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,...
I kind of just want to tell my story and pray that someone has some advice for me or at least some kind understanding words to help me get through what I'm feeling.
My name is Emily. I'm 20 years old and I've had HS since I was about 8-9 years old. Every study I've seen says that it's not seen in children, but I can personally say that isn't the case.
When it first started, it was really only on my bottom. As the years went by it began to spread further and further. Now I'm 20 years old and have more diseased skin than good skin. My bottom, inner thighs, hips, waist, under my arms, under my breasts, and it's even starting to appear on my stomach where my bottoms lay, and around my back where my bra lays. Anywhere that gets hot and/or creates friction. There isn't a single day I go without pain. There isn't a day that I don't wonder if other people can smell the puss and blood that I smell on myself. I don't remember what it's like to not have this disease.
For a long time I was afraid to get a job. I thought it would only make things worse. But my mother is disabled and doesn't get much. We couldn't go any longer without another income. Problem is, I was right. I started working and my skin only got angrier and angrier. I lost my job 3 weeks ago and it still hasn't calmed down any. I need another job, but I'm terrified of how bad things will get. And the worse it gets, the faster it escalates. I'm scared. I don't want to be disabled by the time I'm 25.
The summer before my senior year, I ended up with a cyst the size of a golf ball in the back of my neck. It was pushing on my spine and I had to get it removed. I missed the first month and a half of my senior year, recovering.
Today, I can hardly move my right arm because my armpit is so swollen from tunneling sores that are too deep to open.
I just.. Sometimes all I want to do is cry. It never stops. I'm so tired..
I don't know what to do anymore..
My name is Emily. I'm 20 years old and I've had HS since I was about 8-9 years old. Every study I've seen says that it's not seen in children, but I can personally say that isn't the case.
When it first started, it was really only on my bottom. As the years went by it began to spread further and further. Now I'm 20 years old and have more diseased skin than good skin. My bottom, inner thighs, hips, waist, under my arms, under my breasts, and it's even starting to appear on my stomach where my bottoms lay, and around my back where my bra lays. Anywhere that gets hot and/or creates friction. There isn't a single day I go without pain. There isn't a day that I don't wonder if other people can smell the puss and blood that I smell on myself. I don't remember what it's like to not have this disease.
For a long time I was afraid to get a job. I thought it would only make things worse. But my mother is disabled and doesn't get much. We couldn't go any longer without another income. Problem is, I was right. I started working and my skin only got angrier and angrier. I lost my job 3 weeks ago and it still hasn't calmed down any. I need another job, but I'm terrified of how bad things will get. And the worse it gets, the faster it escalates. I'm scared. I don't want to be disabled by the time I'm 25.
The summer before my senior year, I ended up with a cyst the size of a golf ball in the back of my neck. It was pushing on my spine and I had to get it removed. I missed the first month and a half of my senior year, recovering.
Today, I can hardly move my right arm because my armpit is so swollen from tunneling sores that are too deep to open.
I just.. Sometimes all I want to do is cry. It never stops. I'm so tired..
I don't know what to do anymore..
by the time it was 21 it was stage 3 and I was bouncing from doctor to doctor trying to figure out what to do. I also worked and then went to law school while it got worse and worse (I had one doctor look at my right arm and politely say "there's just not a lot of skin there" because it was basically one open, unhealing wound). It was awful and painful and so so smelly and hurt so much I vomited every day (the anemia didn't help, watch out for anemia, it comes along with this). It also got far enough for me that I got this crazy secondary symptom where your legs get covered in bruises.
