hidradenitis suppurativa ... what works for you? (pregnancy, arms, doctors, breasts)

[mysticxhobo]

i meant to say: do NOT let this disease take control of your life. the best and most fundamental characteristic of human nature is that: 1. we can learn and 2. internally we all have hope. therefore do not lose hope and work hard to get this problem solved. dont give up and dont be ridiculous by saying things like "people always want to blame weight". if you say that then blame yourself. you gotta go hard. but if you are in servere pain pray to God (not the wind, the sun, or some arbitrary spirit, the one true God that created us all) to get out of of the pain and once you are get to work.

tumeric, gym, antibotic, vitamin c.

[FireGlowAJ]

HI..I had surgery....its good to have a clean slate afterwards and it does give you a new drive to manage your H.S. more aggressively and consistantly....however I still have flare ups and its just the same as it was before only the gross sinus tracts that had been there are gone....but still getting scarring from new ones.

I don't know where you have it...but I have it in my groin..it was a very painful surgery and recovery took a lot longer than I thought. Now my surgery was pretty intense as I had a lot of skin removed..I think if it had been less or one side at a time..it would have been less crazy.

So here's what i would say if you're trying to decide if you should do surgery...if you're going in with expectations of solving HS and being all better...don't do it...get better at managing it first. ONce you've got a regimin that's helping and you know you are actively managing it as best you can then think about surgery. Second, know its a long process to heal and get to a point where you feel normal again. And if its in your groin area...be prepared to be comando for at least 6 mo's! lol. Then go into it with the expectation that you're just taking away the damaged skin and then managing future flare ups on a clean slate. IT is not a solution.

[Freemee1]

I had several surgeries due to hidradentis and I must say it was not an easy process but my arm was the most successful. Have not had a problem since. they removed my sweat glands and I will never grow hair underneath again. But I'm satisified I don't have to wear deoderant anymore. debating about doin the other arm due to the painful recovery!

[Freemee1]

All the above! My hs never gives me a break. It moves from one arm to the other, my butt to my vaginal area. Crazy thing is I look great on the outside. I only get depressed when the pain becomes unbarable n that's when its comes to a head n is about to burst. But luckily God recently brought me a great guy who is with me every step of the way n takes care of me. He is my doctor when I don't feel like seeing a real one. Also, I'm goin to a dermotologist monday. I was referred by my surgoen! I shall return n tell yall how it went!

[tiffany4435]

Originally Posted by YummyLizzard

I feel so bad for all of you, I have been suffering with HS now for 6 years. I started getting flare ups just 1 year after I got married. It has been nothing but Hell! Not just physically but emotionally as well. I am very lucky to have such a supportive husband who has stood by me through 2 years of several different antibotics, two years of acutane,8 months of humeria, and 4 months of rhemicaid treatments.... I am now opting for surgery but I am very worried about the results.........I see another plastic surgeon on January 31st. I have already had consultations with two other plastics and one general surgeon, and I keep getting mixed opinions.....

I just had the surgery under both arm pits, So far I am glad I made the decision we will see how it turns out, but being pain free for the last two months has been amazing!!!!!

[cbbartelt]

I'm on my 10th year of suffering with H.S. I've been on and off antibiotics for the whole time. I have been officially recommended to a surgeon, but honestly that is never going to happen. I know that when the surgery is done people don't get breakouts in that spot anymore, however, for me having large sections of my skin removed would be worse than the disease itself. I have breakouts on both inner thighs, the pubic area, the butt and my left armpit. That surgery would take well over a year to recover from. Research has shown that antibiotics are nothing but a bandaid for those of us with HS, it's a short term solution when things get dangerous, but when you've been given them a lot like I have the infections become worse because they become antibiotic resistant and you're body has less and less good bacteria if you're not taking probiotics. I've done a lot of changing my diet, I recently did a food sensitivity panel which has seemed to help. I've also found out that my hormones are messed up and working on that seems to make at least some difference.
However, some research gives the idea that the disease may actually be autoimmune which makes sense since nothing really helps and the abscesses are a sort of inflammatory response. I am working with a naturopathic Dr. since no MD has really helped and we're going to start some new stuff that has helped with people with things like lupus. For me, I've had a lot of negative experiences with MD's and my HS and I'd rather try the most conservative thing first.

