Hello, I’m Raquel, a 44 year old female diagnosed 10 years ago. I believe that HS, like many illnesses, can be character building. It has made me stronger, more understanding and willing to help others.
I am a survivor, and this is my story:
The pain from HS feels like my skin and hair are bruised and being pinched, pulled and twisted in sensitive areas like the armpit and groin. Sometimes, we build a tolerance to the pain, but that doesn’t mean it isn’t there. Let our guard down and there is hell to pay!
There are a lot of challenges living with HS. Walking, running, aerobics, weight lifting, hiking became painful and embarrassing as I could not wear a bra. The sweat and friction would irritate my skin under my breasts and in my groin. The fear of pain overcame my enjoyment of a healthy lifestyle. Fear of sweating and causing infection is another challenge, along with not knowing why it was happening or having none of my peers know what I was talking about.
As a result I developed very low self-esteem caused by bad depression. I’ve tried multiple types of off counter and illegal drugs, even developing dependencies and addictions. I wish anyone just getting diagnosed would understand and recognize their triggers and get educated about treatment and prevention. A daily food journal is a must. When I notice 2 or more cysts go to stage 2, I’ll check what I ate the day before. If the same items show up continuously, you can find your triggers.
Refrain from blocking your pores with anything like antiperspirant. Do not shave, instead trim private areas. Through the years I’ve spent a fortune on cleansers, medications and bandages.
In stage 2, you have to learn about wound care.
Bandaging using gauze is important, as is iodine for cleaning if you are not allergic to it. Also part of the treatment plan is Antibiotic ointment and Hepa-fix or Me-fix bandaging tape cut to the proper size. You must place the gauze with anti-biotic ointment onto wound. Then tape the gauze to sides of creases allowing space at fold (armpits, under breasts, groin area).
There have also been lots of medications: some that did not work like Accutane or Doxycycline (lifted my fingernails). Drying with alcohol or hydrogen peroxide also did nothing for me. A few medications that have worked include – Sulfate, Ibuprofen and Acetaminophen. I’ve also had success with cannabis for pain so my Dermatologist has recently approved me for medical MJ. A friend makes me a cannabis product called Salvation Salve for both pain and swelling.
As part of my HS education, I’ve learned to reduce starches, fats, lipids, sugars and processed foods while increasing green and colorful vegetables that are raw or steamed, not boiled. I’m also eating more protein and reduced my calories to loose weight. I’ve even made sure I get proper nutrition by using Herbalife Formula 1, 2, and 3. Also meal Replacements, Cell activator and multivitamins have allowed my body to begin to heal.
The other part that made a world of difference was doing a cold rinse after my bath/shower. After a good cleaning, closing the pores is essential. Change the temperature of your skin so you are not sweating when you exit the shower.
Also dedicate yourself to working out even if you have to spend an hour bandaging to prepare. Don’t forget to take a pain reducer before the workout and to keep drinking water. The pain took me away from my athletic youth. Now I watch with sadness as my two oldest girls, who are in their early 20’s, are going through what I went through. They are both in Stage 2. Even a few of my uncles have HS and there may be more in my family as HS is a condition that most patients will hide.
Self-esteem issues contributed a lot to my depression over the years. So, remember when I talked before about wishing newly diagnosed people would learn their triggers? I would strike that: I’d wish for a cure!