Pimples/boils on inner thighs/waist/etc? It’s not your fat, it could be Hidradenitis Suppurativa.

Abby writes:

As a child I used to get frequent heat rashes, so it wasn’t particularly concerning to me when the skin generally affected by heat rash, my inner thighs, seemed to constantly inflamed. But the inflammation had changed, and my skin began to break out in what looked like pimples and boils. The change happened at about the time I hit puberty. I let it go.

Around the time I was 15, I developed an obsessive-compulsive handwashing problem and was sent to the dermatologist. I showed her my hands and she wrote a prescription for some heavy-duty moisturizer and told me that if I didn’t get the handwashing under control, I was headed to counseling. Just as an afterthought, I showed her my inner thighs. Her response? “It’ll go away if you lose weight.”

That day I took on a lot of shame. The dermatologist didn’t think to connect the handwashing to the fact that my inner thighs looked like they were ravaged with infection. Furthermore, my mother had been diagnosed with a rare autoimmune disease. We had medical encyclopedias galore, and when I looked up skin conditions in them, as I often did, I could only conclude that I was dealing with a some very long-standing infection that miraculously had not killed me. In retrospect, I can see clearly and compassionately that my handwashing was a way that I tried to protect my mother from whatever was going on with my skin.

I never told my mother about my skin. During my teens and early twenties, what at first affected only one area grew and the lesions came to affect my beltline, buttocks, underarms, and breasts. But after that day at the dermatologist, I didn’t speak another word about my skin until I was 25.

At 25, my skin started getting really bad. What had begun as pimples and boils turned into abcesses. I decided to go in for a physical and finally show my skin to a doctor again. While I would like to say that that act took courage, it really took fear. The doctor didn’t know what I had, but after doing bloodwork, sent me to a rheumatologist. The rheumatologist saw nothing but I showed her my skin. She said it looked like Hidradenitis Suppurativa. I remember not being able to really hear after she said that; I couldn’t believe someone had just told me there was a name for what I had had for so long. I couldn’t believe that I wasn’t the only one who had it. I went to a dermatologist for diagnosis and he knew as much as there is to know about it, which isn’t that much, and started me on anti-androgen therapy. My skin improved dramatically in the sense that I stopped getting abcesses, but it won’t ever go away, not even if my thighs never rub together again. One of the heartbreaking aspects of this disease is that there is no consistently effective treatment. Another is that no one knows what causes it.

What did go away is the shame. If anyone out there has HS and has been told it’s because you’re overweight, you were told wrong. Skinny people get HS. There are a lot of us fatties with it, but it’s not caused by being overweight. It’s also common to be told that HS is caused by poor hygeine. It isn’t. While the medical community devotes almost no research to this disease, the little research that has been done suggests that hormones might have a hand in the disease process. It might also be autoimmune, a response to food allergies, or abnormal hair follicles.

Every person who has suffered in silence and shame needs to know that she has HS through no fault of her own.

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30 Comments

  1. Trabb's Boy

     /  September 11, 2009

    Oh, Abby, thank you for sharing that! I do not have this condition, but I relate totally to the shame induced by your doctor. On a much more trivial level, I finally got up the nerve to show these strange marks that had developed on my hips during puberty to my mother, who said “Oh my god!” and I just muttered it would probably go away and spent the next ten years figuring I had varicose veins, having never found out about stretch marks.

    Doctors and parents could both be much more sensitive to how easily shamed young teens are. It’s an age where everything about your body is frightening and shameful, and openness, kindness, and reassurance can make a huge difference in a girl’s life.

    I wish you all the best, and hope that the medical community does find a treatment in your lifetime.

    Reply
  2. pandoradeloeste

     /  September 11, 2009

    I keep in touch with an online friend who also has HS (in a different country with some funky nationalized health care, so I’m not sure whether she receives anti-androgen therapy). She also got doctors giving her the runaround for years when she first started getting abscesses on her legs – they were strangely uncommunicative and the only way she found out her diagnosis was by sneaking a peek at her chart. (I’m not sure if they told her to “lose weight and it’ll go away” – I suspect they did, because she’s not a size 2.) I’m not sure what it is about HS that makes doctors act like assholes, but I’m sorry you got caught in it as well.

