hidradenitis suppurativa
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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
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
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
Thank you for the link to a website on this I will go and have a look.
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.
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.
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.