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just outta surgery!!

Posted , 5 users are following.

khloee
khloee

Hi everyone, I've just joined this group right now as I have been discharged from hospital without enough pain relief and its impossible to sleep! (I asked for tramadol but wasn't available apparently).

I suffer from stage 3 HS and was diagnosed ten years ago. This is the FIRST OPERATION I have received and I actually had to ask for it (wasn't offered by dermatologist/gp). I feel like I am constantly being blamed by the doctors for causing my own HS as I am a smoker (I was diagnosed before my cigarette habbit).

I was taken into hospital 4 days ago to have both my armpits completely removed as none of the other treatments worked for me, it was there that I established that surgery wasn't uncommon to treat HS......NEWS TO ME!!!!! I feel that if they had operated even 5 yrs ago, I wouldn't be in the state that I am today.

I am constantly unwell, suffer with horrific pain on a daily basis and contract various infections due to HS. I have questions but no idea who to ask or if anybody else feels the way I do :

1) why can't HS sufferers be classed as disabled?

2) why can't HS sufferers have disabled car badges when they

are unable to walk?

3) are most HS sufferers treated unfairly at work because of the

illness?

4) have any other HS sufferers been treated unfairly due to

smoking/weight issues?

5) has everyone else been passed from pillar to post without any explanation?

WHY ON EARTH have I been sent home from hospital without sufficient pain relief and only been signed off work for 3 weeks after a MAJOR operation?

Is this just me? Am I being ridiculous? Or is the way HS sufferers are treated ridiculous?

Sorry for the rant, I'm tired, sore and fed up!

0 likes, 11 replies

11 Replies

  • napoyheadedgirl
    napoyheadedgirl khloee

    Posted

    Congratulations on getting the surgery.

    However, I do feel this way.

    I just found out what is going on with me a couple days ago. Before then I thought I just had really bad gross acne So I just dealt with the constant pain cause I have always been too embarrassed to talk about it.

    The more I think about it, the more it would make sense for a disability classification.

    Hope you start healing well.

  • nikki1734
    nikki1734 khloee

    Posted

    Hi there!!

    I'm pleased to hear you've finally got surgery to aid you and hope recovery goes well.

    I'm not sure if I can answer all your questions, but as a fellow stage 3 sufferer I will try!

    Surgery is quite often used to treat HS, but unfortunately that can be something of a postcode lottery. I've had a lot of surgery to treat my HS (it's on my inner thighs and groin) over the last 10 years, but I have been told that the repeated surgery in the same areas has caused significant scar tissue. This will make any further surgery very difficult, so unfortunately surgery is not always the miracle cure people hope it to be.

    I too had my weight used against me. until I pointed out that when I first started suffering with HS I was recovering from Glandular fever and was actually massively underweight!!

    You may have only been signed off for 3 weeks to start but that isn't set in stone. The last time I had surgery whilst working I was signed off for 4 weeks to start but ended up off for 16, as they reviewed my progress along the way.

    It could just be me, but I've never wanted the top level painkillers after surgery. Because my HS is on my legs and affects walking quite a lot after surgery, I liked to feel some pain to serve as a constant reminder to take it easy and not do anything that could hinder my recovery!

    As for the disability query, I've found that HS is not classed as a disability but is classed as a contributing factor if you have any other illnesses. I have some mental health issues that I could only get low rate care DLA for, but once I got my diagnosis of HS and informed the DWP (along with my letter from my dermatologist) I was given high rate care, low rate mobility and was given ESA (support group). The thing to remember with disability benefits is that they are not awarded based on what you have, but on how your condition affects your ability to lead a normal life.

    Sorry I've been long winded, and believe me when I say that I feel your pain everyday, like most of the lovely people you will find on this site.

    Hope I've offered something of help to you, get well soon xx

    • hypercat
      hypercat nikki1734

      Posted

      Great reply Nikki and much better than mine.  Bev x
  • hypercat
    hypercat khloee

    Posted

    Hi I am sorry you are suffering so much but well done for getting the surgery you need and I hope it helps you.

    Check on disability law on whether HS is covered but I don't think it is.  It is more how the illness affects you however and if you are in the UK you might be able to get PIP (personal independence payment).   You can get this whether you are working or not as it is a stand alone benefit. 

    Your doctor is bang out of order blaming you for smoking.  The truth is they have no idea what causes it though it apparently is more common in smokers and overweight people.   Lots of sufferers don't smoke or are not overweight.

    I think HS is a very misunderstood disease and is grossly underfunded which is so wrong.  I also think it is a lot more common than officially recognised as so many aren't diagnosed with it,  or not for many years.  I only suspected it (despite many visits to the GP) because a friend has it and I had never heard of it before.  

    Don't ever feel guilty as it is not your fault - it is an autoimmune disease and should be taken a lot more seriously. 

    I hope you are feeling better very soon.    bev x

  • khloee
    khloee

    Posted

    Thanks for it support guys! As for the disability, I don't necessarily need benefits such as money but I think it would be great for the workplace so that they can recognise the conditions rather than shunning us for being ill repeatedly! I just feel that HS sufferers need to push forward on this subject to receive more help and recognition but I'm absolutely not sure on how to do this! Xx
  • hypercat
    hypercat khloee

    Posted

    Hi if you got disability payments you might be able to afford to work part time?  Just a thought.  Bev x

     

  • khloee
    khloee

    Posted

    Thanks for your reply bev. Are you aware of anybody who does receive disability benefits? I haven't looked into HS payments as such. Thanks xx
    • hypercat
      hypercat khloee

      Posted

      Hi it's not HS payments as such.  But if you are considered disabled and are affected a lot by the disease then you might be able to claim PIP.  Check on the govt.  website   Bev x

       

  • james46698
    james46698 khloee

    Posted

    Hi khloee, i'm afraid they do not regognise HS as a condition that warrants any kind of payments or allowances anymore. I was on disability allowance for it many years ago but they stopped it when they introduced new rules saying it was not considered a permanent disability!!!!!! 
    • nikki1734
      nikki1734 james46698

      Posted

      I do get payments for my HS James, both DLA and ESA. But that could be because mine is on my inner thighs and groin and is severe enough to impact my ability to walk most days
  • khloee
    khloee

    Posted

    That's ridiculous James! We should start a petition lol. How can they say it's not consistent??? That's just crazy!
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