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    Old 12-27-2003, 03:55 AM   #1
    lizziemac26
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    Angry Hidrenitis Suppurtiva

    Hi, Im new here.

    I have been suffering from HS for 2 years (undiagnosed) but i KNOW this is the condition ive got, and its getting worse. It started with one 'boil-like' leision now and then, but now i have multiple leisions, every couple of months, and i have also found stress as a trigger. At the moment i have maybe 8 or more (its hard to count, as they have combined into one huge lump) under my right armpit. They are so painful i havent been able to sleep for 4 nights. Its christmas, and the doctors surgery is closed...i know i should be on anitbiotics by now, as it does help to heal it quicker. Im taking 2 paracetemols and 2 nurofens every 4 hours to cope with the pain, but it hardly touches it. Childbirth has nothing on this pain!! I really need gas 'n air right now.

    I was wondering if anyone else out there has had this condition, and if theres anyone with help on pain relief..im in tears here at the moment.

    Thanks, and help would be appreciated.

    Liz.

     
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    Old 01-23-2005, 11:23 PM   #2
    spicket317
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    Re: Boils or Hidrenitis Suppurtiva

    Liz,
    Im a 37 yr old woman who has this i started out with a few here and there when i was about 20 this has progressed so rapidily. i have had surgery to lance these only to have them back in a few weeks, my understanding is there is no cure only antibiotics to keep them from getting so big but that hasnt helped me, i have them in several places now i do seem to think that tanning seems to help i bought a tanning bed and i tanned 4 times a week last yr and i had less new boils but mine seem to never go down completley. if you have any remedies pls let me know im willing to try anything at this point. but i do say the tanning works somewhat i havent tanned in since last yr and i have major boils but i have to decide on boils or skin cancer lovely choices dont u think, i only wonder why we was the unlucky ones to get this dreadful stuff. take care and i wish u well

     
    Old 02-11-2005, 09:43 PM   #3
    Sara4293
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    Re: Boils or Hidrenitis Suppurtiva

    Hi, Liz

    I'm very sorry to hear about your situation and of course the first thing I would recommend is to get it diagnosed so you know your options. My mother never had HS, but she is a diabetic, which makes her very prone to boils if her blood sugar is too high or if she's stressed. I don't have HS either, but I've had several boils before , so I know how painful they can be. The best thing I find for relief is to apply a hot water compress. You can boil some water with Boric Acid (over the counter) and dip some clothes into it or just put hot water into a plastic bag. The heat helps draw out the infection, and you know when it's out it doesn't hurt anymore.

     
    Old 03-16-2005, 08:06 AM   #4
    goldenwings
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    Re: Boils or Hidrenitis Suppurtiva

    Hello,

    I have only just come across this topic. I have posted elsewhere on the boards regarding the problem, and outlining exactly what it is. (Not in a medical way, but in a way of a person having it). If you are still having the problems, then I hope I can give you a bit of insight into my own treatment.

    I had these large awfully painful lumps for 10 years before I was finally taken seriously about how much they had caused problems in my life. I must say mine were not under my arms but -- ahem --in a private part of my body I was finally referred to a wonderful dermatologist who listened and looked. First time in 10 years that somebody had looked properly and taken me seriously.

    He diagnosed this problem at once. Thank goodness, confirmation of the fact that something was definitely not right. I had up until then been given oral antibiotics because the general concensus was that it was "a bit of imflammation, or caused by tiny hairs". I was obsessed with thinking that I wan unclean, as you would be. I began to imagine that they thouight I was in fact imagining the pain these lumps caused me. All they could do was dismiss me. Urrgghh, it made me so mad.

    Because I have lupus, amongst other things, they always try to put things down to that, inflammation in the body. It was absolutely nothing at all to do with lupus. So don't worry ladies. Anyway, I am going off the subject sorry. I live in the UK. I don't know where you live but if not here I don't think the names of the preparations will be the same. The treatment will be though. You must ask your doctor about it. I now use a antibacterial wash on the area. It is the same type that I washed in before and after my heart surgery, so I know it is highly recommended for its cleansing properties. After gently drying I then use a topical rollerball antibiotic preparation.

