Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Living happily with HS

Hereforyou56
Hereforyou56

I remember my first HS flare up. I was so disgusted I put it out of my mind and pretended it wasn't real. I though it would go away with time. Then months went by and I was putting band-aids over the same oozing lesion every day. Spending a lot of time in the bathroom crying. Not talking to others because they wouldn't understand and I thought this was my fault so I had to suffer alone. I thought maybe it was an STD. I was so embarrassed. I was completely depressed. I believed I could never have a relationship with a man or ever have a sexual encounter again. Then I got another lesion, and another. And it became ridiculous and I had to tell my Mom something was wrong and that I had to see a doctor. I went to the dermatologist ready for her to gasp in horror when she saw. But to my surprise she new exactly what it was and said my case was mild. I couldn't believe it could get worse. Though it was good to have a diagnosis it came with other ugly truths. The doctor said it usually worsens over time and there was no cure. I remember hysterically crying in the doctors office. I remember when I lost my virginity, the guy said "what's that?" And then we stopped. The worst thing that happened was when I was at college and I started dating someone but I had so much anxiety about him seeing. I went to the library and I researched and looked for other people with HS I found a site and read some stories. The one that stuck was of a middle aged woman who said I was so bad and getting worse and her husband was so disgusted by it that he asked for a divorce. That was my worst fear. I am posting this because I don't want anyone to read horror stories of HS when they're depressed and scared already. Today I am so happy and I haven't had a new lesion in years. I forget that I have HS sometimes. I got laser hair removal which was painful and expensive, but completely worth it. When I have inflammation I use tea tree oil and it works like a charm. And for near immediate results for people really suffering, there are steroid shots a dermatologist can give you. You are not alone, and it will be okay. 

0122
0122
Did you stop getting flarups after getting laser hair removal? Or a change of diet? What changed for you where you stopped getting them? I've had a painful one in my armpit for almost a year now, it's been open for three months. It's my first and my only, so I know there are many people who have it much worse. But I am tired of the pain, the smelly infection, having to bandage my armpit, not being able to shave or where deodorant...I'm tired of it all, and so scared I am going to get more. I have nightmares where I get a flarup in the other armpit and I wake up grabbing at my armpit feeling for bumps. Just curious when things turned around for you, thank you!
Hereforyou56
Hereforyou56
It was definitely the laser hair removal that stopped my flare ups. I eat whatever I want. Now I just have a few scars that aren't too bad. I have one scar that was from my worst and longest one. This one sometimes looks a little bit inflamed but I put tea tree oil on it and it's fine and doesn't turn into a full fledged abscess. I believe that potatoes are a food that causes inflammation for me, but it is different for everyone as it is an autoimmune disease. I definitely recommend going to a good dermatologist and getting laser. You will have to do several rounds of laser because it's hard to get every follicle, but after like 8 treatments I never got an abscess again.
unidentified
unidentified
The steroid shots are everything. I don't know why people aren't shouting from the rooftop about those. I just started the laser process, so I'm excited to hear that it worked for you. My treatment plan over the last few years has been humira and the kenalog injections, which has been really great- full-fledged breakouts are few and far between. I'm hoping the laser treatments will be just enough to put me in remission. I've definitely had my down and out, disgusted moments over the years, some bouts of depression and months on end of self loathing, but a good dermatologist who can think outside the box (NOT just antibiotics or surgery) can make all the difference in the world.
Yo-Yo
Yo-Yo
Thanks for the story it makes me feel better knowing that I'm not along with hs. Some one else has went through the same thing.
MegsMaaMa
MegsMaaMa
You, my dear, are a wonderful, caring person. I am sending your information to my daughter in law. My grand daughter had a huge lump in her left arm pit but it was not an oozing bump this time, but a very long in grown hair that they removed. She has been dealing with HS for a while now but the surgery was the attention grabber. She left the hospital with a huge open wound in that arm pit that has been healing for over 2 weeks now. She has Downs also. So thank you for the laser information - I will send it along. You take care of that caring soul my dear - there are not enough of you around.