But! that is enough of a monologue because during those years I would come here and get a little despondent because it seemed hopeless but it's totally, totally, not (despite how bad it got for me I even graduated with honors, my treatment didn't start until part way through third year, so it's totally doable). So, without further ado, let me tell you how I coped and the treatments I got that have been totally miraculous:
So, the big thing is you want to keep things clean to avoid excess infection right? I recommend using "surgical pads" in places that are wounds. They are thick and cushy, which means in places like your armpit you get some padding from the pain of bouncing and rubbing. They are also absorbent, and can take a whole lot of ooze before you need to change them (if you have, say, back to back lectures or 8 hour shifts they are a god send). Coat those babies in vaseline! Coat all your bandaging in vaseline if it's going over an open wound. Otherwise it'll stick to your wound and will both hurt and cause bleeding, and anemia is actually a serious consideration when dealing with this. Change your bandages as much as you can stand but no more (you might feel an impulse to do it more, but again, bleeding and I found it traumatizing, and it's ok to only do it 1-2x a day). For the groin: I used "overnight" sized "sanitary" pads that also did odor control to absorb the ooze and the smell. Those I changed copiously. Also, if you can stand it, after you shower, spend a lot of time air drying. Lift your arms like chicken wings and just hang out, get them totally dry. Try to let your groin dry out as much as possible. Ditto to the booty. If the smell is getting to you: soak in a baking soda bath. Just dump in a bit, it'll get you 8-12 hours of seriously decreased stink.
But before you have wounds you have cysts right? And those are so painful. My right arm was basically completely out of commission for two years (don't be me). There are a lot of things people recommend for the cysts (tumeric pils: you will puke if you don't take them with food, tea tree oil: not powerful enough... really for anything... ever). Your friends are heat, epsom salt, and baking soda. I used to use neosporin (or you can get vaseline, I liked the stuff with antibiotic because it also has a light analgesic) and mix it with a little baking powder, slap it on your cyst over night, then wash off in the morning. Helps it "run its course" (start to drain). But the best thing you can do is a hot hot epsom salty bath. Can't stand that idea? That's ok! Try filling your sink with hot water, adding epsom salt, putting it on a clean cloth, and holding it against the cyst. It'll feel a lot better instantly and encourage it to "go its course." I took baths basically nightly just to keep the pain down. Which is a pain in the butt, but like, we've got other pains in the butt to contend with right? Also, I take it back, the best thing is to go into your doctor, once you have a knowledgeable one (see what is to follow) and he will lance it. It helps it heal faster, feel better faster, and gives them an opportunity to take a sample of what flaura they're dealing with so if you do need antibiotics, they know what to prescribe.
Don't get mad at yourself for not being able to do something, just do what you can do. I told myself that a lot.
I also found the most important thing was remembering that this isn't forever, it just isn't. One of my better doctors said it tends to peak around 25 then start to burn out: it probably isn't true for everyone but it's true for enough people for you to have hope. And you want to make sure when it's over, you've still made some progress in your life. So going to work, going to school, it was worth it for me. My doctors suggested taking a medical leave but I couldn't stand the idea of being a full time invalid. It's not easy, but you can do it. It's just a matter of grit and determination and every human's ability to persist at living.
That being said: I'm now on remicade which is faster-acting than humira and I have 0 side effects and it has literally given me my life back. Humira is FDA approved for HS now, and is also a great option because it's an injection not an infusion. The remicade has stopped flare ups and actually reduced the nodes of this disease so that now, I'm progressing on to getting a series of surgeries which are going great, are totally manageable, and the results are awesome. But insurance and doctors, ugh, right? So here are my thoughts on what you do medically.
You go to a general practitioner (don't have one? get one). You totally have to be willing to self advocate at this stage. Stick up for yourself, assert yourself, tell them what you want, because good odds they don't know what to do (hence antibiotics). You want one, maybe two things from them depending on the severity. 1. a referral to a dermatologist they know to be knowledgeable (this will probably not be your final dermatologist). 2. If your condition is unlivable, consider asking for a short round of prednisone. It's a steroid. It is not good for you long term, it hardens your arteries, and it turns off your immune system. But HS is an autoimmune disorder. Technically, it's an autoinflammatory disorder: your inflammation response, part of your immune system, is out of control in certain parts of your body. Prednisone turns off a lot of different elements of your immune system, which is bad, and the side effects are serious. But if you need it, you need it, and it can be miraculous. A 10 day step-down dose will keep you going for a while, long enough to get an appointment with your referred doctor (make sure to not just accept when they give you an appointment months away, make sure to tell them it's serious, that you want to be on the cancellation list, that you need help).