    Reply
  3. Shelli4Sytira

     /  September 11, 2009

    Oh I know how you feel I am not overweight but my teen daughter has struggled her entire life since about age 4 with weight issues. I also have 2 boys but have always been at a normal weight. They all ate the same so why? Then at age 10 she came home from camp with these abcesses under her arms and it took over a year for her to be finally be diagnosed with HS. At age 13 she had a paraovarian cyst as large as a softball removed and then at age 14 this may after I yes I discovered that she had parathyroid disease she had to fly to Tampa Bay Florida to have a parathyroid tumor removed. The surgeon said it was groing since yes age 4. I had pilled all her medical records and looked at all her bloodwork thats when I saw the abnormal blood test.Over 10 doctors just overlooked it and dismissed it!!!So I guess my point is we have to be our and our kids advocates!!!Also everytime my daughter has been hospitilized reguarding health issues I can see how they treat her about her weight when I they would always say to her “Your a big girl” They were never ever looking for any other reason she was overweight other than food or lack of exercise. I am still researching to find help with her HS she suffers daily because it is now in her groin area, under her breasts, armpit area and also in her belly area. I will continue to be an advocate for her, I want you to know you are a beautiful courageous women and I apprecite the time you have taken to open up and tell your story!

    God Bless
    Michelle In California

    Reply
  4. Dale Rickwood

     /  September 11, 2009

    Abby,

    From one sufferer to another…… great post! Congratulations! I think what you have said is awesome. And as well, yet you have opened up another avenue to spread the word! If everybody spoke out as you have, the world would be buzzing with news and information about the “Hidden Disease”. If only huh? Anyway, just wanted to say that that was just a really great post!

    Reply
  5. Samantha

     /  September 11, 2009

    I’m wondering if this could be my problem. I asked a doctor about the boil-like pimples I had developed on my legs and was told “large thighs rub together, you might want to use some powder” as though I was obviously an idiot….

    Reply
  6. Ah, another future post that I don’t need to write now because someone else got to it first! I’ve been meaning to talk about HS for some time now.

    A lot of people with strong insulin resistance get boils and abscesses. Whether these are officially HS or not, I’m not sure, but I suspect so.

    I know my bout with these boils got markedly better once my borderline hypothyroidism was treated. I still get them, but not nearly as badly, and I can tell if my thyroid meds need adjusting because I start getting more of these. I don’t have any research tying HS to hypothyroidism, but I suspect it’s part of the whole metabolic systemic dysfunction, and tied into hormones as well.

    Treating the insulin resistance with metformin or herbs may also help some folks. We don’t know if insulin resistance CAUSES these boils or if it’s just associated, but again, there is often a connection.

    I also have found recently that acupuncture can help reduce the frequency and severity of these boils. (They don’t put needles into the boil but in a point far away from it.) They talk about it in terms of “letting off heat”….I just roll my eyes and nod, because whatever they do and for whatever bizarre reason they do it, it really does seem to improve things, esp with a really bad outbreak. So that might be worth checking out as well.

    Thanks for bringing up an important subject.

    Reply
  7. La di Da

     /  September 11, 2009

    Wellroundedmama, I had a similar issue. Working through my medical history with my awesome thyroid doctor, it seemed like I had a milder case of HS (or what looked like it) until about four years ago, when my androgens took a nosedive due to hypothyroidism, and they cleared up. I too got told “lose weight and it will go away”.

    Reply
  8. LuckyLuckyGirl

     /  September 12, 2009

    Just showed this to a friend of mine that has been having boil issues for years now. Pretty much spot on, what with checking out the wikipedia page and googling images( not for the faint of heart!) (well, spot on at least as far as internet diagnosing goes). I think she’ll go see a dermatologist soon. Thanks!

    Reply
  9. Mina

     /  September 12, 2009

    OMG that sounds like exactly what I get under my breasts, and re what wellroundedmama said, I have PCOS too. I am going to ask my GYN at my annual in November. It makes wearing a bra crazy painful… I take it off as soon as I get home.

