I'm 48yo and have had HS since going through puberty, 30 years ago. I got my period late, at 18 yo, and always had an irregular cycle. I started getting outbreaks in my groin at about 17 years old. I have gone without a proper diagnosis and no consistent medical treatment, mostly because I usually don't have insurance. I've suffered with HS silently all this time, but that's changing now. I'm talking to everyone about it. The only 2 people that knew about my flareups are my mother and sister.
When I first had problems, I went to the doctor to get help. The doctor told me that I wasn't clean enough. So I focused all my energy on trying to keep it super clean but I was making it worse. I returned to the doctor and he thought maybe I had an std. I was tested for everything and it was negative. I only had 1 partner at this time and I know he was clean and didn't sleep around. I lost confidence in my doctor and decided to try and deal with it. I didn't return to the doctor for it again until my late 20's as it had spread to my underarms and behind my ears. The outbreaks were horrible and would not go away, they kept getting worse. I was very depressed, feeling that death was better than dealing with this disorder, couldn't work a reliable schedule and struggled to be truly independent. I struggled to get up everyday because it was painful to push through the day. This time the doctor put me on spironolactone and said I would need to be on it for at least 3 years. He warned that if I got pregnant, my child could have birth defects. I stayed on it for a year. it stopped the outbreaks and the flares behind my ears healed. I went back to the doctor and asked if there was anything else I could try because I was in my child baring years and didn't want to chance having a child with birth defects. He switched me to hormone therapy with birth control. This stopped the flares also. He warned that the possible side effects could be cancer or if I stay on it for too long, it could stop my body from ovulating, even after coming off the pill. I stayed on it for about a year. I was afraid it would make me sterile or give me cancer.
Around that time, I started seeing someone new. I never had problems with relationships because of my HS but this person turned out to be abusive. He humiliated me, shamed me and made me feel really dirty and sleezy. He had a real angry and disgusted response to my outbreaks. I've been single now for 13 years. I'm better off being single than allowing myself to be that vulnerable again. The smell from flares or needing to be careful of where I sit, because it leaves a stain or a smell. Most of the time I keep to myself, not going to events. I just don't want to face anyone. I don't want questions about my job situation or anything else for that matter. I could never find the proper help and figured I need to just deal with it the best way possible. Even though others knew about the outbreaks, I rarely talked to them about the toll it was taking on me, emotionally, mentally, financially and socially.
HS has affected my employment, I've lost jobs because of attendance or my inability to perform. My relationships have been affected by it. My ability to have confidence in myself to maintain employment, achieve true independence or live the life that I would like to live. I have problems with depression and anxiety.
This past year and a half, from 2020-2021, I started having other health issues so I returned to the doctor. I'm finally seeing the dermatologist for my HS. I'm seeing a psychiatrist for my mental health issues. I now know there is a name of this awful condition and that I'm not alone in my suffering. Right now, I'm going through menopausal changes so my HS has calmed down a lot. It's not completely gone but it's manageable. My 30 years of dealing with HS has caused a lot more damage than scars on my skin. People need to be aware. The medical community needs to know that there words carry heavy weight on their patients.
I still struggle with a lack of confidence in my ability to be truly independent. I've never had a place of my own. I've always shared a place with someone because I lack the confidence to maintain it myself. If I'm unable to work, how would I manage? This is always in the back of my mind. And it's lead me to abusive relationships and putting up with some horrible behavior because I'm scared to do it on my own. I've lived in my car before. I don't want to end up there again.
I have hope though that I'm on the right road to recovery. I want to live the life that I was meant to live. There is hope!!