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    • strong96
    • By strong96 20th Jan 09, 7:39 AM
    • 126Posts
    • 16Thanks
    hidradenitis suppurativa
    • #1
    • 20th Jan 09, 7:39 AM
    hidradenitis suppurativa 20th Jan 09 at 7:39 AM
    anyone else suffer from an acute form of this, i do and its excruciating, it actually stops you using the arm thats affected, the antibiotics are crap but you take them just to reduce it reacurring quicker, there is no cure i've already had my tracts removed under my left arm and skin grafts but it doesnt do that much to relieve the problem.
    Anyone else?
Page 2
    • fairycake
    • By fairycake 26th Dec 09, 4:13 PM
    • 68 Posts
    • 10 Thanks
    I really do sympathise with you. HS is a truly disgusting disease and the medical profession dont seem to know alot about it, if anything.
    I have now had it for over 25 yrs and nothing works, not pills, potions or surgery. I agree, the problem is that nobody knows just how much pain you are suffering and I also get very depressed as well.
    Wishing you all a pain free new year.
  • kimlunney7
    hi im 23 years old and have had HS for bout 4 years i get them in the armpits, breats, groin, and my bum and when i get a flare up (which is often) i cant even get up to see to my 2 young children my partner claims income-based jobseekers allowance and they keep sending him on courses to find a job and my doctors treat this condition as if they are just acne and tell me to basically stop being a wimp and aslo ignore the anxiety and deppresion i suffer which i have suffered since being a child i have a history of self harming and they just dont care they tell me i cant claim disability and i quote "because there a blind people that manage to go to work" im not having a go at the blind, but i cant walk my partner has to bathe me, take me to the toilet, he has to do basically everything i should be able to do myself but cant and without him i would just waste away and i so scare of what will happen when the job centre makes him get a job how will i look after my kids?
  • ash4becks
    hi im 23 years old and have had HS for bout 4 years i get them in the armpits, breats, groin, and my bum and when i get a flare up (which is often) i cant even get up to see to my 2 young children my partner claims income-based jobseekers allowance and they keep sending him on courses to find a job and my doctors treat this condition as if they are just acne and tell me to basically stop being a wimp and aslo ignore the anxiety and deppresion i suffer which i have suffered since being a child i have a history of self harming and they just dont care they tell me i cant claim disability and i quote "because there a blind people that manage to go to work" im not having a go at the blind, but i cant walk my partner has to bathe me, take me to the toilet, he has to do basically everything i should be able to do myself but cant and without him i would just waste away and i so scare of what will happen when the job centre makes him get a job how will i look after my kids?
    Originally posted by kimlunney7
    try for dla and he might be able to get cares allonce if you get middle rate care or higher then you wouldnt have to worry, and why dont you contact social services you might be able to get a little help with your care needs and give hubby a little time off and they will support you with the kids as its there duty of care , as for you gp get rid i hate bad gp's i used to never see the same doctor way my practice is thou, but i make sure i see a great doctor that doesnt care if she runs late she wants to help and you need that take care and btw get the CAB to fill dla forms in and make sure you write all of your care and moblity needs no matter how little you think they are x
  • 83_Nicole_83
    Wish the suffering would stop
    Hi all,
    Firstly i would like to say how i feel for all you suffering with this terribly painful problem. I am 27 years old and had this for around 6 years. My first few were under the arm, and grew so big that i couldnt lift my arm. Then they would pop and i would be there for hours with this smelly greeny brown gunge flowing out.

    The Docs had been telling me for a few years they were just simply boils, and once they had drained they would go...... then i found out that HS is often associated with Polycystic Ovarian Syndrome, so i made an appointment with a different doctor, and asked "have i got this" he looked at the lumps i had and confirmed that is exactly what is was.
    6 months or so later I was put on some antibiotics, oxy someting, was told i had to take these for no more than 6 months and that i could not under any circumstances concieve..... i was single so had no intention to.

    They stopped under the arm after my mum and sister pulled a 1cm black bit out. This was a huge relief..... BUT then they started in my groin, and get painful an awful lot quicker, and harder to self drain.

    My most recent (popped last night 27-9-10) i had 2. 1 was a little on in my groin area, and the 2nd a large on my buttocks. The little one has been sore for a few days but seems ok now i self drained it.
    however the one on my buttock is still very sore

    Although my HS does not seem as severe as some of you i can totally sympathise with the pan you sufer on the flare-ups.

    I have PCOS, Type 2 diabetes, and i am overweight (due to these problems weigh is harder to shift, and i do try)

    I work part-time, and also work for myself, the biggest fear is one of these will pop when at my part-time job... (Tesco)

    I just wish that there was something that could be done to help identify when they are like to pop.

    I honestly thinking it is time to write to a higher person (not sure who) to get this condition more identified...... and possible cures found, or something to help make the sufferer s lives easier.

    Again i would like to thank this forum, and say i can totally understand what you are all goin through.

  • kazzah60
    Hi Everyone
    I am VERY fortunate and don't suffer with this dreadful condition
    I wanted to give you all a big hug and say - well done for TALKING about it - firstly it makes people like me grateful they don't have it
    I am SURE - you are all feeling a bit less isolated now you know you're not alone in suffering from this condition.
    I wish you all well
  • smiler383
    I too have been suffering from this for many years, I do already claim DLA for other reasons, and have not mentioned this illness when claiming. I have been on longterm antibiotics for a few years, but they do not seem to help. i use hibiscrub to wash the affected areas which eases the soreness a little, you can get this on prescription, I used to spend a fortune on dressings from the chemist until I found a shop on ebay which sells them alot cheaper, I have never tried to get dressings on prescription. I did use manuka honey on dressing at one time which seemed to help but is too expensive to use all the time. I sympathise with all of you who suffer from this, it is so awful and can be depressing, especially when you know one is about to burst and do not go out because you know how bad the smell will be when it does burst.

