hidradenitis suppurativa

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  • hi im 24 years old.. i suffer from HS and have done for 5 yrs... i have been taken into hospital for drainages 4 times and i have had them all over my bory even on my face... i feel i cant have a social life i cant work i split from my relationship and everyday i wake in pain and wont get out of bed 4 up to 2 days... i have tried endless antibiotics and am currently taking isotretinoin tablets prescribed by a dermotologist who says there is nothing else that can be done....
    i also suffer from pcos which is causing me extra pain in my kidney area leaving me in terrible pain somedays...

    my mom is telling me i should claim for dla but has anybody actually been sucessful recently as i dont think i could cope with making it a fight and causing even more stress!!
  • merlin68merlin68 Forumite
    2.4K Posts
    I pop mine myself, did so last night in fact. It was under my arm and was rubbing. I've given up on antibiotics as they don't work. My whole body is covered in holes. I have a large hole on my stomach, this was drained by the hospital so had to be packed every day by district nurses. I've also got countless scars on my breast, groin, armpits and stomach.
  • Hi, have just come accross this thread.

    I am 40 years old and have had HS for 32 years, i have had multiple operations to have my armpits removed, and also part of my left arm. I am currently waiting for an op to remove part of my groin and penis, and both buttocks - all because of HS. I was one of the original trial subjects for the original format of roaccutane back in the 1980's. And for me it worked four years of relief - then it came back. Roaccutane again - fours relief again - then back again. But this time the original roaccutane medication had been banned world wide - and its replacement iostretanion took its place. Unfortunatly for me it did not work, and have tried it several times - but to no avail. I ahd an operation last june to remove my left arm pit and part of my left arm, and have been left with limited movement in that area since. My HS flared up back in September to a stage where i have had to give up work all together. The HS is now covering my chest, back, arms, armpit areas, buttocks, groind, penis, inner thighs and back passage.

    I aaplied for ESA back in june last year and was awarded it - but was placed in the WRAG - and i also applied for DLA in February this year and was awarded full mobility and low care rate. I struggle to walk at all, i now suffer from constant non crontrol of my bowels, i can no longer wash and clean my self because of the pain i am in. I am currently on pain relief patches (morphene based) and oramorph solution, but these only take the edge off my pain for a short period. I was assessed under the DWP ATOS farce - who said there was nothing wrong with me and i should return to work. After appeal this was changed.

    Can anyone suggest if i should contact DWP and DLA about my condition getting worse - or am i opening a can of worms if i do.