So, chances are your next doctor is a private practice dermatologist (for a lot of reasons, you're probably going to want one connected to a hospital, largely for the resources). This is going to be an appointment where you need to get naked and show them everything (I did, I hated it, cried the whole time). It's ok! This dermatologist will probably also want to photograph the worst parts of you (it's humiliating, I cried the whole time, but trust me it's useful). If they don't, consider encouraging them to. Having photo evidence of things has been incredibly helpful to me. It might be that this dermatologist will have the ability to treat you, but in my case, I had to be referred, but this time, because the dermatologist referring me knew the medical community, they referred me to someone with actual expertise in HS (send me a message if you want doctor's names, I know good ones in New Hampshire, California, and Utah).
So, you probably won't have to navigate insurance like I did, you'll probably get a doctor after that willing to prescribe humira, which is FDA approved. One thing that matters for me, is that typically remicade is every 8 weeks, but more and more doctors are giving it to HS patients every 6 weeks. This gives you more chance to heal, I have literally no flare ups and I'm pain free after being suicidally miserable for two years (I cannot recommend taking care of your mental health while you do this enough, seriously, no shame in getting a shrink). Oh! I mentioned pictures: these help with fighting insurance (your doctor will send them to an insurance company) and also with referrals (I went from a private dermatologist to an expert at treating HS in two weeks. Initially he said he only had an appointment six months later, but the private practice dermatologist sent a picture and he saw me right away).
And just on a positive side note, I'm at a stage where I'm getting surgeries. They are going totally great! No reason to be afraid. No horror stories of skin grafts sloughing off, no open gaping wounds, no no no. The beauty of remicade is that it allowed my skin to heal enough that they didn't need to do the surgery where they just leave it open and let it heal over months. There was enough healthy tissue (this is in my right arm, which a year prior had basically no skin and was... well, shredded). I stopped taking painkillers after a day, I was back to work after a week (I could have gone back earlier but... time off is awfully addictive). The stitches are healing nicely, there's no new flare ups, and it's no big deal! I mean, every surgery is a big deal, but I just don't want you to feel like this is a permanent condition. Things get better and things can get better in this miraculously easy way once you get on track. You're going to be ok.
And for what it's worth, I graduated at the top of my class despite having it the worst during school, passed the bar while getting my treatments every six weeks, and dated. Turns out people are into scars (bat your eyes and tell them how vulnerable you are and you've never opened up to someone like this before ;) ). I'm a full time attorney (except for when I take weeks off to get sliced) I've got a partner with a cute face (cute butt too), and every doctor I've seen said I was one of, if not the, worst case of HS they've ever seen.
Other things to note: I tried "elimination diets" and various changes in food (no sugar, no dairy, no nightshades, no red meat, etc). Once I went to the expert he basically laughed it off- it's not dietary (and it's definitely not gluten, oy, don't even get me started on "gluten free") By all means eat healthy food! Vegetables! Protein! Definitely try to get iron (I have to get prescribed a supplement because it got so persistent when it was bad). Drink plenty of water! The healthier you are generally the better you're able to deal with all of this and the better you'll respond to treatments. Try to get the exercise your sores/wounds allow. Don't get mad at yourself if you can't.
You're going to be totally ok! This absolutely isn't forever! If you put your head down and assert yourself to these doctors, you can even be on the mend in no time. You need someone to talk about it? Just let me know. But you will not be disabled by the time you're 25 babe. Come next summer you and me both can hit the beach in bikinis, 'cause it's gonna be better in no time, and someday it'll even be over. You can make it!