Hi everyone hope you are all ok what i want to know how do you cope with hidradenitis suppurativa when you get addmited to hospital for some other illness and be embarrased with the mess your body is in.well it happened to me i was addmitted for surgery to my foot and when the nurses were going through the addmission procedure they both screwed up there faces thinking i didnt see them and they were treating me like i was some lower class person that never washed, i felt so dirty and was near to tears with there comments i just wanted to go home and hide myself away i was so embarassed, i then told the nurses that there comments was unprofessianal i dont think i want to go in to hospital ever again i just want to lock myself away. The nurses on this ward had never seen this before.is this horrible condition so rare that this has to happen? i am now out of hospital and like i said it was the worse experience of my life, has anyone else been treated bad like this ?it might make me feel a bitty better if i knew that my experience was not unheard off and someone else knows what its like to be treated like this :oops: :? :cry:
I have had a couple occassions like this so please don't think your alone! its always difficult living with this disease but we can't let ourselves be brought down by others. I deal with this two ways, either take a deep breath realise there are others much worse off somewhere and ignore their ignorance... or address it head on, I have taken to explaining the condition in advance of any such medical encounter, I even informed my dentist the other day! It is remarkable how much the condition can affect your heath in general and every part of your life so sometimes its just better to swallow any pride and tell all!
I have had HS for 12/13 years and tries most things to help. I probably only have stage 2 so not as badly as some but am a great believer in holding your head high and not letting it get the better of me
Hope this helps.x
Jve just checked myself out of hospital after surgery for 3 major abcess's, I was in so much pain I couldnt sit stand or lay down, I stood crying waiting to be seen for 3 hours then rejected by all departments, finnally admitted asked if I was injecting, injecting what I said, drugs they said we have to ask, omg Im just an ordinary married woman whose kept this a secet for so long but this time it was reslly bsd and now I was made to feel like scum, ive never been treated like this before. After surgery 12 hours later, I was put in a corner and I had to ask for pain relief no one asked how I was or took my obs, for three days I lay there I had to ask for my dressing to be changed and they tried to yank it out I was screaming so they gave pain relief to do it, I wasnt even offered help to wash, so I checked out and then they said what about pain relief.......I just laughed......This is England:cry:
hi. I find the majority of NHS workers are ignorant and uneducated to this condition. While on the ward waiting for my first operation I overheard the nurses saying \" whats it called?, what is that ? eergh.\" i felt like telling them to go google HS and also the words unprofessional and discretion. the thick uneducated muppets what they are. Don't let it get you down. It really is their own fault that they are a bit dense! :D
I feel your pain, both mentally and physically. Your post was written some years ago, so I hope you've not had a repeat experience since.
For years and years I've visited the doctor with this complaint, only for him to tell me to shower more.
I'm a very clean person, bathing at night, showering in the morning, so I felt hurt and humiliated by his comments.
He made me feel so ashamed. I tried everything to get cleaner, I mean if a professional like doctor tells you you're not clean enough, then you believe them don't you? I scrubbed and scoured my skin, even resorting to using bleach (not recommended), the pain was indescribable, all to no avail, and of course making it even worse. It was with the help of the Internet that I diagnosed myself and asked to see a skin specialist. (Which i did and It stopped for about 18 months then came back, I'm just putting up with it now. I gave up work it's so bad).
It's understandable that not a lot of people, ie doctors, nurses and other health professionals have heard of it, i hadn't until i researched it, (although the television series Embarrassing Bodies has covered it a number of times).
It is a horrible disease, but it looks like we're stuck with it, so chin up, none of us are perfect. One day someone will find a cure, I do hope it's in my lifetime.
I had a similar experience to you Kay. I've suffered with HS for many years,but only after it ruined a holiday with friends that I finally had it diagnosed. I went to my GP and he just said Yuk when he examined me.(unbelievable, but true).I can identify with how you felt.. Thankfully he referred me to a dermatologist who not only diagnosed HS,but specialised in the condition. I cried and cried,and I'm a grown woman. She said there was no cure,but I could keep it under control. This,with her help is what I am doing. She prescribed various lotions,creams and tablets and it's much improved. It's true that not a lot of nurses & doctors have heard of it. It's not a condition that can be discussed with friends or relatives either.~well not in detail anyway. I note that your HS returned after 18 months and you've had to give up work. Is there no other treatment that your dermatologist can prescribe? You're right it is a horrible complaint and I think deserves more compassion and understanding by the medical profession. Take care
Thanks dotcon for replying. I'm glad you've got yours under control and long may it last, it sounds like you've got an expert to look after you.
I was seeing a specialist for a good long time. I would have antibiotics (long term) along with lotions and potions, they work for about 18 months then the gremlins come back, so I stop taking the antibiotics. I've gone through all the antibiotics available now and still they come back. They didn't know what else to do with me, so referred me to a plastic surgeon. This meant cutting deep to get them clear and skin grafts were mentioned which I just didn't fancy. I'm tempted to have them cut out but as we all know by the time an appointment comes round they've disappeared only to reappear the following day/week/month. The reason I gave up work was not purely due to HS, but it was a major contributory factor as I was in so much pain most days so when redundancy came along I took it.
I would be interested to hear if anyone else has noticed a strange thing that happens sometimes, which is if I get one say in the middle of my left armpit, another one will appear shortly afterwards in the right armpit but in a slightly different position. This has happened time and again all over the body : groin, armpits, backside, arms, breasts, hips. Does this happen to anyone else?