I’ve decided to write about the disease that I have had since I was 15. The one that has tormented me and left me scarred mentally, emotionally, and physically. I’ve just recently begun trying to open up about the condition. Today I wrote a blog on shame and one of the ways out of shame that I had researched and read about was to open up about it. This disease causes immense shame, depression, and anxiety due to the ongoing stigmatization of the disease.
What is Inverse Acne you might be asking? It is formally known as Hidradenitis Supporativa (HS). HS is an inflammatory disease which causes lesions that typically form in areas where skin folds exist and where hair grows more significantly. The most common places for it to occur are in armpits, groin, under women’s breasts, and the anal areas. It can occur in almost any area on the body however. It can be hereditary, and it was handed down to me. As with most diseases, obesity and smoking are linked to worsening HS conditions.
The disease typically starts around puberty and thus has been thought to have some sort of hormonal linkage. I myself started seeing flare ups around the age of 15. I remember when I finally got the courage to ask my mother about it, she told me she too got them, and basically that it would go away. I wasn’t provided with any more information on the condition or ways to treat it. I know now this is because my mother has never been provided with that either. It is hard to get a correct diagnosis with HS and even harder to find someone who knows enough about it to provide effective treatment options. Many times it goes undiagnosed because patients are too ashamed to mention it.
There are 3 stages to HS. Stage I is a single bump with no sinus tracts. Stage II is more than one bump but little tunneling. Stage III is multiple bumps with a lot of sinus tracts and scars involving an entire area of the body. People can be in different stages at different times in their life and they can be in different stages in different areas on their body. They may have for example stage I in their armpits but stage III in their groin area.
There are a couple myths concerning HS which I will mention:
1. You have HS because you are overweight. People of all sizes have HS. Weight can be a factor in worsening HS flares since it creates more areas on the body for skin folds to rub but it does not cause HS. I lost over 100 lbs once and I did see a decrease in flares but it did not get rid of the condition. I still had flares when I was my optimal weight.
2. You have an STD. HS is NOT an STD. It is NOT contagious. Because HS regularly appears in the groin and genital area it can cause fear that it will be mistaken for an STD. Because of the area/location for which these occur (in the groin) area it can create poor body image and make sexual relationships challenging.
3. You’re dirty. Cleanliness can help manage HS but it does not cause HS. Because it is a skin condition staying clean can help the healing process but if you have HS it does not mean you are dirty.
HS is an inflammatory disease and there is no cure. Some patients go into remission in their later years, my mom however is 67 and is still dealing with the condition. Therefore, I do not hold too much hope for remission.
There are a plethora of treatment options out there and from my over 20 years of experience very few are effective. The issue with HS is that each person reacts differently to the various treatment options. What is effective for one person is not necessarily effective for others. For years my dermatologist had me on various doses of low grade antibiotics, such as moxifloxacin and doxycycline. Neither of which did much to prevent or lesson issues concerning flare ups. I was once told by an ER nurse who had to lance one of my lesions to be sure to change my wash clothes and towels after every use. Which is a practice I have continued to follow for the last 10 years. Again not by way of helping much.
Over the years I have had several areas that have had to be lanced including my stomach and back. Around 2015, I under went my first surgery for HS. What can happen with HS is the infection if it goes away and continues to resurface in the same area is it can eventually cause tracts of infection that form underneath the skin. When it gets to this point there are very few options of treating it outside of surgically excising the infected area and enough of the surrounding tissue in hopes of preventing its reoccurrence. The area I had my first surgery on was my stomach. The area directly below my belly button. I got flare ups in that area due to my weight and my skin overlapping in that area causing friction with my clothing.
Outside of weight, friction, and tight clothing, other things that can cause flares are excessive heat and sweating. Stress is also known to cause flares as well as some people report food as another flaring agent.
When I moved to Florida in 2016, I didn’t immediately notice a difference in my HS. Then around the beginning of 2017, I decided to really do something about my weight. I started walking very vigorously every day, sometimes multiple times a day. With that I did manage to lose 20 pounds. But between the heat and the weight causing friction in my groin area I developed several lesions which kept reoccurring in that area. Never really knowing how to treat them in the past I continued to exercise and just hoped they would go away.
