When it comes to mistaking one condition for another, hidradenitis suppurativa (HS) is a standout. The chronic, inflammatory skin disease can take around 10 years and over five doctor’s visits to diagnose, according to a study in the Journal of the American Academy of Dermatology, and along the way, symptoms can worsen significantly and even lead to multiple ER visits.
What Is Hidradenitis Suppurativa?
Affecting about 1 to 4 percent of people worldwide, HS starts with blocked hair follicles that appear as lumps or nodules where skin rubs together and there are ample sweat glands—armpits, groin, genital area, breasts, and buttocks.
Symptoms can range from mild to severe, and the condition is classified in three stages depending on that severity, according to Tien Nguyen, MD, dermatologist at MemorialCare Orange Coast Medical Center in Fountain Valley, California. At its worst—stage three—lumps turn into sores and abscesses that are connected beneath the skin by “tunnels,” which are like wormholes that come with scarring of the skin and pain. And while this stage isn’t common, when it does occur, it tends to disrupt your life in significant ways, including causing emotional distress, Dr. Nguyen says. If you’re spending years waiting for answers and not treating your HS correctly, you could be progressing toward that stage—many times, unnecessarily.
Why It’s Hard to Diagnosis
If the condition seems so pronounced and is causing pain and anxiety, why does it take years to get a proper diagnosis? There are several factors that can build on top of each other.
Diagnosis can be delayed if you’re feeling too embarrassed to get checked out, which can be the case for men, says dermatologist Adam Mamelak, MD, founder of Sanova Dermatology in Austin, Texas. “In general, men tend not to see doctors as much as women, and will wait longer to seek help for a skin concern,” he says. “The nature of the disease and its predilection for the snout and buttocks often makes men self-conscious about their skin and hesitant to bring it to anyone’s attention.”
Lack of awareness among doctors and other health care providers is another major factor, he says. While dermatologists are very familiar with the condition, other specialties or primary care physicians are usually much less aware and can diagnose the problem as boils, severe acne, inflamed cysts, or a skin infection. That can lead to treatments like antibiotics and even surgery. Both do nothing to help treat the underlying condition, says Dr. Nguyen. When surgical procedures are used to cut out an abscess, it tends to make the condition worse because that tends to increase the number of lesions afterward, he says.
Trying lifestyle changes can also create delays. “In some cases, doctors believe weight loss will cure the issue, which isn’t true,” he says. “That’s one more avenue that will add time onto the process, sometimes years, and in the meantime, your HS might be worsening.”
What Can Happen While You Wait
HS can stay a mild condition for years and even decades, but there’s no guarantee you can remain in stage one for the long haul. If treatment is lacking, it can progress toward or into stages two and three. That comes with potentially negative changes to both physical and mental health.
“On its own, HS can have an impact on all areas of your life, from your job to your social relationships,” he adds. “If the condition gets worse, and especially if you have or develop other health issues and you continue to be misdiagnosed, it can have a major emotional impact.” Sixty percent of HS patients reported very or extremely large quality of life difficulties, according to a study published in Frontiers in Medicine. When you couple this with social stigma, intense pain, on-going, foul-smelling discharge from lesions, and work disability—all issues associated with HS—it isn’t surprising that HS is much more problematic than many other dermatological conditions.
What’s more: all of that can increase your risk for depression and anxiety, which often happens in people with HS, according to a report published in JAMA Dermatology. While this is just hidradenitis suppurativa’s effect on your mental health, your physical health can also take some hits.
It’s possible that a bacterial infection on the skin can develop, creating scars that restrict movement, and increase risk for developing squamous cell carcinoma—a skin cancer that’s especially prevalent in men who’ve had HS for many years on their genitals or around their anus . All of this can be even more challenging if you have another chronic condition as well, which Dr. Nguyen says is common. That can include back pain, inflammatory bowel disease, rheumatoid arthritis, and other issues related to inflammation.
Get the Right Help
An important way to cut down on the amount of time it takes for diagnosis is to ask for a referral to a dermatologist, suggests Dr. Mamelak. Providers in that specialty are very familiar with HS, he says, particularly when lumps and lesions are in areas like the armpits and groin area. The American Academy of Dermatology Association lists these symptoms, which should prompt a request for a dermatologist appointment:
- Lumps approximately the size of marbles or peas just under the skin
- Pain and tenderness on the lumps and/or around them
- Areas where the lumps have broken open and have pus leaking
- Nodules or lumps that are starting to merge together
- Blackhead-like spots that often appear in twos
Most of all, Dr. Mamelak adds, don’t wait until the symptoms are severe. It may turn out that you actually don’t have HS, but it’s better to be safe than suffering.
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