    Of course with this treatment you have no pills to take and no problem of stomach issues. I took antibiotics for such a long time, they did nothing for the problem so in the end I just gave up taking them. I still get a bit of trouble with lumps, but they are so, so tiny now and nothing like the huge abcessy things I used to get.

    Please tell your doctor about what I have suggested. You need to be free of this horrid thing. Best of luck.

    goldenwings

    Last edited by goldenwings; 03-16-2005 at 08:12 AM.

     
    Old 05-18-2005, 02:43 AM   #5
    triple
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    Re: Boils or Hidrenitis Suppurtiva

    i am 19 years old, i have had these since i was 16 when i got my first... i get them on my butt cheeks....
    atm i have like 9 scars and 3 infected ones that im gonna be getting drained properly by the doctor in a couple of days...

    does these boils stay around for years n years... i ve had em for 3 years already i thought they would one day just stop forming...

    i cant believe this.... not only do i suffer from boils i also have PPP and sebacous glands so under my pants i m not the most appealing

    another question i have does the scars ever go away or they there for life?

     
    Old 05-31-2005, 07:15 PM   #6
    burningpain
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    Re: Boils or Hidrenitis Suppurtiva

    Hi Everyone,
    I have had these boils for at least 20 yrs. It is terrible. As a matter of fact I have a huge one two or more under my right arm now. I have had them lanced which is a horrible experince, I have taken antibiotics, I have applied perioxide, I have soaked in warm epsom salts baths, but one thing that helped the pain is an ointment from the drug store called boilease. It really does help with the pain but that is all. It does cost about 5 dollars for a little tube, but if you have the money, it is worth it.

     
    Old 06-02-2005, 07:56 PM   #7
    jbblbrewer
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    Question Re: Boils or Hidrenitis Suppurtiva

    Hi, I am 30 yrs old and fro about the past 3yrs I have been getting what I think is a boil or cyst on my bikini line and it seems to flare up when I am stressed and happen to shave. It is uncomfortable to where underware. I not exactly sure what it is. The doctor said it infected hairs. I am not so sure. It feels like a bunch of little pockets. Everyonce and a while I get one on my back bone above my bottom. That one we can say is extremely painful. Here's the strange thing the first time I got one I had just meet my boyfriend, now we have a 19mnth old together. He gets them too. One on his underware line (opposite side) after he shaves (yes he shaves down there) anyway, he also gets one in an extremely uncomfortable hole for out going traffic. I think that is strange that we both get them. What could it be and do you think they are contagous? It just think its a really big coincidence. I mean he did get them before me. I did get the one on my back before him but right before periods everonce and a while and they were not that bad. The doctors just act like its normal and tell you to do hot compresses. It affects our sex life which is pretty helthy until we get on of those, it just makes us feel completely unsexy, and makes us think we are contagous. I am pretty sure its not but not positive, guess I just need to hear someone elses story.

     
    Old 07-01-2005, 02:29 PM   #8
    tishiat
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    Re: Boils or Hidrenitis Suppurtiva

