Newly Diagnosed :(

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Heyy im Vicki im 23 and have recently been diagnosed this week sad! After a long time going back and forth from the doctors and just getting given diffrent antibiotics and them not caring! I met one doctor who was amazing and spent alot of time talking to me and she was the one who thought it was Hs that i have even tho i have been back and forth for the last 2 years maybe longer with no answers. I even had a cyst removed from my groin back in feb and noone even noticed it then, which now it all points to the Hs. Touch wood! im alright at the moment but there isnt a day that goes by that im not either sore or just feeling unwell and ill in general. I have scaring that i hate which is on my bottom and my armpit. Iv been feeling rather down with it all too, there are times where i just burst into tears but to me noone sees what we goin through and how painful it is. To them Ohh its just a pimple NO!! Im just scared whats to come sad! I have been put on a months trial of antibiotics  Lymecycline. I will just have to see how they go. Thank you for reading! 

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  • Posted

    hello thereI felt the same way , but there are a few ways to keep it undercontrol and try and keep a supply of anti biotics for when it seems to flare up, try not to do too much stenuous exercise, use hibiscrub and put cream on the so called spots and use a dressing this will minimalise the effects. 
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  • Posted

    I suffered for ten years and felt at a loss then recently one got infected and i knew nothing of the condition one in the groin got infected because i had been very busy in the groin area within hours it was painful i didnt even look it had felt so bad arriving at A&E i was sent for surgery the cyst was massive within hours i had an open wound for a month being packed and dressed each day stress hasnt helped and now it has sealed i am aware it could happen again there but it is so simple to avoid it getting so bad the post below has helped me at the moment i have 5 but all healing well

     

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    • Posted

      Thank you very much for the reply! The one i had in my groin was nasty too it came up burst and the repeared every month for ages but since i had it removed iv been fine there! Thank you for the help! Its hard with my job sometimes too tho as im always on the move but my work place have said if i need any help then to let them know so i spose that will help! I hope you heal up very soon! <3
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  • Posted

    Hi Vicki

    I'm glad you've joined this forum so you'll realise that we all know EXACTLY how you feel.

    I've had numerous surgeries and have been on lymecycline for years. I'm sure they did help at first but not after years of taking them and I've recently stopped taking them! My doctor wasn't exactly helpful when I asked if it would be ok, he just said that he didn't think there would be side effects and to see how it goes.

    Touch wood, I'm clear at the moment and trying to chill as stress definitely makes them worse.

    I hope you feel a bit more encouraged that you're not alone and can say exactly how you feel on this forum as we know what you're going through 

    Be kind to yourself, think positive thoughts and know that there are an awful lot of people who are far worse off than us.

    Take care

    Carole x

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    • Posted

      Heyy Carole! 

      Its good too read everyone elses point against it and to find out how other people are coping with it and yea its good to know there are people there who know what im going through too!

      The last doctor i saw was like that he hadnt even heard of HS, he flicked through the leaflet i had and was just like YES but yea i know its HS iv looked it up enough well maybe too much!

      All i keep gettin off people is your a snappy bitch at the mo sad i cant help it. I spoke to my mate the other day and i found her very good to talk to but then i spoke to my partner the other day and was cry and he was like why u crying. I think men are just sh*t with sympathy.

      You take care too! xx

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    • Posted

      Hi vicki

      So much for coming off the lymecycline- I've been off it 2 weeks after taking it for 4 years and I've got 2 huge ones appear on my groin and a mouthful of ulcers (don't know if that's connected!)

      Anyway I'm back on them which pisses me off so just hoping for the best now.

      I think you tend to forget how painful they are and it does make you feel ill so no wonder we're down in the dumps.

