20 year old female and feel so alone with this

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Hello, I am a 20 year old girl and i've recently been diagnosed with HS. I've had the problems relating to it for around 2 years now and was even initially diagnosed with acne. I'm learning just how ignorant doctors are to this absolutely dreadful experience and I feel like I can't talk to anyone. My mummy is absolutely brilliant but I'm too embarrased to be completely open about what I'm going through and I feel so lonely and isolated. I got my first perianal abscess a month ago, it was massive- 19cm in size and i was admitted to hospital to have it drained. I have HS in and around my groin and all over and in between my buttocks and i could not be any more depressed and embarrased over it. I'm currently on bedrest and I'm a student at university (which i'm now behind in) and have a job and i can't drive or leave the house without fear of getting and infection or making anything worse, i can tell the wound is going to take so long to heal. I am a very active person and I live to go to the gym and this has just rendered me immobile and I'm finding it extremely difficult to cope as I have such issues over me weight as it is and pyschologically, doing nothing all day every day is taking its toll on my mental state of mind. Yesterday, I attempted light exercise for the first time and now today I have a hot, sore red lump in my groin which might be another abscess! sad is this what its always going to be like? I'm a young girl and the humiliation is taking its toll on my life

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12 Replies

  • Posted

    Hello Megan

    I had my first one whilst I was at uni 10 years ago, I had alot going on at

    that moment in time. For me stress is a hugh part of this horrendous

    condition.

    We all need to remember that were not super women...

    my recommendation to you would be to try and cut down on the amount of stuff your doing.. relax more destress etc..... most importantly tell your mum hunny.

    University is stressful in its own right, hopefully you have found a good

    dermatologist. .. it can be bought down in serverity. Just remember that what works for one person may not work for you.

    Xx

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    • Posted

      hi lindsey, thank you for replying. My mummy is absolutely brilliant i wouldnt be able to cope without her. But, i wanted to join a forum for people like me because i just want to talk to people who understand exactly what im going through.

      one of the doctors i went to see about it called it 'sweaty bum disease'. It was so hurtful and offensive. 

      I have a hospital appointment on the 10th march and i will definitely be enquiring about a dermatologist.

      x

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  • Posted

    It took me years to get a diagnosis, unfortunately ive also been

    diagnosed with other issues.

    Glad you have an appointment soon

    let me know how you get on hun xx

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  • Posted

    Hey Megan 

         I myself have been dealing with HS for 20 years only being 36 now it has been over half my life. Lindsey is right on what works for some doesnt work for others so just try not to get down when something will work at first and then stop. I know i have felt like is this gonna run my life and in a way yes but you learn to adapt and you wont always feel this bad. a big thing for me was my diet and yes stress ... the more i stick to what foods dont cause as many outbreaks and the less stress i have in my life the better i do. I got very down for a while when my doctors just seemed to run out of solutions and i even had a doctor that their main specialty was HS so i get the feeling of helplessnes. and talk to your mom I myself do turn to others with it cuz it does make me feel better but sometimes there is noting like venting to mom to feel better and mine has actually gotten on board and helped me with researching on my own non madicinal ways to try to make this miserable thing called HS better for me. I know it is such a embarasing thing but get a support group around you of people you love .... in my case it has made this whole nightmare a bit better .. keep your head up. 

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    • Posted

      In my case Im not sure what foods would cause outbreaks as I am conscious of my weight and have been on a healthy diet since last summer but I cant say ive noticed much of a difference to my HS. Do u think eliminating a certain food group such as dairy, gluten, and nightshades would help? 

      I'm really seeing that home remedies seem to work the best for people because the doctors are so useless so i ordered some turmeric capsules, zinc gluconate, burdock root and fish oils!! not sure which are myths and which arent but im desperate to try anything!

       

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    • Posted

      That is what i am doing now is eliminating foods. I started with the paleo diet and also cut out nightshades. I have only been doing this for a month I also have fibromyalgia so with both of these health issues i figured it wouldnt hurt to try and so far i have seen a difference. from what i have read most say give it 2 months then start adding foods back to see what gives you problems. I also asked my doctor to order a food allergy test which i am having next week. So maybe that will give me some more info on what to stay away from. Me personally i hate taking tons of medications and though i know i will need antibiotics from time to time i got sick of feeling ill everytime i took them ( a lovely side effect i get from them ) i myself take zinc everyday and yes i have seen the others recomended as well. i would say just try them if it works great if not move on to the next thing. It is crazy how one thing works for one person and not for another so just keep trying i understand the desperation. I think the doctors just dont know enough about it yet cuz for so long it was just brushed off as not being clean. I actually argued with my doctor about it for the longest time cuz I am a person who showers at least once a day and dont stay in dirty clothes so I wasnt accepting them telling me to clean more. One thing i keep always and not sure if it will work for you but I wash with hibiclens and leave it on the bad areas for 2 minutes before i wash it off. i do this 2 times a day seems to help me but might not be a bad thing to try if the doctors havent already brought it up to you 
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    • Posted

