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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RachaelLouise 07/14/2017

I've been to the doctors twice for HS and I'm going again in a few weeks. The first time the doctor didn't mention HS but said she didn't think it could be cured ( I think she knew it was HS but just didn't mention the name). She gave me some antibiotics and a wash.

Second doctor completely ignored me. She just looked at my groin, wasn't interested when I said they start off under my skin or that I get cysts. She just sent me off with antibiotics and said being fat wouldn't help the pain. I told her I believed it was HS and that I'd had antibiotics before and it didn't help. She then asked what kind of medical credentials I had and was pretty nasty about it.

I've been too afraid to go back to the doctors for nearly a year but I'm getting a new lump a day and I'm getting black boils with blood clots in them so made an appointment. I will be with a new doctor but I'm not sure what to ask for.. Should I ask to be referred to a dermatologist? Do I mention the colour change and blood clots? What kind of stuff should I be asking for?

Jcruz 07/14/2017

I went to the df. Today and had a similar response, not my first time visiting for US. It's so frustrating to go looking for help, and they disregard you.
I was prescribed Hibiclens wash which I found on my own years ago through research and she prescribed a topical gel but I read reviews and they aren't good. I refuse to take antibiotics because I know it won't help in the long run.
In the same boat

RachaelLouise 07/15/2017

The antibiotics were given to me because of infections that burst boils had got but they've never actually done anything about the HS apart from a wash..
I think I'm doing to ask about being referred to a dermatologist because my GP hasn't got a clue and I'm running out of doctors I can see without transferring to a different practice!
Good luck to you also! I hope you find the right doctor x

me4579a 07/20/2017

Hi there, I had a similar experience and went through many doctors before finding a dermatologist who took me seriously and knew what he was talking about. I know it can be extremely frustrating. In my experience, antibiotics can help but can only do so much if you aren't also treating the source of the inflammation. Consider asking a specialist about Humira--that combined with Clindamycin and Rifampin has been really successful for me, and I haven't had a flare up in months. Good luck, and if you're ever in the Washington, DC area, look up Dr. Friedman: http://www.mdedge.com/edermatologynews/article/130098/aesthetic-dermatology/recognize-treat-and-teach-others-spot

meganshaye 07/27/2017

I had my first flare 11 years ago, I wasn't diagnosed until last year. I had 13 flares at once, I couldn't walk and was in tears every time I moved.

The dr that diagnosed me last year gave me antibiotics and the wash, it didn't help. I moved and had to find a new family dr, explained the diagnosis. He said he knew several people with the disease. Early this year, I had a flare that was the size of my thigh, couldn't walk. I called my family dr, he referred me to a dermatologist. They started a few different rounds of antibiotics, they all made me sick. I started Humira a few months ago, I'm getting less frequent flares (was having at least a minor one every couple of days, a major every couple of weeks). I haven't had a flare in 3 weeks and am ecstatic. The side effects from the medicine have been brutal but I was told not many have the type of effects I do.

Do your research, there are other options besides just antibiotics and hibiclens.

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