Living with HS- My Secret Pain

I have Hidradentitis Suppurativa. In short, we call it HS. It causes you to get painful bumps under your skin in the hair roots near some of your sweat glands. It is a lesser known autoimmune disease, but is starting to pop up in more people. I am starting to believe there are some environmental triggers to it, but I will get into it later. If this is TMI, please stop reading now.

When I first had symptoms of HS, I had thought I had a large “pimple” on my inner thigh, under my skin. I stabbed at it for days and it eventually burst under my skin causing a very large swollen area. I know now that you should never “pop” your bumps as that drainage can get into your bloodstream and make you sick.

Now I live with the reality of having usually at least one painful bump at all times, and sometimes more. Occasionally they will burst on the surface of the skin on their own, and I can have an open wound for days/weeks on end. I have been asked if it is contagious (no), if it is an STD because it occurs close to my groin area (no),and many other questions. It is a very embarrassing disease and sometimes wearing a swimsuit can expose me to comments. I cannot wear jeans or traditional non spandex type pants. The friction causes more of an outbreak. Thank God for leggings.

I want to finally speak out to the world about this disease because I believe more and more women are getting it, and I want it to be understood. It can be very emotional and confusing when you discover that you have it. I honestly did not know what I had for about 4 years after my first onset of symptoms and I was very ashamed. To this day, I am ashamed that I have such an outwardly embarrassing disease. When I had a tumor on my optic nerve and had to have a crainiotomy to remove it, it was scary, but almost “cool” in the same sense that certain scars are cool because of the story behind them. I survived my skull being cut open, but HS is different. I didn’t want anyone to know about it.

Traditionally this is a disease that occurs when you are obese and/or a heavy smoker. I have never smoked and am not overweight by any means. My dermatologist said I am the first person she has seen with HS who isn’t an either of those things. The disease can also be genetic and I 100% believe mine is now. I am hoping to meet with a genetic counselor soon to see if there are any test or genetic markers that have been found for it.

I believe hormones are a triggor for this disease. If you google “mirena and HS” you will see articles where woman after woman, in the comment sections, suggest their HS was triggered by the Mirena. I will not be surprised if sometime in the future, scientists link the two. I had never had HS before I had a Mirena. To top that off, I had quit traditional birth control after developing a fibroadanoma breast tumor. My doctor told me not take traditional birth control anymore. Apparently even though she said the Mirena was okay, it was not. For the last 6 years, I have not been able to take ANY birth control. I would also not be surprised if the non cancerous tumor I had on my optic nerve was also triggered by hormones. I have a pre-teen daughter, and if this disease is genetic AND triggered by hormones, I have no idea how I will cross the birth control bridge talk when she gets older.

Another reason to believe I am super sensitive to hormones is that dairy triggers my HS really badly. I can eat cheese here and there but ice cream and heavy cream really do me in. I have done a lot of studying about food triggers lately and found some evidence that certain foods can trigger many symptoms for those suffering from autoimmune diseases. Lectins seems to be a key trigger and Casein (from milk) is a big lectin. Gluten also is. I cannot say I am an expert my any means, but this is a really good article that I have read. https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/

I want to end this article by saying how blessed I am. The disease could be much worse and could get much worse. For now, it is manageable and I am very lucky that is is. Here is a link to an article about a contestant on American Idol who has it much worse than I do. https://hopeforhs.org/will-hs-warrior-jackson-gillies-be-the-next-american-idol/ I think it is awesome he is willing to speak about it!

Much love, Liz

4 comments

  1. Laurie says:

    God bless you for overcoming embarrassment of this topic and sharing it with others! You never know who it might help. It’s very well written – so proud of you, Liz!

  2. Makala says:

    The iud I have is literally letting me have a life but I have been getting random skin infections since getting it. I don’t wear certain types of clothes to keep my skin less irritated…..I have endo and chronic pain so I keep telling myself it’s better to have skin problems then be stuck on the couch all the time. I need look up this HS now. This is why I garden so much. Letting the earth heal me I hope…. thank you for sharing this

    • lizpalmer says:

      I am sorry I just saw your comment! I am curious to know what you figured out with your research. HS has stages and mine used to be fairly mild. They still are compared to some other people’s, but they are definitely getting worse for me. I am sorry to hear of the endo and chronic pain! Gosh life is hard as were getting older. Gardening is such a great idea!! So far, I have been eating according to “the plant paradox” for the most part and it is helping.

  3. Nancy Wagner says:

    Great information others may suffer from the same thing and not even know it. Thank you for sharing. Hugs and prayers foe you and your daughter.

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