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Old 06-10-2010, 07:01 PM
 
2 posts, read 16,485 times
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Gluten free diet is a must. I believe gluten is a huge factor for us. After switching to a gluten free diet my hs flare ups stopped. I also take zinc gluconate tabs and drink a glass of warm water with a tsp of tumeric seasoning twice a day.
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Old 08-07-2010, 10:59 PM
 
1 posts, read 11,433 times
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hi i'm 45yrs old and have been dealing with h.s. for over 25 yrs. i hate to hear that anyone else has to deal with this , i thought i was the only one for years. At my heavest weight i was 375 lbs this year i've lost about 70 lbs so far and have seen a hugh inprovement i my h.s. i would say at least 70% i found out i had diabeties and had to go on a strict diet. I don't know if it was cutting out alot of fried foods or junk foods like potato chips or if it was due to the weight loss itself but it has helped me. I also put proixcide in a spray bottle and spray under my arms and groin area twice a day. it's not gone away, but the boils are not as big and i get very few of them now, before i would have 10 or more at once. i'll pray for each of you every night and hope a cure comes soon
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Old 08-21-2010, 06:34 PM
 
1 posts, read 11,401 times
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Ive been dealing with this since i was 13 years old... It has gotten worse the older and older ive gotten... Im now 22 years old and its just bad. I have been on anti's and NONE have done anything for me. I have a appt with a plastic surgon but im scared because ive read about people having surgery and it coming back. This is just so stressful on my body and my mind... It's really hard to try and be confident and try not to have it consume all my thoughts but its hard. I dont know if surgery is the answer? I REALLY dont want to do it however... im in pain and the scarring that it has left is disgusting... HAS ANYBODY had surgery and if so would you say to do it????
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Old 08-31-2010, 07:58 AM
 
1 posts, read 11,367 times
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Hi everyone...I am 23 year old female that has been suffering from HS for about 5 years...it didnt start until i gained weight and has become so bad over the years...I have it under my armpits and between my breasts and in my inner thighs...I HAVE HAD THE SURGERY under my right arm and it came back in one month and has gotten WORSE...not to mention they had to remove a lot of nerve endings and I still 1 year later have no feeling in my arm and half of my upper back...it was probably one of the worse decisions I ever made. I have tried every anti biotic, home rems, plus...I would like to think that there is hope for all us HS suffers but somehow I just dont think there is...I was wondering how foot powder is safe to put on all these open areas where the inside skin is exposed.. anyway thats my take on surgery, its not worth it!
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Old 08-31-2010, 08:09 AM
 
84 posts, read 226,872 times
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I have HS too and it was really bad in both underarms and groin area. I was able to receive social security disability due to having this disease. I also had lost a lot of weight and had a breast reduction and they cut away alot of my diseased skin and now I don't have them appearing anymore. I still get them in my groin area and they are painful. I was on long term antibotics but quit them.
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Old 11-02-2010, 12:08 PM
 
5 posts, read 48,173 times
Reputation: 15
Default hidradenitis suppurativa surgery

I have bilateral axial hidradenitis suppurativa for 10 yrs myself. I have cut my self off from the world to the point that my social skills with the opposite sex are not so good anymore. Baylor Medicine diagnosed me correctly after years of searching for a good doctor that understands the disease or at least heard of it, and doesn't blame it on being fat. Oh yes I heard it all.

I had surgery on both of my arms this past month and It was the BEST decision I have ever made. There is no guarantee it is a permanent fix, but one thing is certain, it will not be as severe as it was. I can handle that. I had a severe case. My next surgery for the groin area is in January, that one is more tricky because that area will have reoccurences. I am not looking forward to the pain, and it is very painful, but every day gets better and better. I talk about this openly with my friends and some people because people start to wonder why you are 37 yrs old and you are not dating anyone. If they only knew, they would not ask such rude questions. Once I tell them it usually shuts them up. If you have a severe case of this underneath you arms I strongly suggest the surgery. You do have to constantly stretch you arms about a month after surgery to keep scar tissue from limiting movement in your arms. I have no problems no and I am looking forward to buying NEW BRAS. It is the simple things in life that make you happy, and I never thought I would say I can't wait to buy new bras.
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Old 11-02-2010, 12:15 PM
 
5 posts, read 48,173 times
Reputation: 15
Default hidradenitis suppurativa surgery

Quote:
Originally Posted by djgoodys View Post
Gluten free diet is a must. I believe gluten is a huge factor for us. After switching to a gluten free diet my hs flare ups stopped. I also take zinc gluconate tabs and drink a glass of warm water with a tsp of tumeric seasoning twice a day.

How long have you been on this diet? I have never tried Gluten free foods. I am losing some weight, which does help out some. I had surgery on both my arms which was the best decision i have ever made, but I was looking for surgical alternatives.
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Old 11-11-2010, 07:58 PM
 
1 posts, read 11,228 times
Reputation: 10
I too have been dealing with this disease for about 15 yrs now, and haven't found out what was wrong with me until today. I found out about the disease while watching Mystery Diagnosis on Discovery Health. To find out that someone else was having the same problems but much worse inspired me too find out more about it. Everytime I told a doctor about it, they would always look dumbfounded by it and just told me to keep good hygiene, which I know wasn't the case because I'm not a dirty person. I have been getting the lesions under my arms and on my groin mostly, and just recently I has shown up on my inner thigh which was extremely painful when I tried to walk or sleep, and underwear was not helping at all. What I did to relieve the pain was put a band aid over it, which did help tremendously. I haven't had a major flare up for over a year under my arms, but I do have lumps under both of my arms that don't seem to be getting bigger or smaller. I'm happy to know that I finally have an answer to what I have, but am also upset that there is no permanent cure. So I guess I can just count my blessings, and pray that someday there would be a cure
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Old 11-17-2010, 12:03 PM
 
5 posts, read 48,173 times
Reputation: 15
I live in Texas, and I can't wait until Winter, becasue my flare ups are not that bad as they are in the summer. I was even told by a doctor in the medical center to use a blow dryer in the areas that are affect after taking a shower twice a day. He said you want to keep these areas dry. It does help somewhat, but come one I live is Texas where we have very hot summers. It is hard to stay dry all the time. It is good to know that this was on mystery diagnosis and yes knowing someone else that has this dreaded disease makes me feel a lot better in a matter of speaking. I do not feel so alone anymore. Like I mentioned in my previous post, the decision to have surgery on my arms was the best decision I ever made. It is not a permanent fix, however IF it reoccurs I was told it would not be as severe as previous flare ups. Thank you for your comments
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Old 11-26-2010, 10:27 AM
 
2 posts, read 18,347 times
Reputation: 10
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.....
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