How I'm Getting My Nasty Chronic Skin Disease Under Control

Hidradenitis suppurativa can be managed, and I've found a combination of traditional and natural remedies that make me so much more comfortable.

Hey, hi, how is everyone today? Hopefully y'all are swell and everything is great. I wish I could answer that question with honesty, but most of the time you can't bitch and moan about health problems without looking like a whiny hypochondriac baby. I also find it helps my mood to avoid talking about my health problems too much and keeps me on the PMA: positive mental attitude. Americans are expected to be such bootstrappers that I think many of us just ignore our problems until they are rather unbearable. Thanks to my man Obama (LOVE YOU!) I am able to see a doctor without worrying about four-digit medical bills showing up on my doorstep, and usually collection calls shortly after. This is thanks to Sallie Mae/Navient/The Worst Company That Has Ever Existed (™, all rights reserved).

Nearing the end of my bartendership and in the beginning of my xoVain days, I began to notice a painful bump at the top of my tailbone. It was aggravated by sitting and would come and go with my menstrual cycle, swelling up and calming down like clockwork every 28 days. My very nice doctor informed me that this was a pilonidal cyst and that I was lucky, as it was relatively calm and never infected or purulent. I still may have to have it removed down the line, though.

I also had a very angry bump under each armpit for about two years, which eventually calmed down after I switched to natural deodorant, but was attributed to eczema from artificial nails and nail polish. Steroids and antibiotics did nothing for it.

In addition to these very annoying, sometimes painful and always self-esteem knocking issues, I was also struggling with body acne and hormonal facial acne. I don't know if alcohol and tobacco were contributing factors. I adopted a vegetarian diet, significantly reduced my alcohol consumption and quit smoking cigarettes by my 26th birthday, quit spliffs shortly after, and now generally stick to green-only recreation with a wine, beer or two/three but almost no hard liquor, and my health is more robust. But skin problems charged on.

A healthier lifestyle did not change much. I was very sad and uninsured, and that's really how I got started with DIY beauty and natural remedies: I was broke and unhealthy and needed help. Some methods I still using regularly, others were failed experiments but amazing for learning. Now I'm under the care of a dermatologist and my very awesome primary care doctor, and in combination with some of my natural techniques, I am seeing improvement and am ready to share my story with you.

I was diagnosed with Hidradenitis suppurativa by my derm, with classic symptoms of body acne, cysts and rashes, especially exacerbateted by hormones and sometimes tight clothing (my love). Cysts and lesions appear most often where one has sweat glands, and especially sweat AND hair, which is many undesirable places.

You can't imagine how it has tried to mess with my self-esteem and mood. I have noticed a definite decline in my desire to go out with my friends, go to the beach, defend my title of Chicken Fight Champion of more than two fancy NYC hotel pools, and generally be my loud, outgoing and skimpily dressed self. It has affected my intimacy in a way I never thought possible, and I am not even good at expressing this to my fantastically supportive and loving partner. In a seashell, this SUCKS, and I damned near kept it private, only feeling comfortable with a small number of friends, namely Rachie, Kara, Marci, and a few other xoVeterans.

My experience is that conventional and traditional experience go hand in hand; I didn't see the best results until I combined the methods. Now that I have decided to be open about this to help those of you out there who may be experiencing the same or similar unsightly and confidence killing skin problems. Here are my thoughts on what I've tried.

Spironolactone. A complete godsend. Cystic facial acne greatly reduced—this cycle I only got two tiny zits. My usually blackhead-covered nose and sebaceous filament-carpeted chin are freaking flawless now. I looked in a 5x mirror from Simplehuman and was actually HAPPY. With less acne, I have less to pick, not only on my face but arms, back, thighs, bikini—everywhere!

Minocycline. Meh. Super meh. I did this frankly to listen to my doctor and to quell a very angry bout of chest acne, which she suspected was bacterial in origin. I only took it for two months and was not really into it.

Clindamycin. I still use this once a day, but it gave me other problems as it's basically hand sanitizer with antibiotics in it. It burned and dried out my skin, but I use it after shaving and on active breakout areas because it does help things clear up faster

Hibiclens. Yuck. it smells terrible and is super drying, but I found a good hack that allows me to use it 3-4 times per week and also to shave with it: mix with a silicone free hair conditioner.

Epsom salt baths 2x per week. This has been so crucial, especially with the pain I get from the tailbone cyst. It dries up my skin and calms down breakouts, and I also notice less aches and pains, which I am super-prone to. This is a non-negotiable part of my life now, as I instantly get a breakout and sore wrists if I skip.

Turmeric. In pills (DIY of course), food, drinks, and creams and spot creams. Turmeric has been a godsend. Another essential part of my care routine, if I skip this, I pay for it.

Vitamin D. I take a 2000 IU daily as per my doctor's instruction. In every blood test, I am low. I try to get 45 minutes of sun 3x per week with a low SPF, at her recommendation, and both help me with period cramps and PMS.

Probiotics. This I initially took to prep and protect my stomach from the effects of a daily antibiotic regimen, which it did wonderfully. I continued after feeling like it must be in part responsible for my newly awesome skin, as many recommend this for acne and inflammation sufferers.

Omega-3. Another doc-reccomended supplement, I have seen an enormous difference and take a sometimes chia sometimes flax based pill or eat either daily.

I won't lie: it's been a shitty ride, but I think even writing about it has helped me greatly. It feels cathartic to get this out there. I hope not many of you have this inflammatory shitstorm, but I hope those of you that do can feel comfortable asking me questions and sharing your story. I hope I can get the nerve to get this cyst removed (though I am terrified of recurrence) and that my treatments work for the long term.

  • Do any of you want to share your skin-condition drama?
  • Any tips for inflammatory diseases you want to share?

Photos: Darnell Scott