Hidradenitis Supporativa

I'm 29 and have had H.S since the age of 13.I've had cysts/abcesses on all pressure points of my body(neck,armpits,thighs,buttocks,groin,breast and back).I've also had my apocrine glands removed i can say this the surgery has helped as far as the armpits are concerned but i still have trouble in other spots.The unfortunate thing with H.S. in my experience is that there is absolutely no cure and the condition is so rare that most doctors haven't heard of it and there is currently no research being done on it.Stress in my situation does contribute to the flare ups and it does affect your livelyhood in so many ways.For those who work and suffer with the condition,if infact the condition does hinder your work,Hidradenitis is a listed illness that disability will cover.For the lady who had the hysterectomy and wanted to know if H.S. is linked to hormones in any way.In my experience,i personally think it does because i have polycystic ovarian syndrome,i also have what they call metabolic disorder.Meaning i have high insulin resistance=my body produces too much insulin so therefore,i have to take glucophage and byetta for type 2 diabetes which i don't have.And i also have to take Blood pressure pills for a condition that doesn't exist.The reason i have to take the pills is because i'm at a high risk for a stroke.For the person who asked about whether or not they should go on accutane.Everyone's bodies adapt differently to different treatments and medications but in my personal experience with accutane.There are great risks as well as side affects.For instance,i suffered with charley horses every morning as well as mood swings.I mean i would be fine 1 minute and bust out crying the next for no reason at all.You have to have bloodwork done every month before getting a new supply because accutane has been known to cause liver problems.Before they give you accutane,you will have to take a big book home to read,then you will also have to sign contracts pertaining to the meds.Atleast i did,i'm uncertain if that is in every case or if it was just because i signed up to get the medicine free from the pharmaceutical company.The one bad thing about H.s. is that unfortunately any cultures that are taken do not grown outside the body so therefore, they don't exactly know what kind of antibiotic to prescribe for the infection.I've been on penicillin,clyndamyacin,keflex etc. none worked.And for some strange reason every doctor i go to wants to always prescribe Bactrim Ds.Doesn't work!!!!!My question for the doctor is this....being that you really can't treat Hidradenitis with antibiotics.If and when cepsis or however u spell it occurs,how is it treated?And why isn't research being done?My inquiring mind as well as everyone elses would like to know.Last but not least, why are so many doctors uneducated on the condition?I mean,i've had to educate so many doctors and nurses on the condition that they asked me when i was going to nursing school.Also i would like to add for those suffering with this illness,I'm currently seeing an endocrinologist.I am now being tested for a condition known as Cushings Syndrome.And as the person stated ,there are many people out there with the same condition,we are not alone...there is someone out there who can relate to what your going through.Hidradenitis can be moderate to severe,it does not affect everyone in the same manner.Removal of the apocrine glands did help with my arms,the only bad thing is that the nerves are now dead in my armpits as well as the back of my arms.There is no guarantee that the surgery will be a success but it is definately worth a shot.Please check out and join the group @ yahoo.Its very informative.....u will have the chance to correspond with others who are going through what we are going through,there is also information on filing for disability , links to other sites as well as medical information.Thats all i have to say for now,i hope this information has been helpful.If  anyone has any additional information pertaining to this illness,please share it with us.You all are in my prayers...Be blessed.


This discussion is related to Hidradenitis Supporativa???.

[Brenda941]

I have been deal with recurring boils on my buttocks for 10 years (starting  at age 13). I was so ashamed and thought I was the only one and never told anyone and did not see a doctor until recently. I have not been diagnosed with Hidradenitis Supporativa but after searching the internet and reading about others I believe I do have this condition. The last doctor I seen was about 1 month ago who gave me antibotics and a wash to use in the bath, which has not helped. I go back to see the doctor next week and I am going to say something to him about this. My buttocks is the only area I ever get them, and I always seem to have 1. I have had problems with depression and I notice that when I am depressed that is when I seem to get them the worst. This has really had an impact on my personal and romantic relationships. I have been with my current boyfriend for 5 years and when I first met him I never wanted to be naked in from of him in fear of him being grossed out. He is very supportive and I am now more comfortable with him, but I still have a problem wearing a bathing suit to the beach. I am really glad that I have found that this is not just me suffering from this condition.

[caroline47]

no it is not just you and wear that swimsuit to the beach - I do, i just cover up with a dressing - dont worry what people think. And i find it very interesting what you say about depression I think you could be right.  Stress too.   I am fortunate in that, after being misdiagnosed by doctors/nurses for about 18 months and being offered and refusing 3 month courses of antibiotics, I have been diagnosed by a dermatologist as having this disease. By fortunate I mean at least I know what i am dealing with now and had the  medical insurance to cover me as no way would I have got a referral to a dermatologist on the NHS - that was clear.    I was actually off sick with this for the first time last week, as the boil under my arm was so big and painful i could hardly move.  Then it took 2 days to drain.  I have had it for 18 months so it seems to be getting worse. I have it under arms, sides and top of breast and groin area.   Started a few months after my final period at the age of 45.  We need the medical profession to get working, take this seriously and stop misdiagnosing.  Good luck.

[BhumikaMD]

Hi,

The nodules of hidradenitis suppurativa may need to be drained in the emergency department, particularly if they are very large, fluctuant, and painful. Antibiotics are indicated if cellulitis or fever is present, and you should get admitted if you have fever, etc.

Surgical consultation may be obtained for removal of sinus tracts, curettage, and exteriorization of the gland. Excision and skin grafting may be helpful for severe intractable cases. Also, surgery should be considered in early cases because the area to excise is smaller and less damaged from recurrences. The CO2 laser has been used to strip away glandular tissue.

Tetracycline and erythromycin may be helpful on a long-term basis, and cephalosporins often will help in acute cellulitis. On a short-term basis in the emergency department, dicloxacillin is considered a good choice. Topical products, such as benzoyl peroxide, may be helpful. Topical and intralesional injections of corticosteroids are sometimes helpful.

If the symptoms still persist, consult your skin specialist or dermatologist.

Let us know about how you are doing and if you have any other doubts.

Regards.

[caroline47]

Thanks for that information which is so helpful,  information is power.  I will most certainly bear it all in mind, and I am sure other members will find it useful. Particularly your comments regarding the early intervention surgery.  Lets see how it goes for me. Following my diagnosis the dermatologist has prescribed various lotions and potions and a follow up appointment in about a month and I am currently taking antibiotics - flucloxacillin - to attack the boil and it does seem to be healing up (I certainly feel much better this week). Just as an aside I had worked out myself prior to diagnosis that antiseptic soap - eg. Valderma - seems to keep it down.  Thanks again.  

[b0sslady2001]

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...

Marci

[fran312]

Marci, in regards to your comment about most HS suffers being over weight. The diet does help that is very true. But its also because we sweat more in those creased areas. I have been an HS suffer for 19 years. I wasn't diagnossed until 2 years ago. My godmother (HS suffer for 40 years) has no arm pits. The DR.s are talking about removing my sweat glands.