103: Hidradenitis Suppurativa: The Tip That Stopped My Flares

If you've ever heard of Hidradenitis Suppurativa, then you know exactly how awful this condition is.

For me, I initially thought it was some sort of cancer because of the painful, swollen, lump I developing in my armpit.

As I did more research, I came to realize that even now… a decade later… not much is known about what causes HS.

But if you have it, this issue can feel like a wrecking ball smashing into your life!

Fortunately, I got a tip from a colleague that changed everything for me and put my Hidradenitis Suppurativa into remission.

In the spirit of sharing, I want to pass along this tip to you so in the event that it could also be helpful for you. I'm not guaranteeing that it will work for every case, but if it helps even one person, then it makes sharing this worth it.

Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android

In this episode:

• What is Hidradenitis Suppurativa? (also known as HS)
• My experience living with Hidradenitis Suppurativa
• What areas are impacted by HS flares?
• Conventional + limited alternative treatment options
• What put my HS into remission (thanks to a tip that was my game changer)

Quotes:

Doctors still don't know what drives Hidradenitis Suppurativa. Inflammation plays a role and may be considered a form of auto-inflammation.

The Mayo Clinic lists armpits, groin, buttocks, and, breasts as known “hot spot” areas. But it can appear in other areas, even on your face!

Hidradenitis Suppurativa: The Tip That Stopped My Flares [FULL TRANSCRIPT]

Welcome back to episode #103 of the Healthy Skin Show!

In today's episode, I'm talking about a skin condition called Hidradenitis Suppurativa.

It kind of sounds like this mythical creature that's going to burst out of a bog and attack you, but it's not.

Hidradenitis Suppurativa is a skin condition that I've personally dealt with. Because Hidradenitis Suppurativa is quite a mouthful, we'll just call it HS for short.

Flashback to 2010… it's two weeks before my wedding and I felt like everything was in a state of complete chaos.

I woke up to discover that one of my armpits was completely swollen. It felt incredibly inflamed, hot and painful to the touch.

And the scariest part of all was that I had this large large lump!

Because it's located in my armpit, the first thing I think is, “Oh my gosh, I'm supposed to get married in two weeks. Is this like breast cancer or something?”

I was seriously freaking out. My dad who is a doctor didn't think that it was cancer and encouraged me to see my dermatologist.

Thankfully I did not have any sort of cancerous lesion, but it turned out instead to be Hidradenitis Suppurativa!

My dermatologist put me on the antibiotic called Keflex. Frankly, I didn't give it another thought because the symptoms subsided and the lump went away.

But five years later it came back with a vengeance.

It started out coming back about every other month, then it was every month, and then every three weeks.

What is Hidradenitis Suppurativa?

I started to search online for “what is Hidradenitis Suppurativa?“.

And I'll be honest with you… I was horrified by the photos that I saw and what I learned.

I had no idea that this condition could progress only to become more serious. It causes the area to become disfigured and lumpy. But the physical pain can become incredibly unbearable and make it difficult to function and move.

As it worsens, it can require surgery because of these tunnels that form under the skin.

I was so scared.

Plus on top of it, I was taking antibiotics so often. My sister who is an herbalist and an acupuncturist had created a formula for me that was helpful to some degree, but nothing really helped.

To be honest with you, doctors still don't know what's actually driving this particular type of condition. We know that inflammation plays a significant role.

I've also found some research demonstrating upregulation of “…IL-1β and IL-17, which are pivotal cytokines in autoinflammation, [and] have been demonstrated in HS lesional skin, suggesting that this disease has a predominantly autoinflammatory nature.“(1)

However, the real reason(s) driving Hidradenitis Suppurative remains a mystery.

The lesions can form, break open, and cause tunneling under the skin in areas where skin rubs together. The Mayo Clinic lists armpits, groin, buttocks, and, breasts as known “hot spot” areas.(2)

But it can appear in other areas, even on your face! (More about that in a moment.)

Hidradenitis Suppurativa Treatment Options

My first question to the dermatologist is “how do I manage Hidradenitis Suppurativa so it doesn't come back?”

Unfortunately, that's trickier than you'd think.

With HS, it's critical to take care of your skin!

You can't wear anything tight that would rub.(3)

You need to let everything air out especially if you've gotten sweating (so breathable fabrics are a must).

Sometimes soaks can help the area or using special salves and creams.(3)

Anyone dealing with HS will basically try anything to stave off a flare… and I don't blame them. It is incredibly painful!

