Lesions, headaches, debilitating pain: Gay men with monkeypox share their stories

Lesions, headaches, debilitating pain: Gay men with monkeypox share their stories

Even as Covid-19 restrictions have loosened, for many gay men, an uninvited guest called monkeypox has threatened to spoil long-anticipated festivities.

Of the 6,924 confirmed monkeypox cases in the global outbreak, the vast majority have occurred among gay, bisexual and other men who have sex with men, or MSM, various health authorities report. Skin-to-skin contact during sex, experts assert, has likely been the primary driver of the virus’s global spread thus far. 

“I feel like this is something that’s about to hit pretty hard. It’s on us to look after our own.”

john IN NEW YORK, N.Y.

Epidemiologists have stressed that monkeypox can still transmit among other groups of people, although the risk to non-MSM at this time does remain low

Monkeypox has tended to present relatively mildly during this outbreak and has caused no deaths outside of the 11 African nations in which the virus has become endemic since it was discovered in 1970. Nevertheless, 18 gay men who contracted monkeypox told NBC News how it can cause unsightly and in some cases debilitatingly painful skin lesions — and has left them stuck glumly inside. 

“The thought of a full three-week quarantine is pretty scary,” said John, 32, a New York City tech worker who believes he contracted monkeypox from a guy he hooked up with during a recent trip to Los Angeles for the city’s Pride events. “I’m just feeling disappointed and bummed out. It was a bummer to miss celebrating Pride” in New York.

Harun Tulunay, 35, spent 10 days in a London hospital after contracting monkeypox. The virus caused a large lesion on his nose. Benjamin Ryan

John is among the swiftly expanding group of 560 U.S. residents diagnosed with monkeypox thus far — a figure experts believe is a vast undercount of the true case number, given woefully insufficient testing. California, New York, Illinois and Florida are the states with the highest numbers of confirmed cases.  

Some of the men, like John, who shared their stories about having monkeypox with NBC News asked to only use their first names to protect their medical privacy. Most of the men interviewed expressed a strong sense of duty to draw attention to this new pathogen spreading so concerningly within their community. They also hope to combat stigma against those who contract the virus by giving it a human face.

“I feel like this is something that’s about to hit pretty hard,” John said. “It’s on us to look after our own.”

A worldwide outbreak likely fueled by sexual contact and travel

Epidemiologists believe they have traced the global spread of monkeypox to midspring gatherings of gay men in Western Europe. These parties drew many men from other cities, some of whom then apparently carried the virus back home. The Centers for Disease Control and Prevention reported last month that of the first 17 U.S. cases, 16 were in men who have sex with men, and 14 were in people who between them had traveled to 11 different countries during the three weeks before their symptoms began.

Nearly all the men who spoke with NBC News about having monkeypox said they were fairly certain they could trace their infections back to sexual encounters. Quite a few traveled during the weeks before developing signs of the infection.

Justin, 38, said after returning home May 18 from a two-week European vacation, he became the 14th person in the U.S. and the second in New York City to be diagnosed with monkeypox. He said his case started with a bad fever, which along with symptoms such as swollen lymph nodes, headache, body aches, chills and exhaustion are common monkeypox signs. Soon after, the telltale lesions crept across his body.

Spain Sets Up Monkeypox Testing Site As Cases on The Rise
A medical laboratory technician inactivates suspected monkeypox samples to be PCR tested at the microbiology laboratory of La Paz Hospital on June 6, 2022 in Madrid. Pablo Blazquez Dominguez / Getty Images file

Monkeypox typically has an incubation period of about six to 13 days, but this stretch of time between exposure to the virus and the emergence of symptoms can last as long as three weeks. Researchers have not studied whether the virus transmits asymptomatically; at least in theory, it might, experts say. The period of active lesions, when the virus is most certainly contagious, lasts about two to four weeks, according to the CDC.

Jeff, who’s in his mid-30s and is a university administrator in a mid-Atlantic state, spent a couple of weeks traveling through Europe through early June. He made stops in London, Paris, Amsterdam and Berlin, having sex with multiple partners along the way, he said, including in a bathhouse and a sex club in the German capital.

“There’s hundreds of men in this club,” Jeff said, recalling considerable skin-to-skin contact between patrons. “Obviously, no one’s coming down to wipe down the sling.” 

Anne Rimoin, an epidemiologist at the UCLA Fielding School of Public Health and a leading monkeypox expert, said in reference to the sharing of sex slings, “Given the risk of transmission by fomites — contaminated objects — it’s theoretically possible for monkeypox to be transmitted in this manner.”

Nine days after returning home, Jeff came down with an intense fever and headache.

Peter, 28, said he went to a sex party in a house on Fire Island, a gay beach enclave about two hours from New York City, on June 14 and that out of approximately 15 attendees, he and at least six other men now have monkeypox. 

“I’m pretty sure I know who I got it from,” said Peter, who works in tech in a Rocky Mountain region city, but has been marooned in Seattle in isolation since receiving his monkeypox diagnosis during what he had hoped would be a fun visit to attend the city’s Pride festivities. “Thinking back on it,” he said, “I do remember there being a little hard spot” on that particular man’s penis.

