Help me please...

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I know depression is a side effect of the disease, but I don't know what to do anymore. I don't want to do anything anymore. I need an answer but nobody seems to be able to give me one. I'm 18, surrounded by people who's body image issues are how flat their hair is or how big their boobs are. I've been on SO many different treatment types I feel like a lab rat, but nothing has worked yet. Has anyone got any treatments that have worked for them? I just need something.. I don't want to do this anymore. 

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  • Posted

    Hi daisy I've had his for 8 years now I started to relize that everything the doctors told me to do made it alot worse for.years I have massive lumps in my right armpit and groin, they told me to not sweat alot and to wash my armpits 5 to 6 times or more a day, they said not to shave, and to keep any open lumps covered and anything would set a lump off a certain deodorant, if I was to stressed.

    I had had these lumps for 5 years before I was diagnosed before they told me I had hs I was diagnosed with pcos. There's always people saying what u shouldn't do but to be honest I think it doesn't matter at least for me It didn't, so after years of feeling not normal I decided I was not gonna let pcos or hs stop me being happy happy.

    So I started to not do anything my doctor advise advised me now I'm not saying you should do the same I'm just telling you what worked for me, so I stopped spending time fussing over the lumps I have a bath once a day after work I make sure I do something to get me to sweat alot.of times I couldn't because some lumps were to big.and.painful for me to move, 1 thing that is a must is not to shave I know it's embarrassing but after a while I thought it's not because I don't want to shave it's because I'd rather have a bit of hair then suffer from painful lumps, also deodorant I have found one that works for me without causing any lumps. So make sure you look at everything your using because these can be making it alot worse. Also alot of people pop them which is bad you should always let it pop itself whenever I popped them it spread and came.back worse. Right now I still suffer with hs but they are not big and as painful as they were now there like small pimples that are there for about 2 days but they don't cause me any discomfort.

    So for me doing the opisite worked for me there's only two things I do that I was advised to do is to not shave and always check the area is clean. But look at what your using on you body because they do contribute to the hs lumps staring up.

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  • Posted

    Hi, im also 18 and can sympathise with how you feel. Its really a long game of trial and error to find out what will work. I've found that regular exercise and eating well helps aswel as topical clindamycin and hibi scrub. These measures don't cure the disease and im not saying they will inevitably help. I've been through numerous treatments and still have the worst HS ive ever had. A big help for me is surrounding yourself with good friends and family. Thinking positively no matter what allows for productivity and progress. If you haven't tried a complete diet and lifestyle change i would recommed that strongly. Additionally, i'd suggest analysing your whole body and previous conditions you my have had. Ive always had allergy problems which led me to think that i could have food sensitivites etc. Atm I'm avoiding salicyalates to try and rule out that cause.

    Good luck 

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    • Posted

      Could you give me any pointers on lifestyle/diet changes which are good to make? I do use the hibiscrub and things regularly at the moment which don't seem to be making much difference yet.. Thank you, I appreciate your support/time/message x
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    • Posted

      The most successful diet changes according to the internet and books such as the Hidden Plague, recommend eliminating processed foods such as, gluten, dairy, nightshades, eggs, alcohol and tabacco. Regular excerise also plays a big factor. I would recommend eliminating the specific foods for at least 2 months but it is likely you will see a change within a few weeks. Its a complicated and difficult diet and inevitably you will have to rely on trial and error. A food diary is essential to obvserve reactions to specifc foods. For example, I know for a fact that Pizza and/or beer makes me break out within 24 hours. if you choose to go down this route you need to be extremely scientific in your approach. However, you may find your 'triggers' are simple foods you can easily refrain from eating. let me know in the future if you do have any success. 

       

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    • Posted

      Hi good advice but no one should ever cut out a whole food group such as dairy for longer than a couple of weeks because this can have serious health implications.  The best advice would be too cut it out for say a week then gradually reintroduce foods keeping a note of any worsening of the illness.  x
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    • Posted

      As long as you supplement your diet with other food choices to supply the necessary vitamins and minerals, it's totally fine. I've had a couple of nutritionists tell me that they always recommend an elimination diet for patients with autoimmune disorders, no less than two months, and they give their patients a list of foods to eat to make sure they're still receiving proper nutrition.

      I certainly wouldn't recommend it as a long-term lifestyle choice, unless you're sensitive to all of those food groups, but for a couple of months, especially if it improves your health in the long run, it's fine.

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  • Posted

    Daisy, I'm 49, also had them most of my life.  I realise now that my first flair was when I was 19, then it went into remission for several years, until I was 31.  It has a raltionship with hormones so ironically your body has prepared you to get pregnant but unfortunately we have some problem with our epocrine glands.  It's not in the sweat gland.  The problem is much deeper is the skin which is why they are sooo painful.  The epocrine gland produces pheromones.  So it's nothing to do with being clean and antibiotics don't work because the the fluid is generally not infected.  So relax, many people have long periods without it too!  You just gotta get through this stage.  Also, the chemists are working to find out what is going on, they may well suss it out and find a way to help our epocrine glands work properly ;-)
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  • Posted

    Hi Daisy,

    My heart totally goes out to you. I've had HS since I was 14, and completely understand the whole body image issue. I was in full blown stage 3 of the disease before I managed to put this sucker into remission through a huge diet change.

    HS is extremely isolating. The thing you need to remember is that HS is something you have, not something you are. And even, though there's no cure, it is possible to put your HS into remission.

    Stress can exacerbate your symptoms as well, so make sure you have a few really good outlets. I personally do yoga and I swim, a lot. Don't be afraid to tell your family and friends that you trust. You'd probably be surprised at how understanding and compassionate they can be. Having a good support system is key to beating this depression back into the ground where it belongs.

    Consider an elimination diet, like the autoimmune protocol, to determine if you have a food trigger. Mine was nightshades. Once I cut those out, I went into remission. I will still breakout if I get into something with some hidden nightshade ingredient, or if I get really stressed out, but I went from talking about having all my sweat glands in my armpits and groin removed, to clean, flat skin with some residual scarring. Haven't had that since before I hit puberty. *Cue angel chorus*

    Pretty ridiculous that it all came down to food, considering I've had three wide excisions, laser treatments, dozens of rounds of antibiotics, bleach baths, a mild psychotic break after taking accutane and probably about a hundred or so boils drained (so I completely understand feeling like a lab rat). If I hadn't been so darned happy about finding out what was causing my breakouts, I probably would've been really ticked off.

    There's always hope, don't give up and don't be a lab rat. Don't be afraid to take charge of your health. If you don't like your doctor, or aren't happy with the level of care they're giving you, tell them, and if they won't work with you, ditch them and find a new one. It's your body, and ultimately you're the one who has to live with the health decisions you make, not your doctor.

    Good luck!

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  • Posted

    Ok here goes, here are the 3 solutions:

    1: Wide excision surgery removing the infected sweat glands once and for all and then close the wound using skin flap closures (local, distant, free flap).

    I asked private dermatologists who specialize in HS and they said this alone had a 90% cure rate and it's permanent!

    2: Get an allergy test 1st if you're allergic to any of the foods, eliminate them from your diet. (If you aren't allergic to anything then this may not be the problem)

    3: Laser hair removal where the hidradenitis occurs

    Trust me combine these 3 things and you can forever say goodbye to hidradenitis, I have found 2 surgeons who specialize in hidradenitis so far but they are private, one is in USA and one in UK. I have asked them questions and they said 90% of the people who went for the wide excision surgery with skin flap were cured and hidradenitis never recurred again!

    Hope this helps

    Cheers

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