    Reply
  10. Thanks for sharing your story. I’m 36 and have had HS since I was 12. While I have what would be considered, in my limited research, a “mild” case…well. With this disease, mild is pretty painful too, particularly since my problem area is what you might call, ahem, very sensitive. I can’t begin to imagine what someone with a moderate or severe case must feel like on a daily basis!

    Unlike you, I have never had the courage or fear to discuss this with any doctor, fully expecting to be told that it would be fine if I lost weight. Even though it began when I was an only slightly heavy 12-year-old.

    Reply
  11. Sarah

     /  September 12, 2009

    I too have HS. I got treated for it for years without ever knowing what it was. The first time I went to doc about it, I asked because it was a lump under my arm and I wanted to make sure it wasn’t breast cancer. He said it was just an infection and gave me antibiotics. Because the script was for 2 weeks I asked more questions, and was then told it was chronic. I was only 15 at the time, so I didn’t know that I should ask even more questions. Even at 24, when talking to my GP about treatment options, she never gave me a name. It wasn’t until almost 10 years later that I got the name for it. Strangely enough no doc ever told me it was because I was fat and dirty – though I’ve heard plenty of others go through that. Personally I strongly suspect its auto-immune. I’m lucky though because its always stayed at stage 1 for me and frequently goes into remission for years.

    Reply
  12. F- me, is that what the hell I have?? I’ve always just assumed it’s because I’m fat, skin rubs together, etc, except that it’s only in the past few years appeared between the boobs…hmmm…and i would appear to have a mild case of it. But, um, wow. I should add that I also have PCOS, extremely bad dandruff, and acne rosacea – yay me.

    Reply
  13. Abby

     /  September 13, 2009

    Sweet! I’m so glad others can recognize themselves in what I described! I forgot to mention that I sometimes get the lesions on my yoni, too. And very small white bumps on more places than I can name. I co-moderate a support group that has over 5000 members right now. If you’re interested, the link is: http://groups.yahoo.com/group/Hidradenitis/

    Reply
  14. q_t

     /  September 13, 2009

    I think it’s wonderful that you’ve made this post. I was fortunate enough to have a dermatologist who knew what it was right away and didn’t suggest that my weight had anything to do with it, but family members have tried to suggest that it is because my breasts (the site of my abscesses) are large and that “losing weight would do something about that.” The misconception that being overweight can cause this is such a damaging one.

    Reply
  15. Oh. My. God.

    I have this – in a very mild form, but I have this. And when I went to the GP – years ago, when I was still very shame-filled about my body and very much in awe of the Big Medicine Man – guess what he told me?

    With a look of disgust he glanced at my underarms and told me that these were normal for “Fat people who never seem to be able to wash themselves properly”.

    I’ve carried that shame ever since. And to find out there is a name for this, that it isn’t caused by my weight (I knew it was never a hygiene issue, despite what the Doc said)… I feel happy and angry all at once. Those arseholes! How *dare* they!

    Reply
  16. Sonya

     /  September 14, 2009

    I have to say I lucked out with the best doctor regarding this condition. I just found out in July that I have it and was told, in the nicest terms (honestly), that weight loss might help clear up the abcesses. I have to admit that it wouldn’t hurt me to lose a significant amount of weight, but she didn’t look down on me or use inappropriate word choices. She just mentioned that excess fat tissue might mess with my hormone levels, and hormone levels likely tie into HS. She went on to talk about hormone levels, fat tissue, insulin resistance, autoimmune involvement – whatever there was to know about HS, she knew it. And she’s a family practice doctor who wasn’t even my regular doc; I just went to see her that day because my regular doc was booked and I was in too much pain to wait. I can’t believe I just happened to see her and she just happened to know what it was. I also couldn’t believe how easy it was to talk to her about it and how nonjudgmental she was about personal issues or weight or anything at all. I’ve been to doctors who like to mention my weight for everything from stubbed toes to strep throat and some of them are downright mean when they do it, so I mean it when I say I lucked into the best doctor.

    Thanks, Abby, for getting the word out there about HS and the fact that it’s not a result of being overweight.

