hidradenitis suppurativa

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

kimlunney7 wrote: »

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?

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

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.

Nicole

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
secondly
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

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.

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 ?

Tash_Goswami

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?

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.