      Take care xxx

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  • Posted

    Another thing to ease them is to lie in a warm bath and put a hot flannel on them. It's not as painful once they've burst xx
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  • Posted

    Hi victoria,  I read your message and am almost brought to tears for your suffering and misuderstanding of this horrible condition.  I am 52 years old and 30 years ago I was going through very much what you are going through now,  I saw doctors, got antibiotics, then saw dermatologists who gave me painful cortico-steroid injections into the raw burst abscesses in my groin area.  They would help only for a short time then I was back to walking in agony as every walking movement cut into the raw open wounds in my groin.  I felt so low, so depressed, so hideous, and so isolative.  Even my parents, whom I had told, couldn't possibly understand what something like HS is like to go through.  I was put on Roaccutane drugs which helped only for a while, then when the abscesses and pain became so unbearable that I felt my quality of life was so bad, I saw a doctor at the hospital.  He was so shocked by the state of my disease he suggested surgery.  My dermatologist argued, saying that would be butchery, but nothing he had done had worked.  I opted for surgery - anything was better than living the way I was.

    Victoria - I can't speak as a guarantee for anyone, as we are all different, but surgery worked for me in many ways - I felt I had a new lease on life.  I was  left with scarring, but that was nothiing compared with the horrid, painful, open wounds I had before. 

    Victoria, this is an incurable disease, and that is not a comforting thing to know but there is nothing we can do about it.  I know that probably doesn't help you, as when I was your age, I felt it was almost the end of my world. I thought, why me; how can I ever feel confident with this.  I felt so isolated and alone in my suffering and felt like a freak, as I was told I had a rare disease.

    THIS NEEDS TO CHANGE - THIS DISEASE IS NOT AS RARE AS DOCTORS MADE IT OUT TO BE.

    Anyway, Victoria, I was lucky - surgery cured me of most of the disease - I only had small outbreaks on occasion which faded quickly.  Since then I went into remission for 30 years and could lead a normal life.

    However, early this year, after a period of immense personal stress, the hideous disease came back with a vengeance, this time under my left armpit, leaving me with huge lumps, all bursting and leaving raw agonising wounds.  This went on for about three months - I was contemplating surgery but then they just healed and vanished.  I do not know whether the disease will return again, either in the same place or somewhere else - it's unpredictable. 

    It is  about time this disease was taken seriously and studied further - it is so debilitating and causes so much suffering to those who have it, and only others who have this condition can ever really understand.

    Victoria,  surgery worked  for me, that is all I can say, but we are all different.  Hang in there girl and know you are not alone.  Years ago, at your age, before the internet, I certainly felt I was.

     

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    • Posted

      Heyy smile thank you for your reply! I know alot of people do not understand this at all! How painful it is and how horrible you feel! 

      I know what you mean the scaring i for this is horrible and ugly compared to the surgery ones well i think anyway. Its not as rare as people think because i think so many people are too embarresed to come forward with it. Because they think it must be them and there hygine and its there fault or they are just to stubbon to get help. I have red alot into all this recently scared the life out of myself people keep on telling me to stop googling it and stop reading into it so much. But i want to know what can happen! maybe what i have to come so then maybe i can set myself up for what is to come. Even know we never know when a flare up is gonna come,

      Fingers crossed for you that they stay away for a long time! It does need to be studied more further there is alot of parts to it to be honest. Im glad this is here and i have people to talk to about it all because most people around me dont understand the pain i am goin through sometimes. thank you again smile 

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    • Posted

      Hi Victoria,

      Touch wood I haven't had any more outbreaks since early this year.  Last summer was very hot and humid and it was hell having to go around with bandaids plastered under my left arm when I wore sleeveless tops.  (I live in New Zealand and it gets very hot here in the summer.

      I am so glad you do not feel alone with this disease as I did for so many years, but believe me the surgery worked wonders for me when I had it and made me feel like a normal person again.  The scars in my groin faded considerably and weren't even that noticeable later on.

      And yes, I also think HS is more common that we think and hopefully one day there will be a cure for it.

      I personally think that stress contributes to it as early this year was my only bad outbreak in 30 years after my surgery, and last year was a particularly stressful year for me.  Luckily now, my stress has gone and it seems I have gone into remission again, this time hopefully for the rest of my life lol.

      Take care and all the very best to you.

       

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