My Hidradenitis Q&A
Social media can be horrible, but it also can be great because it has helped connect so many Hidradenitis Warriors from around the world! Using Instagram has been great for me and connecting with fellow individuals that have to live with HS. I get a lot of similar questions about HS, so I thought it would be helpful to do an HS Q&A so people can get the answers they’re looking for quickly.
What were my first symptoms of HS?
When I was in 10th grade, I would get what I thought were pimples or ingrown hairs in my groin area. Similar painful boil-like pimples started developing in my armpit areas during my late teens/early 20s.
How did you find out it was HS?
From the time of my first draining in a walk-in med clinic to the time I first heard the term “Hidradenitis Suppurativa,” it was over 4 years. The pain from my armpits was too much and I finally went to a Primary Care Physician instead of just a walk-in med clinic. The PCP then made me see a general surgeon and it was the general surgeon that mentioned the name “Hidradenitis Suppurativa.” The general surgeon mentioned it, but never really explained it or that it’s life-long. You might see this doctor referred to as “Dr. Quack” in my other posts.
What stage HS are you currently?
I’d say I’m a stage 3 in remission. I don’t know really because am I technically in remission if I still get outbreaks? I’d say I’m a stage 3 in remission, but back to stage 1.
How did you lessen your outbreaks?
I believe a mixture of surgery (not yours, Dr. Quack), diet, weight-loss, and being put on a certain medication by my endocrinologist.
What diet do you follow?
Since my biggest triggers are gluten and sugar, I personally found a lot of success with the keto diet. Not only does it cut out my triggers, but I’ve lost over 60lbs on it and I think that also helps towards my lessening flares. The keto diet might not work for other HS warriors though, since it’s high in fats and processed meats and dairy and nightshades.
Do you take medication for your HS?
My endocrinologist has me on Metformin and Spironolactone daily. I have Polycystic Ovarian Syndrome and she believes the PCOS hormonal imbalance plays a huge role in my Hidradenitis. She’s trying to regulate my PCOS in hopes of regulating the HS.
What are your triggers?
My biggest triggers are gluten and sugar. I also get bad outbreaks before and during menstruation and when my anxiety, stress, and depression levels are up.
What are other HS triggers?
- Processed sugars
- Processed fats
- Red Meat
- White potatoes
- Red spices: Cayenne pepper, chili pepper, red pepper, and paprika
- Jalapeno, banana, and habanero peppers
What do you feel during a flare?
Honestly? The burning passion of 1,000 suns. Haha, but really, sometimes the boil will burn, sting, itch, or get caught on clothing, so it can be quite painful and annoying. Sometimes I won’t even see the boil and it will just feel like a painfully huge buildup of pressure under my skin. Besides the actual flare itself, I also get really tired and sometimes nauseous. I don’t know if it makes any sense to anyone else, but during groin and butt flares, my lower half just feels like a tightness like it’s trying to make sure my butt doesn’t fall off. Hearing it out loud, I 100% now know that makes no sense, but hey, you’re the one that asked!
Seriously, what is your deal with Vicks VapoRub?
I can’t stress enough that I’m not a doctor so this is just a personal preference, but I love using Vicks on my unopened flares. For me, the menthol helps cool the flare and sometimes can even help the flare come to a head so you get relief from the pressure under the skin. Once again, I’m not a doctor, but I just use a tiny little baby dab of it. I told my endocrinologist I do this and she also told me that Vicks is great if you have foot fungus, so I mean, the more you knowwwwwwwwwww. ♪
If you like this HS Q&A style and have a question that I didn’t answer, make sure to comment or send it to me here on HSDisease.com, or you can email it to email@example.com and I might do another HS Q&A soon!
- Ultraviolet by Stiff Dylans
- 3am by Kate Nash
- Sugar Mouse by Oh, Atoms
- My Trigger by Miike Snow
- Make Some Noise by Beastie Boys
How has your HS affected your relationships with friends and family?