    Reply
  17. It always floors me that so many clinicians can be complete asshats. Anyone, regardless of weight or body type, can develop skin infections: bacterial, fungal, you name it. I’m beginning to wonder just what it is doctors do in med school because it sure doesn’t seem like they’re learning anything useful.

    Reply
  18. Dee

     /  September 15, 2009

    I have a theory about doctors and why they can be such asshats. I think that the medical profession attracts a certain type of individual with a particular type of personality.

    This is the kind of person who enjoys being in control, being looked up to and respected, even possibly feared, have a greatly inflated perception of their own knowledge, operate well under extreme pressure, and feel the need to help people, even if those people don’t want help. I know many doctors in my personal life, and they are all narcissists to some degree.

    Obviously not all doctors are like this, but a significant proportion are. Just like the law enforcement profession tends to attract violent individuals, so the medical profession attracts narcissistic control freaks.

    Reply
  19. stacy reeves

     /  September 16, 2009

    hello i too have hs (since i was 16 now 33) and am overweight. i had a breast mastitis when i was pregnant that has never gone away. the drs at uams in little rock have been “fighting” it with antibiotics for the last 3 and a half years. i am tired of taking them i just found out the antibiotics that they gave me when i was prego has now ruined my sons teeth. ne way i went to a dermatologist at baptist hospital and i told my mother if they said anything about antibiotics or me being fat i was outta there. 1st thing was well if you loose weight we can control…. it so i asked her if i were 125 lbs what would she say first then she argued with me that she never meant that it was because i am fat then she says that i can take these antis i told her i had been on antis for 3 years and i wasnt going to take them anymore and she got snappy with me and said she was doing me charity because i dont have insurance and that she wasnt going to take my attitude. needless to say i just left and am about ready to just give up and deal with it and not go to the dr about it again.

    Reply
  20. ZombieGirl

     /  September 21, 2009

    I’m a 16-year-old female, and I am positive I have HS as everything I’ve read about it (and there isn’t really that much out there) fits me to a T (even the google images). I’ve had it since I was about eleven or twelve and when I told my doctor about it, I was told to lose some weight and it would go away. I was also told that I had poor hygiene even though I took two showers a day and did exercise and ate well. I’ve always been overweight (currently 5″8/178lbs.) and it hurt so much to be told that it was because I was fat. After that incident, and a few others unrelated to the HS but which I was also told to lose some weight fatty, I refused to go to that doctor anymore. I’m so scared of going to another one and going through all that crap again. The scaredyness of going to the doc is outweighing the horrible amounts of pain I go through with the abcesses. I just take painkillers, wear clothes that won’t show under my arms or bikini bottoms, and bandage it up and hope that I never have to go through that again.

    It sticks in your mind, though. I feel your pain, OP.

    Reply
  21. Jackie

     /  September 30, 2009

    I’m not sure if this would be of any help. Monistat makes a line of products called Soothing Care. They’re great for drying up areas of your body that may be prone to heat rashes. I’m wondering if it might just help you in general. They use micro-fine cornstarch powder in their products.

    Reply
  22. I don’t think this is what I have, but I do have skin issues that no doctor has been able to figure out yet. I’ve got dry, flaky patches along my hairline, on my cheeks (on either side of my nose), beneath my breasts, along my waistline, and on my shins. My GP prescribed one thing, and when it didn’t clear, sent me to the dermatologist, but we had no luck. The endocrinologist insisted it would clear itself when I lost weight (ha!) but I stopped seeing him when he proved himself an asshat. It’s not painful, just embarrassing, but most doctors seem to think it’s caused by my fat.