Peter said gay men should be vigilant looking for signs of monkeypox on their bodies and those of their sex partners.

“Don’t be afraid to say something,” he said.

Dealing with a chaotic public health system

Many of the men with monkeypox reported having had extraordinarily frustrating experiences, plagued with dead ends and delays, as they sought to get tested for the virus and work with public health officials to provide names of their recent close contacts. Some saw the clock run out for them or their partners as they attempted to secure scarce doses of the Jynneos vaccine for monkeypox, which research suggests may prevent symptoms of the disease if given within four days of exposure and at least reduce symptoms if given within five to 14 days. Using the vaccine in this way is known as post-exposure prophylaxis, or PEP. 

Mark Hall, 41, a New York nurse practitioner, said he developed his first lesion on June 24 — the Friday of the city’s blockbuster Pride weekend — but thought it was an ingrown hair and didn’t realize that it was probably monkeypox until two days later, after already having attended several Pride events. Despite his urgent and determined efforts beginning that Sunday, he wasn’t able to get tested, receive confirmation that he had the virus and finally start providing names to a health department contact tracer until Thursday, he said.

People lined up outside of Department of Health & Mental Hygiene clinic on June 23, 2022 in New York, as NYC makes vaccines available to residents possibly exposed to monkeypox.
People lined up outside of Department of Health & Mental Hygiene clinic on June 23, 2022 in New York, as NYC makes vaccines available to residents possibly exposed to monkeypox.Tayfun Coskun / Anadolu Agency via Getty Images

Given the vaccine scarcity that is hobbling the nation’s response to the outbreak, only 40% of Hall’s close contacts, he reported, were vaccinated by July 5 and another 6% have vaccination appointments booked for this week. But by now, much of the 14-day window for the vaccine’s use as PEP had closed for his unvaccinated contacts. One of these men already has a presumed case of the virus. 

Like Covid-19 and HIV before it, monkeypox has established an epicenter in New York City, which as of Tuesday had 111 confirmed cases, up from 87 on Friday. 

Hall said he was dismayed to learn that the city’s health department can still only run tests for 10 people per day for orthopoxvirus, the virus family to which monkeypox belongs.

“We knew that Pride was coming up,” he said. “Why were we not increasing testing capacity earlier, knowing this was going to be a problem?”

Michael Lanza, a spokesperson for the New York City Department of Health and Mental Hygiene, said the city is doing as many tests as possible “given national resource constraints.”

“The process for testing a specimen is time intensive and the current test was never designed to be high throughput,” he told NBC News in an email. “We are working with our federal partners, NY State government and commercial labs to see how we can increase capacity, but beginning this week, we will have one commercial laboratory on board to assist with testing demand.”

Rob Short, 29, expressed frustration that he never got a call from public health officials about receiving the vaccine as PEP after he attended a particular gathering in Washington, D.C., in early June. He said he is certain local health authorities consider it a spreader event, because he’s aware of other attendees who have received contact-tracing alerts about it. Getting the vaccine promptly, he said, might have spared him an infection that has sent him into isolation, leaving the personal trainer unable to earn income from teaching group fitness classes.  

For some, isolation isn’t optional. Two weeks ago, the County of Los Angeles Public Health department sent Matt Ford, 30, a court order, which the actor shared with NBC News, to remain isolated until instructed otherwise.

“There’s a conundrum,” said Jennifer Nuzzo, an epidemiologist at Brown University. “We clearly need people to isolate as long as they’re contagious. That is the path to containing this virus and keeping it from becoming entrenched. But we know from many past outbreaks that punitive approaches can backfire, by driving cases underground. For this particular virus, because the length of the isolation period is quite long, it’s particularly burdensome for people to isolate.”

Nuzzo stressed that people with monkeypox may need various forms of support, including income and housing support, to help them make it through isolation. 

Jeff for one has questioned the wisdom behind such strict isolation for a virus that largely seems to require a considerable amount of physical contact to transmit. (Many experts have asserted that if the virus does transmit through the air, it likely requires hours of close contact to do so.) He said he has been in regular contact with a public health officer in his home state who has leveled with him that they’re frankly not totally sure whether it’s safe for him to go out.

The monkeypox treatment

According to the CDC, there are no specific treatments for monkeypox, although there are antivirals that can nevertheless be used in medically vulnerable populations, such as immunocompromised people.

Many of the men who spoke with NBC News said that when they did visit health care facilities, if only to secure a proper diagnosis and out of a sense of obligation to alert public health authorities, they were met with a system that was wholly unprepared for them. With no past experience managing patients with a virus that previously has rarely been seen in the United States, members of emergency departments were confounded over what safety protocols to observe. Men reported being rushed into isolation rooms and left alone for hours, their imaginations drifting to dystopian scenes out of movies like “Contagion” or “E.T.,” as staff clad in personal protective equipment puzzled over best practices. 

Image: Gerald Febles shows monkepox lesions on his hands on July 3, 2022 in New York.
Gerald Febles, 25, shows monkeypox lesions on his hands on July 3, 2022, in New York. Benjamin Ryan / NBC News

Some men said they were sent home with incorrect diagnoses before they finally found a health care provider to diagnose them properly.