    Heres hoping to all HS sufferers that a cure will be found soon.
  • Hi everyone! I am also one of the unlucky one's to suffer with this terible disease.
    I am a 37yr old male, & have suffered for the last 10yrs + . Like most others on here I have had many ops and tried most of the pills available , all with no success!
    The first op left me with a banding under my left arm pit, which gave me very restricted movement's in it , that took 4 yrs to heal and close up, even a small pin hole sinus would leak and smell for months. I went in to have plastic surgery to remove the banding , but that has left me with terrible scarring and what they call a frozen shoulder & restricted movement, (my arm can't go above shoulder height/above my head).
    My right arm still keeps getting infected ,with big cysts comin up for months at a time, (still up now from last july-August ).
    I have been told by the dermatologists, that there is nothing more they can do for me as I have tried most the pills & almost had all the side effects that go with them. Some I went on stopped the oils in my skin , but dried me up and my skin was like wet paper, I used to sit and pick my lips off and even peel the skin from just below them. Others would give me bad bowels and bladder, if I eat anything it would go straight through me within half an hour. When I'm infected I struggle to do anything that involves physical movement's, I also suffer from depression due to a number of things and have found out "stressing" makes the condition worse. Trouble is I'm a natural stress head if you like.
    In 2006I had a swollen left testicle , I just assumed it was a cyst due to my hs and through thinking that and being embarrassed about it, I left it for 2 yrs. By then it had got so big ( size of a golf ball) and uncomfortable that I went to docs and was diagnosed with testicular Cancer.
    I have since had it removed and had chemo. I'm now on my last year before they give me the all clear.
    Now you would of thought havin chemotherapy would of helped clear thi6s disease up, it didn't not even to this day, I can't beat it.
    Like many others, I don't socialize and suffer the depression and anxiety, I hate getting close to peole due to the horrible smell it gives off, very paranoid about it as they say" a fox cant smell his own smell"! well I can smell it so can others.
    I have always worked and all my jobs have been physical, I'm still employed and they have been paying me sick pay for the last 7 yrs, its a company insurance. I was on incapacity untill they changed it over. Every time I go to there medicals they say there is nothing wrong (yes even while I had the cancer & couldn't get on their couch) they still tried saying I was fit for work. Now 2 weeks before xmas they stop my money and say its because ive had it for a year and the last medical said "I was fit for work" again even though my right arm was badly infected and my left arm got restrictions.
    So once again I have to go through the appeal process, facing someone who ain't got a clue about my condition or knows what the pain feels like.
    I have never claimed anything before this so don't know how the system works, all I done was be honest on how I was on that day, not at my worst. I was thinking if they are a doctor, they must know about this sort of thing. How wrong was I, I got the report and he done nothing but lie and award me no points.
    I have just filled in a DLA form and sent it off, not expecting anything from them.
    I really feel let down by the whole Government & medical side of it all and really feel that we just gotta sit down and suffer in silence.
    Sorry if I have gone on to long or non of this makes sense, I just neeed to share it with others that do know how I feel ,also that I'm not lying, it really is painfull, and has a big impact on your life in ways others can't see.
  • edited 2 March 2014 at 12:47PM
    annie02annie02 Forumite
    10 Posts
    edited 2 March 2014 at 12:47PM
    Hi there, i just wanted to pass on some hopefully helpful info. I just noticed that the water companies offer water sure.
    Its mainly for people with allot of children and on a low income you need to receive something like tax credits too. Or if you suffer with 1 of 7 illness's but as i get hidradenitis suppurativa and shower or bathe at least twice daily (for obvious reasons). I can apply for a cap on my water bills they cant be higher than £230 for water a year and sewerage charge cant be higher than £319 this will halve my water bills. I know its not for everyone but isnt it nice to hear that something good is connected to this horrid illness! I dont think i can add links but i am sure it will be in Martins info page
    You may either get a letter from your Dr or the surgery stamp on the form (so i was told by my water company) so make your Doctor aware that you are claiming water sure, so the discount / cap isnt held up do hope this helps even one person
    Best wishes and its hell isnt it x
  • annie02annie02 Forumite
    10 Posts
    Oh i have had 4 operations where i was under a general. (lucky old general Joke!!!)
    Then i had another by a bast*** who decided to do the op without even local pain relief i cried it was so bad and having it packed was also painful.Every op i have had has ended with my stiches bursting due to an infection.
    I have had this for 25 at least that's all my adult life and i was a nurse then trained to be a beauty therapist (they are assumed to be perfect and to hear people come in complaining that they have noticed a facial line drove me mad!!
    Though i also suffer with another chronic illness which means i cannot work though my husband does, yes you can have relationships with hidradenitis suppurativa. He is lovely and very supportive all my family are. good luck to you all
  • bll78bll78 Forumite
    213 Posts
    Hi I do not have this terrible condition but wanted to offer some advice on the question about DLA.
    cleomolly wrote: »
    I to suffer with this and have done for over 10 years. I do not have it anywhere a part from my groin area and dred getting it under the arms! I'm currently thinking of a DLA claim but having done some research on the net, it doesn't look like i will be succesful in getting it. anyone else have experience of claiming with this condition?
    Firstly as a new claimant you'll probably be going after PIP not DLA unless you're in NI (the replacement benefit). Whether or not go get an award is based upon the effect on r day to day life, not the condition, so for example I have a still undiagnosed neurological condition but have got an award, I know others with MS who haven't. If the condition is effecting your day to day live in the way PIP applies then apply (link below), don't consider whether people with this condition do or don't get an award, it's not really relevant.
    http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system
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