It didn’t. It continued to get worse. In 2019, I ended up having groin surgery where about a 5 inch incision was made along my groin and labia majora. The whole process was extremely embarrassing and emotionally painful. Having to go to doctors and spread em’ and allow for the area of your body that you are most shamed of, to be seen by others, by strangers. As a female, this is one area you truly don’t want to have to be dissected and scarred. I would have gladly taken back the 20 pounds I lost if I could have gone back and prevented the lesions from originally forming. That is the rub, not intending to be a pun, but that is it, you want to lose weight to help with body image issues and to help prevent flares but exercise can be challenging as it can cause flare ups. I am fortunate that I have a swimming pool. Swimming seems to be one of the few activities that I can do that don’t cause flares.
After my last surgery, I started seeking additional help and treatment options. I found a doctor in Miami who specializes in HS. I also found a couple of different facebook communities. Between the two I have learned several things I have been implementing over the last 9 months, with some levels of success.
I’ve learned that some of my flare up triggers do come from food, stress, being overweight, and heat/excessive sweating/rubbing. I’ve begun incorporating swimming into my life 3 to 5 times a week (depending on weather) to try to continue work on getting myself into a healthy weight. I now pay someone to do my lawn and landscaping work. I enjoy doing that work myself but with Florida humidity I’ve become too afraid that it could cause new flares. I’ve also changed my diet completely. The items they mentioned as general culprits are dairy, night shades (such as peppers and tomatoes), and grains. I have eliminated most of these almost entirely, with the exception of my occasional relapses with grains. I’ve been trying to practice mindfulness and doing yoga daily to help manage my stress. When I get stress not only does it trigger flares but I am prone to stress eating and when this occurs I typically eat foods known to cause flares therefore, doubling my chances of flare ups.
When I do get a flare up, that experience in itself is stressful. There is a lot of fear that it is going to be the flare that is going to become problematic, the new lesion that will put me back in the surgeons office to have additional parts of my body carved out. More scars. Because of this fear I am generally very hard on myself when I have flares. I blame myself, like, I shouldn’t have eaten that, or I am not doing a good enough job practicing mindfulness. I need to learn to have more compassion with myself. Even though I do fall short in some of these areas, this is a disease, and even if I managed everything perfectly I would still get occasional flares.
Here is my current regimen I am following to try to prevent flares using information I’ve gathered either from the HS support groups or my doctor. This is in addition to the diet, swimming, and avoidance of excessive humidity/walking that I previously mentioned. Every morning I take a daily probiotic, 50 mg tablet of zinc, a multivitamin, and 500 mg of Turmeric. I take a hot as I can stand it bath for 20 minutes, 4 to 5 times a week. In that bath I put 12 drops of oregano extract oil, 12 drops of tea tree oil, and lots of epsom salts. All of these are known for treating inflammation. The result is I smell like Italian food. On days I don’t bath, I shower with my fresh wash cloth using the recommended soap, Dove for sensitive skin, and I use a benzoyl peroxide acne cream wash. I dry off from showering with my fresh towel and then apply Clindamycin to any active flares. Clindamycin is a topical antibiotic treatment to help prevent as well as treat active HS flares.
With everything that I just expressed that I am doing, I report that I continue to get flares. Doing these treatments even with minimal success however allows me to feel somewhat empowered which does provide some hope. My most recent doctor suggested I try Humira which is a biologic that is used to treat things like HS, Psoriasis, and Rheumatoid Arthritis. It is an injectable, and something I’d have to inject once a week. When I researched the side effects they were extremely scary. The reason Humira helps these conditions is because it decreases your immune system which lowers inflammation. I opted not to try it for now and to continue trying to manage it using the regime I described above. I’m grateful that had been my decision because shortly after the Cornoa virus emerged. Many people with HS who were on Humira have had to stop their treatment temporarily due to fear that it will make them more vulnerable to Covid-19. I’m not saying I will never try humira. If managing it through this other regime proves to be ineffective and my condition worsens I’m sure I’ll become more willing to try other options. Fear and pain are great motivators.
The main purpose behind me sharing all of this is because I’m tired of being ashamed. I’m tired of being afraid to talk about it for fear of being judged, pitied, disgusted, and/or rejected. I started opening up about this with my sponsor and my therapist in 2019. In fact it was my sponsor who was kind enough to take me to and pick me up from the hospital after my groin surgery. I then most recently briefly mentioned it in a podcast that I did. I am beginning to share about it more openly. Just as coming out as being gay was painful and scary to talk about initially it was necessary for me to heal and for self-acceptance. I feel like this is the beginning of that process with my HS. Let the healing begin!