Avatar universal

hidradenitis supporativa

I would like to comment one the condition HS I have had it for 12 years.  I had the sugery were they practically remove your armpits.  I had to have a skin graft were the skin was taken from my thigh.  I have not had any problems since.  It was a horrible experience, with ugly scars.  My 19 year old daughter is now dealing with the same thing.  I don't want her to have the sugery, are there any other treatments.

This discussion is related to best treatment for Hidradenitis Supporativa.
16 Responses
Avatar universal

I understand your concern. Hidradenitis suppurativa is a skin condition which may occur in puberty. This may have a genetic predisposition. This is caused by blockage of apocrine glands in the armpits and the groin. Apocrine glands are specialized sweat glands. Unlike the regular sweat glands they are regulated by hormones and other physiologic changes. They also excrete an oily or rather fatty substance which may result to the distinct body odor that comes with puberty. The cause for the blockage of these glands in cases of hidradenitis is not known. It is essential that your daughter avoid too much sweating. Also, losing weight by maintaining a balanced meal of fruits and vegetables may be necessary. Also, if hidradenitis is present, your physician may opt to initiate a trail of antibiotics for two weeks. If there is no response, local treatment such as intralesional injection of steroids may help.

Hidradenitis suppurativa may not be easily controlled. Discuss this with your physician so you and your child may be guided accordingly.
617254 tn?1240421622
Is this in any way genetic, do you think my daughters or sons could get it in the future?  I've had it in my groin area for over 10 years and would love to hear about a cure some day.
Avatar universal
my mom has it but i ended up getting it worse than she did. i had the surgery when i was 26 but now she has the lumps under her arms that are at least the size of golf balls to answer your question yes
Avatar universal
I had a similar condition - a very painful pimple-like nodule appeared in my left armpit.  Over the next few days it got larger.  After a couple weeks, another appeared in my right armpit.  I stopped using deodorant and started using Goldbond powder several times a day.  The powder reduced friction and immediately helped.  Over the last 4 weeks the nodules have stopped hurting and have completely disappeared.
Avatar universal
My father has had HS in his early 20's and out of his 4 children i'm the lucky recipient of HS. He has had the surgery under his arm pits and the skin grafts from both thighs. Luckily it hasn't come back for him. Might anyone have a suggestion to ease this condition w/o surgery. My insurance at work is horrible.
617254 tn?1240421622
My dermatologist gives me steriod shots when they are really enflamed and oozing, otherwise she gave me a steriod cream.  Nothing else works, I've tried neosporin, warm baths, but steroids are the only thing that controls it.  As soon as I get rid of one patch another pops up.  

Does anyone know if when you have the surgery, do they come back in other places or is it healed?  I'm wondering if it's worth going thru all that skin grafting.
Avatar universal
I had the surgery becuase it got so bad under my arms. My right arm, I,could only raise half way becuase of it. They do come back in other places. I would still do the surgery again because the pain I had under my arms was unbearable. I couldn't function day to day! My surgeon was an a$$hole so I went through a lot of uneccessary pain but I'd still do it all again. If I were you I'd try to find a dr that has done the surgery before. Mine hadn't so it was a nightmare with him but he was just an a$$hole anyway,but that's another story! It's been 8 yrs and I still miss silly things like shaving under my arms and actually having armpits. I wouldn't wear shorts for a long time but I eventually got over it.
617254 tn?1240421622
Thanks for telling me that.  I have it in my pubic area and don't want to do a skin graft, especially if it's still going to happen.  It already looks bad enough with the scars.  Where did you get it after you had the surgery?
Avatar universal
I get them under my breasts and my pubic area also. When the guy did my surgery he just lanced the ones under my breasts and put staples in so now it looks like ralroad tracks but once again he wasn't familiar with the surgery and was a total a$$hole. Mine are mainly in the bikini line area so if it came down to it I would do it again if got as bad as the ones were under my arms. You have to decide what's more important to you. I'll be the first to admit I had a hard time dealing with the scars afterwards because I didn't know how big they were gonna be and it took about a yr before I would wear sleeveless shirts becuase I thought people would see the scars.  You have to decide if are willing to deal with the pain and not have the scars from surgery or if you want to take a chance of not having it anymore in that area. I missed alot of work before my surgery so it didn't take long for me to make my decision. My arms were so bad, the wounds would never heal and I couldn't wear deodorant and i couldn't raise my arms all the way in the air so it was a pretty easy choice for me.
Avatar universal
I was diagnosed with HS about 1 year ago and have been through the ordeal of lancing a BIG DEEP boil on the bottom of my breast (which DOES NOT NUMB due to infection...OUCH!!) and recurring PAINFUL boils in my armpits. I haven't had any more breast issues (thank goodness!) but am still having the armpit problems. Mine seems to respond best to Doxycycline when it flares up. My flare ups seem to correspond with my PMS...it happens about 5 days before my period, so I also think it has to do with a hormone imbalance. Sometimes though, it just randomly happens mid-month. (maybe stress induced??) I put "udder balm" or "bag balm" on the boils and sometimes this will help soften the skin up so that they can drain. Yes, it is marked for veterinary use and is used to soften up cow udders (lol), but is available in your local drug store. It's cheap, seems to help and is totally safe for humans. It's very similar to "Boil Ease" and much less expensive. One tin of it will last FOREVER!!

