Hidradenitis Suppurativa
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Anonymous
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Anyone have experience with this? In August I developed what I thought was a pimple in my left armpit. Then several more. Thought it was a breakout, after about a week they were getting worse, starting to hurt, and I started developing one on my right armpit, so I went to the dermatologist. She basically brushed me off and told me it was folliculitis (I have had folliculitis, whatever I had in August was not that) and when I asked about HS, she basically told me she didn't know if it was or not (I did not like her and would never see her again, my normal derm was out on maternity leave) and that she'd prescribe an antibacterial cream used in treating HS. It helped and the lumps went away after a few days.
Yesterday morning I found a lump in my right armpit. Mildly freaked out now. I thought whatever I had in August was just a fluke but it would appear it IS HS which is a lifelong condition and I'm freaking out about it getting worse. Any experience with this? I still have the cream and am applying it to the lump I found yesterday to prevent it from getting worse, making an appt. at the GW Dermatology HS clinic Monday to talk to someone, but I have anxiety about this and anyone with personal experience they are willing to share would be greatly appreciated! |
Anonymous
| To a certain degree it can be managed by diet. Be sure to ask about that. Also OP are you overweight? If so, weight loss is beneficial |
Anonymous
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I have it, it was much worse when I was in my teens and 20s and it’s mostly better in my 30s. On the scale of how bad it can be it wasn’t that bad though. I still get flare ups from time to time but it’s not a huge deal.
I honestly wouldn’t worry too much. If you’re an adult just starting to get boils here and there it’s unlikely it’s going to become very severe where you have constant painful flare ups. Keep your blood sugar/insulin in check, exercise frequently and eat healthily. You’ll be fine. |
Anonymous
Forgot to add—easy way to help manage it is start washing your armpits with hibaclens at the end of every shower. Put it in a foaming hand soap and scrub a handful in for a minute before rinsing. This will go a long way to avoiding flares. |
Anonymous
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I’ve had hives like this from gluten intolerance. They were incredibly painful and I couldn’t get any relief until I cut all gluten from my diet. It took weeks to clear. My doctor thought I was crazy but it was the only thing that worked.
It was not a coincidence and repeated a few times when I tried to cheat on gf diet. |
Anonymous
| My husband takes a daily antibiotic but has no flare ups anymore. |
Anonymous
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My sister had trouble posting and asked me to:
I’m 34 yo female who has had HS for the majority of my life. I began showing symptoms around puberty (which is “normal” for HS). My mom took me as a teen to my GP doctor and the Dr chalked it up to poor hygiene, me being overweight (I will share more on this in a bit), my deodorant, and the fact that I shaved my underarms. I made changes. Switched to aerosol deodorant, stopped shaving, etc. Despite making these changes it didn’t help. During college it began to become worse. What used to be a few small bumps turned into big ping pong ball sized lumps. That would be painful but not terrible to manage. When I was older and had better healthcare, I saw a dermatologist because my lumps were now large and super painful. This was the point that I FINALLY got diagnosed with HS. I took antibiotics I took for almost 2 years. They didn’t do anything for me. I tried changing my diet. Did I feel better? yes! Did it put my HS in remission? No. I was really strict Anti-Inflammatory Paleo for about 2 years. There are great books and cookbooks out there if you’d like to try. For me personally, I weighed the restrictions versus the outcome (my flares) and it was not worth it for me. I missed bell peppers, tomatoes, and dairy. I was able to identify the foods that make it worse for me. And I try not to eat as many of them. I am stage three now in my underarms and stage one developing to stage two in my groin. I am currently on no medication to treat my HS, yet it is manageable. My underarms are full of scar tissue and they “leak” fluid from time to time. Despite having this condition/disease I try not letting it hold me back. But there have been days that I’m in so much pain I can’t get out of bed or raise my hands about chest level. Here are the things that have helped me: 1. Natural deodorant (it’s a hard switch because there is a time of “detox” that you will be SMELLY!) If you don’t think you can fully commit to natural then at least get aluminum free. 2. Talc-free baby powder or corn starch are your BFFs! Try and stay as dry as possible. It helps reduce wetness which I find increases the probability of a flare. I have some in my car and in my office just in case. 3. HS can get worse with stress! It’s easier said than done, but try and be stress-free. 4. There are links about hormones and HS. My HS gets worse when I have my period. 5. Advocate for yourself! It took me nearly 10 years before I got a diagnosis. Don’t be me. 6. If you worry about ruining your clothing bc of cream or the bumps rupturing, use panty liners. Stick them on the inside of the armpits. 7. I have also found that antibacterial soap also helps. Being overweight: I could spend hours talking about this but I won’t. Being thin doesn’t equate to being healthy. I’ve lost and gained weight during this whole period. When I first started showing symptoms I was not grossly overweight. I’m now considered obese but my weight has fluctuated. But I also know several people who are thin or normal weight that also have severe HS. HS is different for everyone. We all have a different experience and different outcomes to what we try. I don’t mean to scare but wanted to provide a more in depth answer. There are so many support groups on Facebook too! I highly recommend joining one. There is so much knowledge and self advocacy floating around. My next step is trying Humira. But I’m taking my time since I don’t like the idea of giving myself a shot! |
Anonymous
| Also I also highly recommend hibaclens too! |
Anonymous
Okay, so due to some personal issues/stressors, my diet has basically been shit this year AND my drinking has been heavier than normal. I have gained a bit of weight but even with, I am far from overweight (if anything I used to be underweight and am now at a healthy weight). The diet is probably a big component of it. |
Anonymous
Interesting. So I used to get painful boils in my groin as a teenager and my mom thought it was just underwear rubbing against the skin and causing irritation. In hindsight maybe it was HS? However, I haven't had a boil in my groin in years and the armpits just started. I am actually in my 30s now but what scares me is that it was two months apart. |
Anonymous
This is helpful, thank you! |
Anonymous
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keep going until you find the right derm. I went on antibiotics for an unrelated skin condition and it all went away-but if I stop them, it comes back. Even my current derm doesn't really think it is a big deal, but it is, and if you research, it is important to treat it, so it doesn't get worse.
I only get them in my groin, but they are painful and make me feel bad emotionally as well as physically and of course, affects my sex life. GL |
Anonymous
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My young adult child has this. Here's what helps prevent flare-ups or ensure that they calm down quickly when they start:
Strong benzoyl peroxide cleanser in the shower daily Shaving less frequently Using spray deodorant instead of stick Limiting sugar Vitamin d supplements |
Anonymous
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I have it, but in a different areas. There is an HS clinic at GW, I would make an appt with one of the providers there. Most derms and other doctors don't know anything about it. I came to the conclusion on my own and flagged it for my doctor.
https://gwdocs.com/specialties/dermatology/hidradenitis-suppurativa-clinic |