Hello, my name is Crystal and I’m a 27 year old female with stage 3 HS disease. Just to try to manage the condition I use a double dose of Humira once a week, I see a surgeon every 6 weeks for steroid injections directly into the active cysts, I see a dermatologist every 2 months, and I just had surgery to remove many cysts from my groin.
This is my story.
I was 17 when my symptoms started, and at first they didn’t appear that bad. I thought it would go away by its self like it was a minor infection. I was embarrassed and didn’t want a lot of people to know about it. When I was 24, my [now] husband made me a deal that he wouldn’t marry me until I got it looked at. He wanted me to take care of myself. It was another year though before getting my diagnosis from a GP who specialized in dermatology
The pain is like nothing I have ever felt, there are days when I cannot even walk. The pain gets so bad that it blinds me and makes me not want to do anything. It can make me dizzy and keeps me soaking in Epson salt baths as much as possible for relief. I have found that a Gluten and Dairy free diet improved the number of flare ups and the inflammation.
I am a teacher and sometimes I limp around or I end up using all of my sick days going to doctor appointments or letting cysts drain on their own. I had surgery done early this summer, and had to use the rest of my holidays for recovery. I spend my nights trying to find a comfortable position but often not able to sleep at all.
Some of my closest colleagues know that I have HS, however my direct bosses do not. They know that I struggle with a painful disease, and that I had surgery this summer [they even asked how I was]. Overall, they have been supportive… but then again, I am lucky to be a teacher because I usually get enough sick days to cover doctor’s appointments, and there are guidelines set in place to help should I require more time off.
Battling the condition is full of constant challenges.
My clothes get ruined, my period is much more painful because of irritation, I can’t work out when it acts up, I can’t walk the dog, I get very irritable (because of the pain), I end up spending a lot more money for numbing creams, vitamins, dressings, etc. After my last operation the wound opened up after having the stitches taken out and now I have to have a nurse come every day to change the dressings.
I wish other sufferers will get a much quicker diagnosis then I did, and that soon there will be more advanced research and technology so that there is a cure. My life would be completely different if it were not for HS. I wouldn’t have to lay in bed for days or stop my normal activities, I would not have to spend money on supplies or take as much time off of work, and I would enjoy life more because I would not be as irritable from the pain.