My own flares would come out of nowhere and if I didn't start immediately on antibiotics, I'd be in horrible pain by the end of the day.

I would initially feel like I was being stabbed repeatedly inside my flesh with little needles. It was absolutely awful!

Medication options tend to be anti-inflammatory and/or antibiotic in nature when a flare comes on.

Some doctors might even prescribe corticosteroids, other anti-inflammatory drugs, or even something like Humira. Others may recommend birth control pills because there may be a hormonal component to HS.(3)

There currently doesn't appear to be a lot of great “alternative” options. I've seen some people try the Autoimmune Paleo Protocol and other anti-inflammatory diets in hopes that that will also reduce internal inflammation. The results are all over the place and there's no guarantee that it will ultimately stop the progression of this problem.

I do believe it best to clean up your diet and better manage your stress levels to help quell inflammation within.

And you may have some luck seeking help from Chinese medicine and herbal/botanical formulas customized for your specific concerns. As I shared, my sister made me an herbal tincture that was pretty darn helpful in staving off a flare.

While my own case of HS was at a moderate level, severe progression may require surgery.(3) Ultimately, I didn't want to keep on managing HS, nor did I like the prospect of a potential surgery in my future.

I'd tried some of the natural options out there, but it just wasn't enough. Fortunately, one tip changed everything for me because I don't actually get HS anymore!

What Stopped My Hidradenitis Suppurativa Flares

So flash forward a number of months of taking antibiotics and being incredibly frustrated.

I was sitting at a table in Boulder, Colorado with a group of colleagues. During the conversation, I happened to mention that I was taking antibiotics for a particular skin condition that had a name that sounded like a monster.

It just so happened that the person sitting next to me had had the same exact condition!

She'd had Hidradenitis Suppurativa on her face and it had really become physically and emotionally taxing.

One of her doctors asked her if she'd be willing to try laser hair removal. At that point, she was willing to do basically anything to get it to stop. Fortunately, it worked!

I too had been through so much and felt so frustrated and scared of what was happening that I was willing to do basically anything… even to go through an expensive multiple laser treatment procedure.

I went back to my dermatologist and discussed this option with her. She said that they had some success with laser hair removal, but it wasn't covered by insurance.

It was not fun. It was painful and felt like somebody was snapping rubber bands repeatedly into my armpits!

But you know what? It ended up being worth it from a quality of life perspective.

With each monthly treatment, the flares got fewer and less intense. Eventually, the Hidradenitis Suppurativa flares completely stopped.

I occasionally get that pinprick feeling, but it'll go away after a couple of minutes without any other symptoms.

Fortunately, there seems to be a bit more in the medical literature now about the use of laser hair removal for hidradenitis suppurativa! (4) And some interesting stats of improvement specific to what stage of HS you're in and the location of the lesions.(5)

Just to be uber clear — I am not suggesting that this is a fix for every single person who has HS.

What worked for me may not be appropriate for you (or might not work).

But I would probably still be suffering now had that colleague never shared this tip with me.

At the least, I highly recommend that you discussed the option with your dermatologist to find out if it's appropriate and worthwhile for you. Especially given that laser hair removal for HS more than likely won't be covered by insurance.

While I talk about a lot of different skin conditions here on the Healthy Skin Show, Hidradenitis Supporutiva is a nightmare.

If you know somebody who's dealing with HS, please give them some serious love and support especially when they're going through a flare. It can be incredibly debilitating and painful.

As I come across more research and information on this particular topic, I promise to share it because I know how powerful information can be to drastically improve the quality of your life.

I felt that it was necessary and important to share my experience with Hidradenitis Suppurativa because that's what I always ask you to do, right? To share the episodes and articles here with other people in our community so they can benefit too!

Got experience living with HS? I'd love to hear about it!

Leave questions and comments below!

And before we part ways for the day, I just want to remind you that I would really appreciate it if you could take a moment head on over to your podcast platform of choice rate and review the show.

Thank you so much for joining me and I'll see you in the next episode!

REFERENCES

1. https://www.jacionline.org/article/S0091-6749(18)30134-9/fulltext
2. https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
3. https://my.clevelandclinic.org/health/diseases/17716-hidradenitis-suppurativa/management-and-treatment
4. http://www.jcasonline.com/article.asp?issn=0974-2077;year=2019;volume=12;issue=1;spage=8;epage=16;aulast=Aleem
5. https://www.dermatologytimes.com/hidradenitis-suppurativa/nonablative-technologies-and-hs-patient