      really appreciate the advice. its such a horrible disease and i cant believe that it isnt more recognised.

      are there any surgery options? i read about people having their sweat glands removed but im not sure how effective that would be.

      i know no remedy is long term but it would be great to get away from the recurring abscesses. my perianal wound at the minute has only healed slightly after 2 very long weeks so i will just have to be patient before im on my feet again!

      do u think its possible to still lead an active lifestyle because i dont know what i would do if i couldnt get to the gym.  

      thanks 

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    • Posted

      I have not opted for surgery since most i know of only had a few months of relief. So you could look into that but it is just something i didnt want to go through since i have it bad in my groin, armpits and under my chest. just seemed like an unnessasary thing to put my body through. but i would look into it if it is somethng you might be interested in trying. As for the gym the problem that i have had is the sweating causes breakouts so it is a tough thing to find a balance with. But sweating usually triggers me. I am not sure if this would help but if you like swimming there is a way to stay active and not be sweating a lot... not saying i have gone that route but is a suggestion. And i know waiting to heal sucks but take your time and let it heal. I have rushed it before and i usually end up paying in the end... and of course i never mind sharing what i have gone through or found out about HS esp. if it helps someone out 
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  • Posted

    I have had HS for 10 years and was in stage 4. Tried EVERYTHING and been to many doctors and spent lots of money. Antibiotics, creams, steroids, experiments, laser hair removal and surgery. My dermatologist brought me the most relief by slicing the cystic tunnels open and scraping out the cystic material but that was only temporary. I found a blog about nightshades and autoimmune diseases. HS is an autoimmune disease. Your body fights the opening of your sweat glands and attacks them, causing cysts to form. My dermatologist has studied it tremendously and keeps up with the newest research. I cut nightshade vegetables and am now in remission since this summer !! HS may be caused by a food sensitivity for some. It was for me. I have to be VERY strict and watch all ingredients. Nightshades are everywhere! Peanuts also make me flare up but I already knew I had a sensitivity to them before because of other issues I had (ulcers) with peanuts. Google "nightshade vegetables and autoimmune diseases" for more information! Good luck!
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  • Posted

    Hello megan i have hs. I have had it for about a year. I believe i found my own cure because doctors couldn't help. I bought antibacterial ointment. I apply it everyday. It takes away the oder and heals the wounds. But you must put it on every night with out fail even on your groin. I have some on my between my butt cheeks i place the ointment on and i stick a gauze on it and i go to be. It seems to drain over night do to the antibacterial ooinment. I also a exfoliating sponge that scrapes off dead skin it works

    wonders. Its worth a try i hope it works for you like it did for me.

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  • Posted

    hi I understand how depressing and emotionally embarrassing HS can be I have been crying more then normal for the past few weeks. I'm trying gluten. Sugar free no process foods zinc turmeric and no nightshade. And not having much luck next is dairy however its only been a few weeks since starting I haven't been getting help from my doctor so its frustrating. Just keep trying don't give up. I have been lucky as fare as not having to miss work or school but my embarrassing scars and breakouts effect my social life I go to work and come home every day and it gets so lonely. don't hide. I started to reach out and finely told a friend what I have been dealing with she been awesome support. I started getting this at 18 and am 47 still can't get the doctor to agree that it's HS even after being information and having a new abcess last week she said no dermatologist needed she would send to infected disease wtf It not contagious sigh looking for another doctor now. From what I been reading seems most do best with diet and home remedies so I'm not giving up til I find my triggers and I just keep my head up cry a little and move on. I'm glad to hear you at least have someone willing to diagnose it right for you. That's a good start.
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  • Posted

    I sympathize with you regarding the humiliation. My husband has been aware of my condition and has never been anything but supportive. One night I broke down in tears and told him I feel disgusting and like I have no sex appeal whatsoever because of HS. Again he was supportive but I still feel disgusting.
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