If you experience painful, red, pus-filled bumps on specific areas of your body, you’re probably wondering what in the heck they are, but you don’t exactly want to mention them to anyone, not even your doctor.
Maybe it’s a big zit? Or an ingrown hair?
Call them what you want – zits, lumps, boils, abscesses, pimples, cysts, nodules – but if they occur where skin touches skin, like your armpits, groin, genitals, buttocks or under your breasts, then odds are good you have an autoimmune condition called Hidradenitis suppurativa.
An Introduction to HS
If you go look up the definition of Hidradenitis, you’ll hear something like this from Medscape:
“Hidradenitis suppurativa is a disorder of the terminal follicular epithelium in the apocrine gland–bearing skin. This condition is a chronic disabling disorder that relentlessly progresses, frequently causing keloids, contractures, and immobility.”
Got all that?
A young man with this disease describes it a little more succinctly – “great balls of pus all up in your junk.”
HS is an autoimmune condition that very few people have heard of. Even most doctors haven’t heard of it. Here are some key things you need to know:
- Eruptions tend to be linked to a food sensitivity, but there’s not a universal food trigger; it’s very individual
- HS is not contagious and is not a sexually transmitted disease
- Shaving doesn’t cause it
- Being overweight doesn’t cause it, though it can make it worse
- HS is not acne
- It starts after puberty
- It affects women more than men
- The boils can come and go, singly or in clusters
- Tender lumps can remain under the skin for days to years
- The boils can become open wounds, oozing pus and blood
- If they get infected, they smell
- Scarring of the skin after a lesion heals is common
- Some people only have one affected body part, others have boils in multiple regions
- There are three stages from mild to severe, but not everyone experiences all three.
- In stages II and III, tunnels can develop under the skin. These are called sinus tracts.
- People with HS often have other health issues, like Polycystic Ovarian Syndrome (PCOS), acne, or pilonidal cysts, and they may have other autoimmune conditions
Having HS Takes a Toll
Now that we’ve covered some of the technical aspects, it’s critical to mention that there is often an emotional toll with this disease. The pain of the outbreaks is unbelievable. Then there is the shame, embarrassment, and depression that comes along with it. It affects work, relationships, sex, self-esteem.
As a Functional Medicine doctor, I help people with HS all the time. Here are some of the things I’ve heard from my patients living with HS:
- I can barely get dressed because of the pain.
- I WILL NOT wear tank tops or swimsuits.
- There is nothing sexy about this disease at all.
- I feel disgusting and unlovable.
- I thought I was the only one for years.
- My underarms look like something out of a scary movie.
- I feel like I’m being punished and have thought so many times about suicide.
- I feel my life is over at 29.
There is Hope
After hearing so many heart-breaking stories, it’s easy to understand why it is so important for people to actually know what this is, how to handle it, and that they are not the only ones struggling with this.
I’m on a mission to reach as many people as I can because HS is often misdiagnosed, ignored, or treated with a useless, even harmful approach. Most people are told they just have to learn to live with it. If you have HS, you deserve better.
With Functional Medicine, we have a variety of tools to help us find the root cause of your HS outbreaks. Many people see dramatic improvements – less pain, fewer outbreaks, faster healing times. Some even experience remission of the disease.
If you have been struggling with HS, please, please, please talk to me about your situation. I would be thrilled to share with you everything I know about how to improve or even stop this condition without antibiotics or surgery.
Your location doesn’t matter. I consult with people by video from all over the US.
Photo: Michael Matti