    Hi, believe me you are not alone, and the more and more I ask questions about this disease, the more and more I realize there are more people out there like us. I was diagnosed with this in 1998 at the age of 21. I remember getting my first bump on the inside of my leg when I was 18, and they continued on from that point, but gradually and then finally they became uncontrollable. I have been on antibiotics for the last 10 years almost off and on and can tell you anything about hair follicle, and sweat glands being blocked all the way to the possiblity of a zinc defiecency to it being heriditary. My mother gets a few boils here and there, and a cousin of mine, but nothing like mine. I have had several lanced on my leg and right now for the last 3 years, I have had a re-occuring one in the crack of my butt. As I write this I can't sit on my butt. I am in so much pain, my doctor just can't explain what is going on and honestly I don't think she gives me that much attention to find out. She writes me a presctription and thats it. I have also been to like 10 dermatologists..and the same thing. The way I figure it, there has got to be a way to control these or figure out the root cause of them. The biggest scare to me was when they told me I would have to deal with this the rest of my life. I thought oh my God no!! I cried the first time I looked it up and read some girls story of feeling like Job in the bible, I compare myself to him a lot. Sometimes I think God has cursed me for something I did, or he is trying to tell me something, what I don't know. I became pregnant in 2002, and I feared my child would be born with this also or that I would pass it along to him, so far so good and she (dr.) said I couldn't. She also told me that pregnancy normally cures it. Well..when I became pregnant I got my very first one under my arm, I had been praying that would never happen, she had to lance it in the office. Also I have had problems with my butt for 3 years, and it jumps from one side to the next, sometimes I can't even wipe my butt. I cry, so much, I decided a few years ago, they will not keep me down, and I always wondered why I would have a feeling of such helplessness when they came up and then later I read depression is something that happens when you have an outbreak. I refuse to let them hold me down, I work full-time and go to nursing school, and I have a two year old. I can't. A few years ago when I made this proclomation (since i dont have time to run to the dr. everytime), I have started doing them myself. I remember the first time I was brave enough, I took like two Motrin 800mgs., burned a needle and bit down on a towel and stuck myself, it had the worse smell in the world, but it was the size of my hand...and it seemed like it drained for the longest time. when I finished draining that one i had to bend over and drain the one in my butt and the other one on my leg..I have had aleast 9 on me at one time. I just dont know what to do, its embarrasing, i have always been comfortable with my body and now i have a huge complex, i didnt want anyone in my the room with me when I had my baby, but my friends said that I wouldnt care and I didn't..i actually was comfortable enough to have family and friends see my gift to the world. They leave the most horrific scars when they go away. I say I may write a book about this disease. There are so many people out there suffering from this silently. I try to control my stress, thats a factor I noticed. I just wished it could be under control some way, I would rather have one maybe every 6 months instead of 8 or 9 every month. I thought they came up around my cycle time, but that's not it. I want to find a doctor that care enough to give me the attention and run the test that I need, with me being a single mother, I can't let these hold me down, I can't afford to call in everytime I get one, so I just tough it up, dope up and move one, but alot of times I wonder how long will I be able to do that. I still shave sometimes, but I was informed by every doctor, NOT TO DO THAT, USE SCISSORS, I know its hard ladies, and oh yeah when I get one, I won't be wearing underwear at all until its gone, sometimes if its on the muscle I can't even walk. And YES IT IS CONTAGIOUS, never ever use the same towel or wipe your childs face or anything with your towel, always use bleach when washing them. Always use antibacterial soap, there is a soap your doctor can give you call Phisoderm, but anything the pus touches it will cause it to spread to that area. I sit and read these stories and I think alot about myself being 19 with a perfect Playboy body and going fro wearing bikinis to not even being able to wear short shorts, and the fact that my boyfriends wants to have sex or oral sex and I am too embarrased because I got a bump on the side of my leg that looks like a nipple sticking out the side of it. He would just look and say wow babe that looks like it really hurts... I just don't know. I also strarted praying really hard and rubbing my hand over them, that has seemed to help, mind over matter. I hate that we have to go through this, and I tell people they will never understand until they have had one, and just imagine more than one. Just pray for each other and hope someone will come up with a cure/cause of this disease. I was in denial for a long time, but I guess now after 10 years I can say that I have HS. If you get one, always rest the area, no strenous activity, no bumping it or anything., whether I get them in my butt or inside thigh I never wear underwear when they come up, heat pads and epsom salt gives some relief, I found a Tea Tree Herbal oil in Walmart a cousin told me about that drys them out fast, and it works also, also boilease Pain Ointment found at walmart works. Just pray, but do not become victim to them. **** I know some words are spelled incorrectly, thought they had a spell check, but oh well, I think everyone gets it.. thanks for reading and I hope this helps someone out there..you are not alone..

     
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