    Thank you for the link to a website on this I will go and have a look.
    • Finefoot
    • By Finefoot 4th Oct 10, 8:05 PM
    • 632 Posts
    • 790 Thanks
    My sympathy to you all.
    I know someone who has this, and it just ruins his life. The pain, the worry that they are going to pop at an inappropriate time turns him into a wreck of nerves.
    He finds that ingesting wheat makes them flare up.
    Loving the sunny days!
  • Immy169
    Hi all I have stage 2 hs and some days it's excruciating the flare ups are fast and vast normally stress induced I can eat painkillers like sweets but still I find the pain a killer does anyone no if I'm entitled to dla as I've no knowledge on this ? :s
  • Tash Goswami
    HS and disability
    Hi there i am a HS sufferer and have been for well over 20 years. It took nearly 18 years to finally get a diagnosis and since then i have researched every site and document about the disease.

    Antibiotics are pointless unless you have a secondary infection - most GPs dermatologist and medical profesionals have limited or no knowledge of the disease, which makes benefits hard to claim as the people involved in assesing them are often clueless about the disease.

    I am now on ESA and DLA it has taken 2 years of battling to get it. I went to CAB to get advise and help in completing forms - i took a friend to the ESA medical and i armed myself with literature from the web about the disease.

    It is really important to go to your GP EVERY time you have a flare up, no matter what. Tell your GP about how the HS affects you and ask for their help to access help. Help such as care after hospital admissions, home help, counselling, weight management, quit smoking programmes etc.

    I lost my job after a major falre up and was successful in getting some compensation for unfair dismissal - I am not saying that this will be the case for everyone but what it showed me was that I had to be really proactive in telling everyone in the medical, legal and advisory service that HS does regulary cause pain, trauma, depression and makes life very hard.

    Claim for DLA, claim for a blue badge if you have it in your lower regions as walking can cause a flare up due to friction. Get help with care if you need it and keep a diary/record of the impact on your life. Things like: have you cancelled social engagements, been off work, been in A&E, been to hospital, seen the GP etc. Write a letter explaining how the condition affects your daily life and emotions and send it to all the health care professionals who are involved in your treatment - that way they know exactly how it affects you when they get asked by the DLA or ESA or Blue badge scheme.

    Do not accept crap treatment - its their job to know about the disease and if they don't then they have failed you.

    I am sorry for my rant but i feel so angry that we, the people who suffer from this awful disease are told that it is not so bad. We all need to speak up and state our case clearly and firmly, otherwise they will continue to palm us off with inaccurate information and treatment.
  • youtoo?
    Smelly Cat, It's not your fault.
    I'm 32, and I have had this condition since I was 11 years old. When the first ''knot'' appeared, my Grandmother figured that it was just a boil. So, she and my Stepdad laid me on the couch and made me bite a rag while they popped it. It was a terrible start a lifelong ailment. I continued to have ''sores'', and when puberty hit, they became terrible, flaming boils that would rise up and pop. In high school, it was awful and continuous. Most of the time, I could not lower my arms all the way, and nothing I did would stop it. I carried a perpetual foul odor and was teased greatly for it. People always thought that I was nasty and didn't bathe, but no matter how often I washed the area, I could not clean it. And I never felt like I could tell anyone what was going on. Now, it has progressed to being tracts that run together with various openings that seem to always leak pus. It is a great hinderance because I can't just walk up to anyone and give them a hug or stand too close, because no matter what I do, they smell awful. I had a job in a daycare for a short time and finally had to explain to my boss why my small, closed- up room always smelled bad. Thankfully, she was very supportive. But, I always had to spray odoban and keep a window cracked. And anytime a parent came into the room, I would subconsciously (and consciously) back myself into a corner as far away from them as I could. It is a very difficult condition to have and I know of no solutions. I don't have many friends because I am afraid to get to close to people. I know that they smell it.... and it is terribly embarrassing. I've never been able to keep a job because of it. Office jobs are too closed in and co-workers find me offensive. Restaraunt jobs are too hot and humid, and I can't afford to sweat when working outdoors. I still am not sure what to do. I can't see a doctor because I don't have insurance, because I don't have a job. And it's hard to keep a job because no matter how well suited I am and how well I do, and how friendly and personable I am, my employer finds a reason to let me go. (I think I know the real reason why) And, could I really blame them? People don't understand...because they don't know. P.S. Does anyone know of any work from home jobs that are legitimate?
    I keep hoping that it will ''just go away'' one day, like the doctors, who had no clue, told me. Otherwise, I can be thankful that mine is mostly in just the armpit region. I feel for people who suffer from it in their groin area. I couldn't imagine having this agony located in that region. I'm doing research, now that I know what it is, and hopefully there will be a treatment that works. And if I never find it, I must still say that I am very blessed in so many ways; even as 'disgusting' and excruciatingly painful as this can be, I am fortunate.
  • youtoo?
    I am so sorry to hear this. I wish that it wasn't like this. Thanks for sharing, though. In some selfish way, it's good to know that I'm not alone.
  • sars1234
    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!!
    • merlin68
    • By merlin68 21st Jul 11, 10:30 PM
    • 2,312 Posts
    • 2,341 Thanks
    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.
  • martin the sparky
    HS Sufferer also
    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.
  • hammerwell
    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.
  • annie02
    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
    Last edited by annie02; 02-03-2014 at 11:47 AM. Reason: spelling
  • annie02
    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
  • bll78
    Hi I do not have this terrible condition but wanted to offer some advice on the question about DLA.
    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?
    Originally posted by cleomolly
    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.
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