The main reason that I am writing this note is because I am a classic yo-yo dieter and I noticed something VERY interesting during my two most recent weight loss attempts. I am 5'4' and 180 pounds at the moment and had a high weight of 198, so I am on the chunky side of the fence. I wear a size 17 in blue jeans and extra large tops.

I have tried many diets, but the only one that works for me is a high protein, VERY LOW carbohydrate ZERO SUGAR diet. (Atkins induction menu for one whole month instead of the suggested two weeks) I did this recently for one whole month (SHEER TORTURE...LOL) was very strict about it when I did it, and I kept the carbs below 15 grams a day. MEAT, EGGS, CHEESE AND LETTUCE ONLY!!! "YES" TO MAYO and ranch dressing, NO TO KETCHUP (it contains sugar) also...NOTHING WHITE...I allowed myself a very small portion of green beans or broccoli once a day. I also drank enough water to fill a lake. NOTHING TO DRINK BUT WATER...and an occasional unsweet tea with Splenda! NO DIET SODAS!! It takes the first three days to detoxify the body and then the weight loss begins! :0)

I recently managed to "stay on the wagon" for a month and lost 18 pounds without exercise. The thing that makes this relevant to this forum is that during the time that I was on that strict diet without sugar or carbs (which turn into sugars in the bloodstream) I didn't have ANY outbreaks of HS and the outbreak that I had when I started the diet faded away completely in about 7-8 days after I started the diet. My body was finally detoxified of all of the CRAP that I stuff into it every day.

I then "fell off of the wagon" after a month and returned to my normal everyday "idiot" diet of fast foods, highly processed foods and refined sugars. (and PEPSI, PEPSI, PEPSI, ALL OF THE TIME...FULL FLAVORED) What a bad girl I am!

It took about two to three weeks of the old habits to REtoxify my body before the armpit symptoms reappeared, just as bad as they were before. HMMMMMMM.......I just wonder if there's a connection......lol

I wonder how many HS sufferers there are who are carb and sugar intolerant like I am? I tend to gain weight in the middle and are an "apple" body type. I was told that I am prediabetic and have high insulin levels and high blood pressure. My blood sugars are normal.

Due to these strange reactions of my HS to the special diet, I would almost lay money on the fact that MANY cases of HS are caused by toxins in our bloodstream caused by bad diet habits and high insulin levels in the blood. Especially since some of the research I've done says that most HS sufferers are overweight.

I guess that when my pain and suffering in my armpits is worse than the sugar and carb cravings, I might actually break free from this HORRIBLE disease. I would love to see an experiment with about 100 people with HS on a diet like this one to see if my guess is correct.

Maybe someday I'll find the willpower to make the permanent diet/lifestyle change and test my theory over a longer period of time. :0)

I hope I help at least ONE person with this post! That would have to be someone with better willpower than I have, but I'm sure that they are out there somewhere...

617254 tn?1240421622
Thanks for the info!  I too am built like that, I take bactrim and accutane for my HS, seems to help.  The bactrim more so, I take it every day to keep them away.  I hadn't had a boil for about 3 months, so my dr took me off of the antibiotic and within 4 days I was starting to itch, took it for 3 days and it's almost gone...Nothing else has worked for me, I've heard that losing weight helps it a lot, I am on a lot of pain meds right now and can't diet harshly or do a lot of exercize so my weight is staying about the same.  

That would be an interesting study, Atkins seems to be the only way I can lose weight too.  Maybe there is a connection.

Avatar universal
I have found, through WebMD, several crème’s and pills that not only help reduce the pain caused by HS, but also heals the areas affected. The crème that I would recommend is Terrasil. I have not tried the pills because I take enough already, but the pills are: Supprical, Trendeton, Spranofax, and Suppuratec. Do your research of course, but it helped me. Good luck.
617254 tn?1240421622
Thanks Vette, I for one will check them out.  I'm assuming they are by prescription?
Avatar universal
Incredible post! Thank you very much.
Avatar universal
Has anyone had any good experiences with Doryx?  My dr. gave me a script about 5 months now. i still get them sometimes but a lot less than before.  Im scared taht the guy im dating is going to see the ugly dark scars or feel the ones i have on my groin that he will run for the hills.
thank you for the post about losing weight.. im going to try that as well. Im top heavy and gain most of my weight in my middle..
Avatar universal
I have had 10 wide excision surgeries in the groin....2 of them very extensive with some skin grafting.   VERY painful and takes a long time to heal.   And I still have lesions....it only gets rid of it for a little while.  Mine always comes back....been battling for about 12 years!
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