[teeball]

I have had this disease for many years, finally diagnosed 3 years ago. 61 y/o w male, forced into early retirement 2 1/2 years ago, on SSD. I have 3 areas with the disease and have had 5 surgeries. The areas are Peri-anal, Groin and Umbilicus. People who have this condition will recognize these words. Pain, Shame, Smell, Comando, Pus, Blood, Bandages, Pressure, Abcess, Boils, Sores, Doctors and more Doctors, Soaking , Sitz baths and on an on. But there may just be some hope. Last month I started in a research program at UNC Chapel Hill Raleigh N. C. and I receive Humira injections , the medication is from Abbott Laboratories. It is a double blind study so I don't know if i'm getting the medication or not. But, I believe it is starting to work as my daily pain is lessening. The study will go on for 36 weeks, and results should be out in early 2013. So you folks should keep your spirits up and search the WEB. I found all my info that way. And I must thank my Wife for putting up with me ( its hard to live normally while your in this kind of pain ) and helping me everyday with bandaging. Good Luck

[callmecatsy]

I am 21 years old and have been dealing with hs for the past 12 years. My mom is really the only one who knows the extent of my mental and physical problems because of HS. I am a tad overweight now [about 200 lbs] and we decided that on January 1st we will both go on Gluten Free diets to try and help. I cannot even count how many medications and treatments I have done and they have all failed. This is honestly my last hope. Any tips? Has anyone else tried it?

[Neecka]

This is what works for me:

1.) hibiclens-shower at least twice a day using this in the area each time

2.) no deodorant-the good thing about hibiclens is that it eliminates the need for deodorant

3.) vitamin c capsule- take one everyday to help your immune system fight this thing

4.) turmeric capsule- the disease is the inflammation of your sweat glands and turmeric is anti inflammatory

5.) hydrogen peroxide- only when you have an open wound...really lay it on there

6.) veet sensitive formula- its a hair removal cream that comes with a blade. You may have to leave it on for longer than reccomended but you will be fine..I've accidentally gotten this stuff on the lumps and there was still no burning. Make sure to clean the blade with alcohol after every use.

7.) medicated cornstarch powder- because it simply absorbs sweat instead of stopping you from sweating all together *i find that we sufferers cant sweat too much because there will be a flare up and can't stop our selves from sweating completely or there will also be a flare up*


GOOD LUCK...STOP USING ANTIBIOTICS...AND STOP GIVING THE SURGEONS A FEILD DAY

[hammerwell08]

Hi everyone! I am also one of the unlucky one's to suffer with this terible disease.I am a 37yr old male, & have suffered for the last 10yrs + . Like most others on here I have had many ops and tried most of the pills available , all with no success!*The first op left me with a banding under my left arm pit, which gave me very restricted movement's in it , that took 4 yrs to heal and close up, even a small pin hole sinus would leak and smell for months. I went in to have plastic surgery to remove the banding , but that has left me with terrible scarring and what they call a frozen shoulder & restricted movement, (my arm can't go above shoulder height/above my head).My right arm still keeps getting infected ,with big cysts comin up for months at a time, (still up now from last july-August ).I have been told by the dermatologists, that there is nothing more they can do for me as I have tried most the pills & almost had all the side effects that go with them. Some I went on stopped the oils in my skin , but dried me up and my skin was like wet paper, I used to sit and pick my lips off and even peel the skin from just below them. Others would give me bad bowels and bladder, if I eat anything it would go straight through me within half an hour. When I'm infected I struggle to do anything that involves physical movement's, I also suffer from depression due to a number of things and have found out "stressing" makes the condition worse. Trouble is I'm a natural stress head if you like.*In 2006I had a swollen left testicle , I just assumed it was a cyst due to my hs and through thinking that and being embarrassed about it, I left it for 2 yrs. By then it had got so big ( size of a golf ball) and uncomfortable that I went to docs and was diagnosed with testicular Cancer.I have since had it removed and had chemo. I'm now on my last year before they give me the all clear.Now you would of thought havin chemotherapy would of helped clear thi6s disease up, it didn't not even to this day, I can't beat it. Since the surgery the scarring keeps getting infected , seems any cut turns to an infection eventually.
Like many others, I don't socialize and suffer the depression and anxiety, I hate getting close to peole due to the horrible smell it gives off, very paranoid about it as they say" a fox cant smell his own smell"! well I can smell it so can others.*I have always worked and all my jobs have been physical, I'm still employed and they have been paying me sick pay for the last 7 yrs, its a company insurance. I was on incapacity untill they changed it over. Every time I go to there medicals they say there is nothing wrong (yes even while I had the cancer & couldn't get on their couch) they still tried saying I was fit for work. Now 2 weeks before xmas they stop my money and say its because ive had it for a year and the last medical said "I was fit for work" again even though my right arm was badly infected and my left arm got restrictions.So once again I have to go through the appeal process, facing someone who ain't got a clue about my condition or knows what the pain feels like.*I have never claimed anything before this so don't know how the system works, all I done was be honest on how I was on that day, not at my worst. I was thinking if they are a doctor, they must know about this sort of thing. How wrong was I, I got the report and he done nothing but lie and award me no points.*I have just filled in a DLA form and sent it off, not expecting anything from them.*I really feel let down by the whole Government & medical side of it all and really feel that we just gotta sit down and suffer in silence.Sorry if I have gone on to long or non of this makes sense, I just neeed to share it with others that do know how I feel ,also that I'm not lying, it really is painfull, and has a big impact on your life in ways others can't see.