Reply to Hidradenitis Suppurativa

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[quote=Anonymous]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! [/quote]

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