Have You Ever Heard Of Hidradenitis Suppurativa?
I went to the dermatologist because I had an abscess on my leg and it wasn’t the first time I had one. I asked her what could be causing it and she said, “You have Hidradenitis Suppurativa” I had never heard of it before and I did a little research on it and I don’t think she’s right. If I do have it, it’s a mild case. How can she even glance and me and know what it is? Is there a test you can take or just something they look at and diagnose?
H.S. is usually hard to diagnose and many doctors misdiagnose it. I went through three doctors and a surgery before I was diagnosed. It’s classified as a rare disease because of the lack of reported cases and doctors misdiagnosing it. Basically, to put it in simpler terms, it’s a condition that affects your endocrine glands, i.e. anywhere you sweat. Your skin produces small holes (if you do have H.S., these holes should be visible which may have been how the doctor diagnosed it just by looking), the holes can look like little dents. The holes act like a wound allowing bacteria to enter into your body. The bacteria then causes an infection which leads to the abscess that you speak of. It can be very painful.
It’s also known as a progressive disease which means that as you get older it supposedly gets worse. It shows up in three main areas on most people, the groin (it’s pretty common), the chest (around or under the breast), and the underarm is another common area. You can get it in other areas even if you just have it in one at first. The good news, if you can call it that, is that you should expect it to reverse itself around menopause.
However, there are some things that you can do about it and some tings to look out for in the meantime. And its certainly not the end of the world. Many doctors reccommend losing weight if you have any to lose and I’ve had doctors prescribe me painkillers and antibiotics to take when I feel an occurence. I dont reccommend taking either one. I never took them simply because I don’t want my body to build an immunity to the antibiotics and the painkillers can be addictive. I did lose some weight which helped. Also DO NOT LET ANYONE SURGICALLY REMOVE ANY OF THE AFFECTED AREA. It doesn’t help because H.S. is a genetic condition (not even really a disease) and it will reoccur even after surgery. All that surgery does is leave you with scars and can create more of an infection problem for you. Make sure to be proactive. Avoid stress, that’s probably the most important thing. I always got mine when I was stressed out, or under alot of pressure. The more stressed I was, the bigger and more painful my H.S. It usually felt like soemone had a hot needle and was slowly moving it through my chest with varying pressure. Not fun! But the condition can also be very mild and hardly bother you at all. I get alot of that now. Another thing to do is to keep potential areas clean and dry. When I go workout or when I know I’m going to be sweating, I have a little trick. I put antibacterial soap on the area to try to kill some of potentially harmful bacteria caused by my sweating. IT WORKS! Asprin is good to take as well because it’s an anti-inflammatory and pain killer. Overall good health is essential as well, build up your immune system with the right foods and vitamins, help your body fight.
Hope this helps and just know that its a misunderstood condition and its hard to explain and there aren’t very many people who will understand the extent of it but just be sure to take care of your own health and be proactive about avoiding occurences.
Is it “higher” or lower on your leg? I know hidradenitis can be on the thigh and higher into the groin, but never heard of it being any lower.
There is a range of severeness. Some people have it easy with mild, infrequent cases and some have it all the time. The only test I’m aware of is for the doctor to test the bacteria by taking a scraping. It won’t specifically say its hidradenitis but it can help identify the bacteria. If possible, see an infectious disease specialist (your doc can refer you). They should be able to definitively tell you, so you only have the one spot.
It does not appear to be Hidradenitis Suppurativa, which is a
chronic suppurative and scarring disorder of the Apocrine gland-
bearing skin areas, chiefly the axilla and anogenital area.
You should consult another Dermatologist. Check for Diabetes.
Everyone has different experiences with Hidradenitis, So you have to do what is best for you. Surgery was great for me. And being that this is an inherited disease surgery also worked for my sister who has a much worse case then I do. If this is Hidradenitis you need to start now figuring out what irritates your skin and what you can and can’t do. And the most important thing is to keep your stress level down as much as possible. Good Luck and for your case I hope it is not Hidradenitis.
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Hi, I’ve had hidradenitis since puberty and I did have surgery and it did help for 7 years. The worst of it was under my arms. I have had it other places as well though, groin, under breast, scalp all those places healed without incident. Even another one I had under my arm healed perfectly. But now I have one like the ones that necessitated surgery. If my doctor recommends surgery I will get it done again. I’m thoroughly convinced that my diet helped me be free of the ones that don’t heal. I started eating crap again, for at least 6 months and I am finally paying the price. I obviously agree with what you said about eating right and exercising, but I have this feeling that you don’t have a very severe case of HS. And why would it reverse itself around menopause? And would men experience the same reversal with andropause?
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I have a 23 year old daughter with HS. (we have a family history of it) We are trying to find a doc to treat her. She has several open abscesses which are draining (have been open and draining for a few weeks now). The are about a half inch or larger across and wide open. We’ve been to most of the area hospitals they say its out of their league, never saw anything like it, or tell her its ingrown hairs on her groin and she shouldn’t feel this much pain. The pain is an excruciating pain which she says is getting worse by the day. One doc told her she needed to see a surgeon as she has numerous sinus cavities that will need to be drained. He was not able to refer us to anyone but did admit her for a week with dx severe abdominal abscesss, had her on antibiotics and pain medication, helped while she was there but a day later it was back with a vengance. When I called the surgeons they all say they don’t know enough about it and wont touch it. We are near Bucks County PA I am thinking of taking her to Jefferson in Philadelphia. My concern is she is frustrated with doctors and hospitals, U of PA doc told her, “I never had anyone in this much pain over a pimple or ingrown hair” and literally laughed at her.” Does anyone have any experience with Jeff and treating HS? Any suggestions on how to help the pain? Hot packs worked in the very beginning but do nothing now. Thank you so much!! Wendy
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