    Reply
  23. unknowwn

     /  August 23, 2010

    i am pretty sure after reading this i have HS which really sucks and im scared to see a dr

    Reply
  24. kate

     /  October 2, 2010

    when i was about 8 i stayed in the hot tub for a really really long time and broke out in a painful red bumpy rash.
    now i am much older and due to a hospital refusing to allow me my thyroid medication (long story) i doubled in size. now i am a size 8-10 upon walking with my friend i felt my unclothed thighs rubbing together painfully. this causes a rash due to heat and friction.
    It does not hurt my feelings to know my thighs are large. marilyn monroe was large. i am still beautiful but damn these big boobs and thighs make exercising uncomfortable! i try to wear sweats or soft fabrics not naked thighs and i don’t run because of my big boobs. i wear bras now even light support to bed no underwire etc no prevent sagging.
    so big ladies you are not inherently bad or ugly but insist upon thyroid medication. start small if you are afraid.
    i feel so happy and energetic now that i take mine. before i was exhausted all the time. barely getting out of bed. borderline hypothyroid. look for a thyroid scar dumb overly confident nurse should i sue that hospital? i have never been more out of it and confused in my life. i hate you dumb ass bitch nurse tried to say i had a psychitric problem. look at the skin bitch

    Reply
  25. a dude

     /  March 9, 2012

    Is this hs only a woman thing cause Im a big dude and for years thought it was a std and I finaly thought I would face my fears n look for my std but nothing so I investigated and I have all the same symptoms signed: Freakd Out am I a woman lol

    Reply
    • vesta44

       /  March 9, 2012

      Dude – I don’t think this is a woman-only thing, it can happen to men too. If you have a doctor, talk to him(her) and see if you can get any help there. If not, you can try the suggestions given in the other comments and see if any of them help you.

      Reply
  26. Mich

     /  May 28, 2012

    This is what I have I am sure. Thanks to whoever posted the link to the yahoo group, I just joined. I’ve had it for 4.5 yrs, but possibly my whole life. I used to get horrible pimples in my groin, especially where the underwear met the skin in the inside of the hip, when I turned 20 it went away, but went to my armpits, and it took 3 doctors to determine there was something wrong, but the last one never said anything about what it was, but said I should see a surgeon. The surgeon said the same thing that the first one did: “there’s nothing there, it’s all in your head”.

    They came back all over 4 yrs ago: breasts, chest, armpits, hips, sides, 1 in the elbow and 1 on the knee. I tried to see a doctor about it when I was away from home but he said it was caused by skin rubbing (what does my elbow rub on, idiot). And last yr my reg. dr. said it was carbuncles, but the pictures and description of it don’t match (carbuncles appear on the back). So I knew it was something else, and I keep very clean and use a salt based deodorant called Crystal.

    Thankfully now I may have an answer, and since I also have PCOS (which I’ve discovered other ppl have too) that may be the ultimate cause of it. And thanks to another post/comment, PCOS can cause celiac, which seems to also be true for me, since I’ve had remissions on g-free diet, or at least wheat-free.

    Reply
  27. please i have this really bad and i wish i could get rid of this but their is no way that what you said but what if i got medicaid

    Reply
  28. Oh my god thank you so much for posting this. I am in tears! I have suffered through this for over ten years and was always told by my doctor if i lost weight it would go away. That is was a “fat thing”. To FINALLY have a name for it…to finally know it’s because i’m “dirty”….thank you so so much!

    Reply
  29. Checking the comment dates, this article has been helping people for 6 years now.

    I feel I have a mild version of this. I have little white things that are almost pimples at my belly button, and occasionally on my breasts. I also get boils about the size of dimes at times, usually one at a time, months apart, on my breasts, underarms, and in more intimate places. When I was a teen and got my first boil, I was terrified it was herpes, passed down from my mom on the toilet seat or something, since I’d had no other opportunity to get anything. After googling images and symptoms, I finally realized that wasn’t the case, and soon after, it popped and faded away into memory. Since then I’ve had them every few months, and although I’ve never had the courage or doctor appointment already set up in time to get it checked out, I kept searching to find what it was. I found so much information on pustules and boils, and everything said it was a cleanliness or weight issue.

    I have been wondering if I have a vitamin deficiency or thyroid problem, due to low energy levels. Blood tests from when I was in my teens apparently showed no sign of it, although they did say I was anemic. The doctors down here are well known for their incompetence though, and could very well have ignored it. Now I’m 27, and finally working to lose the weight I gained my whole life, as well as fight to get the energy that I see normal people have. With this article and some of the comments as incentive, I’m going to call my doc tomorrow and see about getting a blood test for my thyroid scheduled.

    Thank you so much for this post, it may help change my life!

    Reply

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