Today we hear from two women who have been struggling with HS since the onset of puberty. Although 23 is the average age that autoimmune conditions strike, it’s becoming more common to see symptoms appear earlier. Tara’s HS first showed up when she was fourteen. The onset of puberty is a tumultuous time at best; imagine adding a skin condition like HS into the mix. The first story especially resonated with Tara–her connection to the military and her failure with military doctors (and their prescription-happy attitude) is mentioned in The Hidden Plague. We’re happy to be able to help these two women gain the tools they need in order to regain control of their lives.
Where to begin… I was 14 and going through puberty the first time I had a boil flare in my armpit. My pediatrician gave me some antibiotic ointment and sent me home with mom. We had noticed a slight darkening of the skin in both armpits shortly thereafter. I’m not sure if that was a precursor of what was to come or not. Eventually my disease spread into other areas of my body like my groin, inner thighs and buttocks. I didn’t have too many flares until after I joined the Navy at 18 and maybe the stress of the job made things worse for me. I was stationed in Japan which was very cool but I was 8500 miles away from everything I had ever known. I remember the first time I went to medical in the Navy for a boil, the doctor had no idea what it was and just lanced it and packed it.
After that I just dealt with the flares on my own when they came. One time I got one on my buttocks that was so bad all I did was sit down and it expressed itself! And another time my right earlobe swelled to 3 times the normal size. Thank God I haven’t had my ear flare much since, that was really painful! The pain associated with this disease can sometimes be so debilitating and talk about the embarrassment of having this and to hide it from friends and family. I don’t wear sleeveless shirts without something else over covering my underarms or shorts, even in the heat of summer!
As a veteran I am very greatful to have medical benefits but I am so sick and tired of all the meds they prescribe to me. I am on Orthocept(birth control), Humira, Metformin, Hibiclens, Clindamycin and a bunch of natural vitamins and supplements(that I buy for myself). I was previously on an aspirin regimen, blood pressure meds, insulin, acid reflux meds, antibiotics(for 2 yrs) and direct corticosteroid injections to the sites. So I was finally diagnosed with HS in May 2010 by an Army doctor who had no sympathy for what I was going through. He only prescribed me some antibiotics and told me to stop crying when he said that there was no cure, I’d have this for the rest of my life! How very insensitive was that? I have been reassigned to a new doctor at my request since then.
Since 2010 I have been diagnosed with Diabetes type 2 and now I am having major problems in my gut. I think it may be IBS or the start of Crohns but I don’t go back to see my doctor until January, so I won’t know until they do the tests. I really just want to get this all figured out and to live a healthier and happier life without so much pain. I was diagnosed in late stage 2 but I’m already in the beginning of stage 3 because I have tunneling in a few affected areas. And I don’t want to have surgery which is what the VA is suggesting next!! Please help me Tara, I don’t want them to cut me open!
-Shannon, 31, Warrenville, IL
I started getting “boils” when I hit puberty at age 9. They first started in my under arm area and thighs. I continued to get them through my teens. I never really recall getting any treatment for them other then being diagnosed with a staff infection and putting antibiotic cream in my nose as a teenager.
When I was 21, I had a cyst drained for the first time. I had one so large in my groin area that it hurt to walk. My husband at the time took me to the ER and the Dr gave me diladed before opening the cyst. I left that night with prescriptions for vicodin and cipro. I actually ended up back in the er the next night for increased pain. They gave iv pain meds and sent me home.
I continued to have recurring boils the next several years. At age 23 I self diagnosed myself with HS when in nursing school after extensive online research. Being a poor college student I couldn’t afford to seek medical treatment so I self treated with antibacterial soap and tumeric pills. This helped some. I also frequently would open large/painful sores myself with either a needle or cut the tops off. This was really painful but gave me some relief.
After college I got a job with insurance. I saw a Dr that at the time I thought had some knowledge of HS. After telling her this is what I thought I had and showing her my areas, she agreed. She put me on long term doxycycline which really calmed some of the areas. Also during that time I lost around 80 lbs and was on birth control. This was the one time in my life that my HS wasn’t so bad.
Flash forward 5 years. I had a little girl 16 months ago. During my pregnancy I had a couple places to come open/drain but nothing like now. I now have well over 20 open/draining areas. This is the worse my HS has ever been. I am trying to find a derm with knowledge of the disease. I am out of work and on Medicaid. I have had a lot of stress in the last year including a major wreck which I now have PTSD from. I’m sure the stress isn’t helping.
I would love to win a copy of your book. Of course without working I can’t afford it right now. I need relief. I will be glad to help with any research that you have. I am an open book. I hope one day we will have a cure!
-Jennifer, 29, Hickory, NC
***If you already have a copy of The Hidden Plague, it would mean the world to us if you could review it here, on Amazon. Just because your story isn’t on PrimalGirl doesn’t mean that it shouldn’t be seen. Share how reading The Hidden Plague has changed your life!