Warning: Descriptions of some monkeypox symptoms in this story are graphic. The man in this story also talks about the toll of monkeypox on his mental health. If you or someone you know is experiencing a mental health crisis, call 988 for help.
AUSTIN (KXAN) — An Austin man said the pain caused by monkeypox was so excruciating, he had to reach out to a crisis line for mental health support. On a scale of one to 10, he said the pain was a 10.
The man, who did not want his identity used for medical privacy purposes, said he was exposed to someone with monkeypox earlier this month. He reached out to Austin Public Health for help after the Fourth of July holiday weekend.
“I was able to actually get vaccinated because I had a known exposure,” he said.
While the Centers for Disease Control and Prevention recommends people with known exposure get vaccinated — because it may reduce or prevent symptoms — it came too late in this case. The Austin man said a couple days later he was running a fever, and a few days after that, the lesions started.
“That Sunday I started to get a small spot on my hand, and I started to just like monitor it,” he said. “And then it became clear on the 12th that I had monkeypox. I had really bad rectal pain. Where, you know, I wasn’t able to sleep. I was in constant pain and constant pressure. And then I ended up going to the ER to try to get some relief.”
That’s when he started to hit roadblocks. Even though he would later have a confirmed case of monkeypox, the man said he was diagnosed incorrectly at the emergency room, and that the ER wouldn’t test him. He called around to clinics and providers and found many were also not prepared to test.
“It’s really hard to get tested for monkeypox in Austin,” he said. “That’s because providers aren’t stepping up.”
An Austin Public Health spokesperson said there are two scenarios where someone should be tested: If they’re showing symptoms of monkeypox or after being in close contact with someone who has monkeypox. In this Austin attorney’s case, both applied.
“We are recommending right now that people reach out to their health care provider, if they have one,” William Malm, the public information specialist for APH, said. For people who do not have a health care provider, APH is asking you call its nurse line at 512-972-5560.
But the Austin patient said he struggled to find a provider that was prepared to test him. When he finally was able to get a test, it took four days to get it back, he said.
“I think the number that they’re reporting is much, much lower than the number of actual cases and that’s what’s scary,” he said. “And it’s just because the testing is so slow.”
APH said after a provider or clinic does a test, it would be sent to APH, and they would bump it up to the state for an approval process. Once the specimen clears that approval process, the state does presumptive testing.
After that, it’s the CDC who puts out official confirmed cases of monkeypox, though that full process can take days, if not weeks. APH has put out monkeypox testing requirements and information for providers on its website.
“While you’re waiting for the results, please stay home and quarantine,” Malm said. “We want to try to limit the spread of this as much as possible.”
Back to the Austin patient, he said not only was it difficult to find a provider to test him, it was also difficult to get treatment.
“I’ve lost 15 pounds because I’ve just been trying to avoid having bowel movements,” he said. “Not to be graphic, but it’s extremely bloody. Bowel movements are extremely bloody, which, you know, is scary.”
The CDC put out new guidance last month which detailed U.S. patients reporting pain in or around the anus and rectum (including rectal bleeding) or the feeling of needing a bowel movement even though the bowels are empty. Another monkeypox patient in Texas said he also had a constant headache and that his lymph nodes were “swollen like a frog.”
“The pain and tenderness was constant,” Luke Shannahan told KXAN’s sister station, KXAS. “It’s like if someone took a ball of needles and kept on stabbing you with it.”
Despite excruciating symptoms, including rectal pain and bleeding, the Austin man we spoke to said he wasn’t able to get TPOXX, the FDA-approved treatment for smallpox which is also being used for monkeypox. That same difficulty is being reported around the nation, as was highlighted by NPR this week.
“We are receiving doses of TPOXX,” Malm said. He said APH is working to provide doses of the treatment both to people who have monkeypox and people who have contact with someone who does.
The Austin patient we spoke to said that hasn’t been his experience, though a healthcare provider told him they would try and get him on the treatment last week.
“I haven’t heard anything and at this point, my symptoms are going downhill, but I won’t get to be on TPOXX,” he said.
“It’s a rather arduous process, because it is a study technically, and so a lot of paperwork has to be done,” Dr. Jan Patterson, a professor of medicine and infectious diseases at UT Health San Antonio, and a member of the Texas Medical Association’s Council on Public Health, said.
She recommended people experiencing pain use anti-inflammatory pain medications such as Ibuprofen, or get a prescription for narcotic pain medications if the pain is severe. For rectal lesions, Patterson recommended stool softener and for pain in urination, bladder anesthetic (such as Pyridium).
Patterson also said sitting in a warm sitz bath could help reduce the pain of the lesions, something the Austin man we spoke to said was effective for his symptoms.