“I now know what it felt like to be the first HIV patients many decades ago,” said Alex, 32, a biologist in Washington, D.C., who said he believes he got monkeypox from a gathering of a few dozen OnlyFans creators where they were filming sex scenes with one another. He said he’s heard the event likely led to at least three other cases. 

Alex said when he went to a D.C. hospital with “the worst pain of my life” that the doctors “had no idea what to do — they were on Google, literally.”

Peter said the worst part of his trip to the ER at a Seattle hospital was when another man who had initially been in the same room with Peter walked into the hallway and started speaking with a nurse about Peter’s condition. “She loudly said, ‘Are you s—-ting me?!’” Peter recalled the nurse saying. “It was really horrible to feel that stigmatization, like I was this dirty patient.”

“The fact that these patients are not receiving appropriate and compassionate care demonstrates a real need for better education and training of health care providers, especially those working in sexual health clinics, emergency departments and urgent care centers,” said Dr. Céline Gounder, senior fellow and editor at large for public health for Kaiser Health News. “Not knowing how to test for monkeypox is not an excuse.”

Jeff, however, said he was delighted by the nonjudgmental care he received when he visited his hometown’s ER. 

“I’m so lucky,” he said. “They were respectful. No one didn’t believe me, or was like, ‘Oh, you were out being a ho in Germany? Well, no wonder!’” 

Outside of formal medical care, networks of men with monkeypox have opened up, with men swapping self-care tips through direct messages and social media posts. Ford, for one, recommended soaking in Epsom salt baths. 

Some have become amateur epidemiologists. Short said he and his friends have observed a pattern in which men who engage in receptive anal intercourse tend to get an initial outbreak of sores in the anal region, while the insertive partners get them on their genitals. Meanwhile, epidemiologists have observed that some monkeypox cases in this outbreak are atypical compared with cases in previous contexts in the way they first present as lesions in the genital or perianal areas.

For some, severe pain

According to a recent World Health Organization report, perhaps 10% of monkeypox cases for which there is data in the outbreak have led to hospitalization, either for treatment or isolation purposes. A recent U.K. study found that hospital admissions were due to pain or infection of skin lesions. 

Some of the men who spoke with NBC News said that while their skin lesions may have been rather mild, they have experienced extraordinary pain in their anorectal or genital area, in particular when urinating or defecating.  

“It is the most painful s— you’ll ever take in your life,” Short said. “To the point where I almost passed out.”

For Hall, a lesion in his urethra has left him dreading urinating. “It sort of feels like 1,000 burning knives are trying to come out of my urethra at the same time,” he said.

Image: Gerald Febles on July 3, 2022 in New York. Febles said monkeypox saddled him with agonizing pain all over his body, including lesions in his mouth and on his gums.
Gerald Febles on July 3, 2022 in New York. Febles said monkeypox saddled him with agonizing pain all over his body, including lesions in his mouth and on his gums.Benjamin Ryan / NBC News

New Yorker Gerald Febles, 25, said monkeypox saddled him with harrowing pain all over his body, including lesions in his mouth and on his gums. His lymph nodes in his groin swelled to the size of fists, making it agonizing to do anything but lie down, he said.

“The pain became so unbearable,” Febles said as he waited for hours at Lenox Hill Hospital in Manhattan last week. “Every joint in my body hurts.” 

Ultimately, Febles, who is an employee relations manager for the urgent care company MedRite, was given antibiotics and a single oxycodone pill and sent home with a lidocaine topical solution. His discharge note, which he shared with NBC News, didn’t indicate the morphine prescription written for him. So he went an extra day in extreme pain before he realized the opioid was waiting for him at the pharmacy.

Febles said that after he gave an interview to a local NBC affiliate, he got a call from an infectious disease team at Columbia University, led by Dr. Jason Zucker, about receiving the antiviral tecovirimat on an investigational basis. His lesions have since been clearing up — an effect he attributed to the antiviral. In an email to NBC News, Zucker confirmed he has been prescribing the antiviral to people with monkeypox under what’s known as an expanded access protocol developed by the CDC. 

Harun Tulunay, 35, also spoke last week from the hospital, in his case in London. He had been unable to eat for days due to lesions in his mouth and swelling in the lymph nodes in his neck that was so intense he couldn’t swallow. His left nostril was covered in a purple-black lesion. Like Febles, he said he was experiencing extreme pain all over his body, which physicians were treating with opioids while also giving him tecovirimat.

Tulunay, who is a training and volunteer coordinator at the HIV nonprofit Positively UK and is HIV positive, said he has heard of other Londoners with monkeypox refusing to isolate. He said he hoped that by sharing his ordeal, he could help persuade people to be more cautious. 

“I just want to bring people to their senses,” said Tulunay, who was released from 10 days in the hospital on Monday. “I’ve had the worst three weeks of my life.”

In a press conference Wednesday, Dr. Tedros Ghebreyesus, director general of the World Health Organization, praised people who have been speaking out about their experiences having monkeypox. 

“This is a positive way to break down the stigma about a virus that can affect anyone,” he said.

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