnate his partner,” Young recalled. “It is painful. Painful and it’s itchy, and it’s just uncomfortable.”

Shifting the Conversation

Central to the consensus is the need to normalize genital skin examinations. The statements advocate for comprehensive exams early in the process, using specific communication strategies to reduce discomfort among patients. “It usually takes asking people about this 3 to 5 times before they’ll actually feel comfortable,” Cather added. One of the recommended approaches involves starting with neutral language: “Do you have any redness or scaling or anything unusual going on inside your underwear area?”

Flexibility, cultural sensitivity, and rapport are vital. As Young told Dermatology Times, “Sometimes people need to joke their way through it. Sometimes they need to be very stoic… You just have to be flexible.”

Critically, providers must take responsibility for initiating these conversations. “We need to take ownership for the way we do the exam, ask the questions, and how to initiate it,” she added. “If there’s skin on it, it’s our job to examine it.”

From Clinic to Coverage

Even when diagnosed, treatment access remains a challenge. Many topical therapies—including more advanced nonsteroidal agents such as tapinarof and roflumilast—are difficult to obtain due to insurance restrictions. “Sometimes you have to talk with the medical director…to say, ‘Do you understand the only thing we have on-label to treat those areas has been ixekizumab, and now roflumilast,’” Young noted.

Cather reinforced this: “Picture the impact. Problems with erections, pain after sex… They’re itching through the night, and they don’t sleep. Sleep deprivation is an independent risk factor for cardiovascular disease. So, we’re looking for a reason to treat.”

The consortium is also pushing for a unique International Classification of Diseases, Tenth Revision, Clinical Modification code for genital psoriasis, which could further improve documentation, research, and reimbursement pathways. “We need a dedicated code. We need to increase awareness,” said Cather.

A Foundational Shift in Care

Several of the consensus statements focus on how to capture the actual burden of disease—both clinical and psychosocial. Tools such as the dermatologic intimacy scale and Patient Health Questionnaire-9 are encouraged. Suggested patient questions include: “How much does your genital psoriasis impact your daily decisions?” and “How much does it affect your relationships?”

Importantly, the recommendations emphasize shared decision-making, early intervention, and treatment goals beyond skin clearance, including restoration of intimacy, confidence, and comfort.

The Road Ahead

Consensus alone is not the end point. The authors agree that more research is needed, particularly into disease progression, optimal treatments, and psychosocial impacts. But even more urgently, the field must adopt the tools already available. “Twenty-five years ago…you cannot imagine how awful it was to have this disease and how little we had to offer,” Young told Dermatology Times. “Now…medicines are available. We just need to introduce them [to the patients].” In closing, Cather offers a simple, powerful vision: “Healthy genitalia make happy patients.”

References

1. New consensus statements on impact of genital psoriasis on patients from Genital Psoriasis Wellness Consortium published in Journal of the European Academy of Dermatology and Venereology Clinical Practice. News release. Arcutis Biotherapeutics. May 15, 2025. Accessed August 6, 2025. https://www.arcutis.com/new-consensus-statements-on-impact-of-genital-psoriasis-on-patients-from-genital-psoriasis-wellness-consortium-published-in-journal-of-the-european-academy-of-dermatology-and-venereology-clinical-prac/

2. Yang EJ, Beck KM, Sanchez IM, Koo J, Liao W. The impact of genital psoriasis on quality of life: a systematic review. Psoriasis (Auckl). 2018;8:41-47. doi: 10.2147/PTT.S169389

3. Cather J, Young M, Boreham M, et al. Genital psoriasis: shining light on this hidden disease. JEADV Clinical Practice. Published online May 14, 2025. doi:10.1002/jvc2.70043