hidradenitis suppurativa

It’s time for me to write about one of the reasons I started this blog, one of the reasons I needed to just get my thoughts and feelings out of my own head. The beginning of this year has been pretty medically significant for me. In February I received three different diagnoses. One is a eureka moment connecting multiple problems investigated over the years, but the relief that this would have brought has been overshadowed by the other two, both of which are skin conditions that I had little control over developing and have only slight control over now.

The one I’d like to touch on today is Hidradenitis Suppurativa (HS). If you Google it, be prepared for some pretty horrible images. Thankfully, mine is mild in that it only weeps (suppurates, hence “suppurativa”) in one area. My dermatologist says HS is an autoimmune condition, but not a lot is known about why it occurs. I suppose that could be said for most autoimmune problems.

HS typically affects the inverse areas of the body, those that are skin touching skin like the armpit and groin. It will show up rarely in other areas such as the back of the neck. The body attacks hair follicles and, in severe cases, sweat glands. It causes inflammation that often starts as boils on the skin or deep abscesses. These are often painful. Some can get quite large. These may eventually rupture and leak. They may then heal or, and unfortunately this is very likely, will remain as unhealed wounds that continue to leak fluid. From my research and own experience, this constant leakage is often seropurulent exudate (translucent and yellow to amber in color). It may also contain pus and blood. For many this leakage is spontaneous or even constant and may have an odor, so it can damage clothing and cause embarrassment on top of the pain and discomfort. While the wounds may be affected by bacteria once open and accessible, the original inflammation is not caused by bacteria. Therefore the antibiotics often prescribed to control it are chosen for their anti-inflammatory properties as otherwise they’re ineffective. This isn’t an issue of hygiene and it isn’t something I could have prevented, but now the goal is to deal with this inflammation my body is creating. This is how my dermatologist explained it to me.

While I have been progressively getting more abscesses in the past few years, I didn’t think it was anything other than getting older and heavier. I never experienced abscesses when young, and the first one showed up singly and nothing followed it for a long time. I checked in with my primary care (not the same doctor I see now), but it wasn’t considered out of the ordinary. And maybe that one wasn’t, but at some point it became something more. As I started to develop more abscesses in my underarms and then some deep under the skin on the sides of my groin, I just treated it as normal but annoying. I endeavored to stay as dry as possible in case it was related to sweating. I went from one per year to 1-3 per month existing at any one time. It seemed that as one went away, another was developing. They often occurred in the same spot or nearby.

Then, in February, I asked my husband to look at a painful area in my armpit. It hadn’t been bothering me more than any other past spots, and in fact didn’t feel like a particularly large lump, so I hadn’t worried about it. Then one morning it hurt so much to glide on my deodorant that I had to dab it on instead. When my husband pressed on the area, an oily yellow fluid came out. And kept coming out through two tissues of cleanup. Then he filled a third tissue with bloody fluid. At his urging, I scheduled an appointment with my primary care doctor.

When I described the drainage to my doctor and he took a look at it, he immediately diagnosed me with HS. He said he was sorry to have to diagnose me with this because it was a difficult condition to deal with. It might never get worse, or it might get drastically worse with scarring and tunneling invading multiple areas. He considered the deep abscesses around my groin HS as well, just not as developed as what was in my arm. I followed up with my dermatologist who seconded the diagnosis and put me on a couple months of antibiotics before a follow up visit. I’m currently on Doxycycline Mono 100mg.

Again, what I experience is mild compared to many with HS. I only have one area that seeps fluid, although it can come out of two holes (one which isn’t large enough for me to see unless fluid comes out). It doesn’t leak on its own, thank goodness, only when pressure is applied. The area around the seeping retains this fluid and begins to look puffed up and swollen. I verified with my dermatologist that it doesn’t harm the area to drain it, so last night I hung a mirror up in the shower and pressed around it until the fluid flow was minimal and was a strong red instead of yellow/amber. Relieving this pressure seems to reduce the background aching pain and chance of sharp pain during movement. There is a harder area deep in my skin, but the dermatologist hopes the antibiotic will soften it.

The idea of developing this in my groin creates anxiety, so I’m trying to find things I can do to keep it under control. There is no cure for it and the standard clinical treatment seems to go from antibiotics to biologics to surgery to remove rotten flesh. Surgery doesn’t keep it from recurring because that skin isn’t actually the problem. That’s just where the body decided to attack. Sadly, many experience recurrence of their symptoms while recovering from surgery, sometimes even in the newly grafted skin. I hate the idea of surgery, although it’s more the recovery that I fear. It’s frustrating that these are the only treatment options. My dermatologist couldn’t recommend anything else as there hasn’t been enough research into the affect of diet or other factors. He doesn’t want to get my hopes up about something that isn’t proven to at least help, and I can understand that stance. He said weight is not the cause, and losing weight is not the cure. He said even the suggestion that losing weight could ease symptoms hasn’t been sufficiently researched.

I’m just not satisfied with being told there’s nothing I can do other than take medicine that isn’t really for this problem. I can’t imagine anyone would be satisfied. I’ve found the following approaches on multiple sites:

  • Warm baths to soothe pain
  • Lose weight to reduce rubbing of affected areas
  • Wear loose clothing to reduce rubbing and pain
  • Eliminate brewer’s yeast, dairy, and any food in the nightshade family to reduce HS symptoms and prevent new sites from forming

As you can see, only the last one tries to keep the problem from occurring and actually reduce what is already there. The others are managing symptoms and trying to keep from exacerbating existing problems. I think it’s worth at least trying this for, say, half a year, but I’m having some mental resistance to putting it into effect.

I’ve successfully eaten low carb/high fat/moderate protein before, but I didn’t need to avoid dairy. I’ve done this for an elimination diet related to my IBS, and that was a very very long few weeks. Cheese is my favorite food in the world. I deal with reducing my sugar intake by having some cheese instead. I spoke with my Cognitive Behavioral Therapist about this mental resistance, and we seemed to narrow it down to being overwhelmed by the commitment and feeling like I was setting myself up to fail. I often have an “if I can’t do it perfectly, I won’t do it at all” mentality. Doing it “well” or “better than nothing” isn’t good enough. She tried to help me see that succeeding would be any improvement even if it wasn’t 100% adherence. She suggested I start it a day at a time, or even a meal at a time. I think I need even smaller steps than that, so I am going to incorporate low carb back in, one meal, one day. If I can do that, then maybe one meal the next day. But I’m not going to think out any further than that, because I’m not setting up mountains to climb. The trick is that taking it one step at a time, eventually we look up to see how far we’ve come. 🙂

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