Hello, my name is Jenna-Sue and I’m a 28 year old woman with HS Disease.
This is my story…
I was 16 when my symptoms started, and it took another 9 years to get a diagnosis from a Nurse/Midwife. I only suffered a couple small stage 1 flares on my inner thighs ages 16 through 24. When I became pregnant at 25 the HS began to slightly worsen. That was when I was diagnosed by my midwife.
Two weeks after my baby was born, I received the Nexplanon (progestin based) birth control implant in my arm. This caused me to spiral from stage 1 to stage 3 very rapidly, with lesions beginning to appear under my breasts as well. It was 7 months before I could get the implant removed & the symptoms improved. I still battle stage 3 even now, but am slowly getting closer to stage 2.
Currently, I am self-employed and there are definitely days I cannot work because of my HS. I work in the body modification industry. I do a lot of sitting & many days that is very painful for me. Luckily for me I can change my own schedule if my symptoms get too painful. The pain can be anything from just an irritating soreness some days to intense and unexpected deep, immobilizing sharp pain.
HS can present challenges in every aspect of my life. Being social with friends, being intimate in relationships, caring for my child, the ability to be motivated at work…it just goes on. The chronic pain can easily put me into spurts of depression. So even if the pain isn’t intense that day & I’m not suffering physically, I may be suffering mentally or emotionally. It definitely takes a toll on my self-esteem as well.
In the past I have been prescribed topical Clindamycin & Spironolactone pills. I saw mild success with both of these, but the results were very temporary. I’ve also been to a Dermatologist, but she wanted to get me on Humira but I opted to try more natural methods first. Lucky for me, I’m having success going that route. I was worried about starting with such a heavy medication. My dad also has an auto immune disease (not HS) and he was on Humira. The side effects seemed awful and I didn’t want to put my body through that if I didn’t have to.
I have not had surgery; however my doctor said I would be a good candidate if I did decide to do so. I have contemplated it, but am still undecided if that is something I really want to do. Currently I’m managing my HS by being back on Nuvaring (estrogen based) birth control. I also wash with Hibiclens twice a day, apply tea tree oil on flares with Q-Tips daily and I changed my diet. I am currently eating vegan, gluten free, nightshade free & yeast free.
I know this may sound extreme to many, but there are a lot of food options and the relief from the pain and seeing my flares finally heal is SO WORTH IT. I plan on reintroducing foods to see what my triggers are once I’m in remission, which it appears I am well on my way too!
If I could grant a wish to someone newly diagnosed with HS, it would be that they discover their trigger(s) like many people have done. They can then experience going into remission before developing too many tunnels, open flares and scarring.
Never stop trying to find something that helps!
Yes, I know that without HS my life would be very different. I wouldn’t be exhausting several hours trying to find tips to manage the pain. I wouldn’t be limping around my work and would not struggle to stand when my toddler grabs my hands and wants me to get up to play or when she wants to lay on my chest. I wouldn’t have to avoid being outdoors in warm weather for too long and would have less depression and greater confidence in myself and my relationships.