A new survey shows the devastating toll this condition can take on those who live with it, even when it's hidden from the public.

By Amanda MacMillan
April 02, 2019

Psoriasis can be an isolating condition: The autoimmune disorder causes scaly patches to grow on the skin, and when they’re visible to the world—on the face, arms, and legs, for example—people with the condition can experience embarrassment, discrimination, and even ridicule.

But that’s not the only way psoriasis can affect self-confidence and make it difficult for sufferers to get close to others. A new survey finds that when psoriasis affects the genital area, the disease can also cause significant distress and alienation.

The survey, from Eli Lilly and Company (which markets an injectable psoriasis drug) was conducted online among 997 U.S. adults with symptoms of genital psoriasis. Two-thirds of respondents said that they have stronger feelings of hatred toward the psoriasis on or around their genitals compared to other affected areas of their bodies.

RELATED: 6 People With Skin Conditions Share the Most Hurtful Things Ever Said to Them

What is genital psoriasis?

For people who live with genital psoriasis, the condition is all too familiar. But for those who have no experience with the disease, the idea that the skin condition can affect the genitals may be surprising—and, yes, even a little scary.

But Alina Bridges, DO, a dermatologist at the Mayo Clinic in Rochester, Minnesota, says it’s important for people to understand that psoriasis on the genitals is similar to psoriasis elsewhere on the skin: It’s not contagious, she says, and it has nothing to do with how clean or hygienic a person is.

Psoriasis is a chronic autoimmune disease, which means that it occurs when the body’s immune system works in overdrive, causing skin cells to multiply at faster-than-normal rates. In the most common type of psoriasis, known as plaque psoriasis, those cells can build up on the surface of the skin, leading to raised red or silvery patches.

But psoriasis on or around the genitals (including the vulva, the penis, and the scrotum) can look and feel different in several significant ways, says Dr. Bridges. “Sometimes it’s just a flat red rash that appears in skin folds,” she says. (This is known as inverse psoriasis.) “If the penis is affected, psoriasis can appear as tiny red bumps or pustules.”

And because it’s in an area that’s exposed to sweat, chafing, and frequent irritation, it can cause more itching and discomfort than psoriasis on other parts of the body. It can also be more difficult to manage.

About 125 million people worldwide have psoriasis, and it can occur anywhere on the body. A recent study found that up to 63% of adult psoriasis patients have experienced genital involvement over the course of their disease.

“It’s not that unusual of a location to get psoriasis, and sometimes people get it just there by itself and nowhere else,” says Dr. Bridges. “Other times, people have it around their genitals as part of generalized psoriasis all over their bodies.”

RELATED: 10 Things You Need to Know About Living With Psoriasis

How does genital psoriasis affect people?

The new survey highlights just how much of a toll genital psoriasis can take on mental and emotional health. About 56% of respondents agreed with the idea that people would view them negatively if they knew about their condition. And 51% said they are worried about their genital psoriasis being mistaken for a sexually transmitted infection.

Even more respondents—66%—said that genital psoriasis impacts their overall self-confidence, and 69% said it impacts how they feel about themselves. Many patients said that they socialize less because they worry about itching badly and that genital psoriasis affects their ability to travel, take vacations, meet new people, and be “in the moment” for important events.

It’s not surprising, then, that more than half of survey respondents agreed that their condition makes it hard for them to have close relationships. Even among those who had a significant other at the time of the survey, 54% said their condition affects their relationship with their partner, and a whopping 68% said it impacts their desire to engage in sexual activity.

Dr. Bridges says that many of her patients have had similar experiences. “Oftentimes, people are worried when it develops because they don’t know what it is,” she says. “They might not know it’s psoriasis, especially if they don’t have it anywhere else on their body.”

Doctors can even have a hard time telling genital psoriasis apart from other skin conditions (like eczema) or infections, she adds. The condition can also resemble a rare form of skin cancer called extramammary Paget disease, so a biopsy is sometimes needed to confirm a diagnosis.

RELATED: 13 Reasons You Have Scaly Skin—and How to Get Rid of It

How is genital psoriasis treated?

There are several drugs on the market that are effective in the treatment of psoriasis. If a person only has psoriasis in or around their genital area, Dr. Bridges says doctors will likely suggest trying a topical treatment (like a steroid medication or a vitamin D analogue, a prescription cream or ointment derived from vitamin D) first.

“We may also tell them to use Aquaphor or Vaseline or diaper-rash ointment in the area if they have a lot of irritation and they need more barrier protection,” says Dr. Bridges.

RELATED: The Best Skincare Products for Psoriasis, According to Dermatologists

Phototherapy—exposing the skin to ultraviolet light—can also be helpful in treating genital psoriasis. But this should only be done in a doctor’s office under direct supervision, says Dr. Bridges. “We have to be even more careful than usual, because you can get a burn more easily in areas that aren’t generally exposed to the sun,” she says.

If people have psoriasis in the genital area as well as elsewhere from head to toe, a systemic treatment—like an oral or injectable medication that targets the immune system—may be a better way to keep flares under control.

Sometimes, however, addressing a person’s skin symptoms is only part of the treatment regimen. People with psoriasis have higher rates of other diseases, including diabetes, high blood pressure, and heart disease. It’s important for doctors to address these issues with their patients and encourage them to take steps—like following a healthy diet and getting regular exercise—to reduce these risks.

And, of course, there’s the mental and emotional aspect to psoriasis, genital or otherwise. It’s not uncommon to also experience anxiety and depression when you have psoriasis, and talking with a mental health professional may also be an important part of managing your disease.

Get more on psoriasis here.