Hi All,
I'm another one with HS. I try my best to keep away from doctors and procedures to the HS as I don't want this condition dominating my life.
I work full time in an office job and this is great as I dont need to move too much so when I have a flare up is not a massive issue, however, I use public transport (bus) to comute to work and back and lately I've been having a lot of boils on my inner tight area and when they are active I struggle to walk to the bus stop and to work.
What happens is that I've been getting late to work when I have these flare ups on my inner tight due to pure mobility issue, what I normally would take 10 min to walk takes me more than double depending on how aggressive is the flare up and pain. I'm afraid lateness events could affect my job or even make me lose my job in a near future as every time I'm late they make me fill in a lateness form and it goes on my file.
I do have a car sat at home on my parking space and I only dont drive to work because I dont have a granted parking space at my work's building and parking on nearby car parks would be very expensive for me as I spend £2.90 daily for commuting by bus where as to drive and park my car nearby would cost me £6 daily so is out my budget.
I work full time and I've never claimed benefits to my condition, but I feel that it would be of a great help if I could have a disability badge for my car so I could drive to work and park on the street in front of my workplace's building, ceasing my struggle and pain to walk and the late events.
Has anyone here have the disability badge for car parking due to HS? How did you get it? Was easy or a nightmare? How could I try to get one to help me to keep employed? Any ideas/suggestions is highly appreciated.
Thanks in advance,
Liana
Hi I am no expert but I doubt you would get one for HS specially as there is no medical record for it as you don't go to the doctors.
It will have much more impact on your life if you don't go to the doctors with it as you are now finding. There is treatment available to help reduce the number of exacerbations and dealing with existing ones. That's the route to take rather than trying to get a disability badge.
You need to be very careful about infection also as this can be potentially life threatening and can land you in hospital. See a doctor please. x
Hi, doctor is aware of my condition and it's on my file as I've been officially diagnosed this year. I suffer from HS for over 15 years and always was told by doctors it were ingrown hairs, until this year a GP has managed to give it a name.
They have offered me antibiotics and said all they can do is antibiotics and painkillers but this is not cure whatsoever this is to prevent an infection due to open wounds or make up my pain. I've never taken antibiotics for HS even because they have failed to give me a diagnose for over 15 years so I don't think it is relevant as I've been "fine" dealing with HS on my own without medicines for over 15 years. Painkillers only when I can't take the pain as I don't want to damage my liver from constant use of medicines.
I didn't have an issue before because I didn't get boils on my inner tight until last year. Now is starting to be an issue for my "normal" life.
Thank you anyway for the reply
Hi, doctor is aware of my condition and it's on my file as I've been officially diagnosed this year. I suffer from HS for over 15 years and always was told by doctors it were ingrown hairs, until this year a GP has managed to give it a name.
They have offered me antibiotics and said all they can do is antibiotics and painkillers but this is not cure whatsoever this is to prevent an infection due to open wounds or make up my pain. I've never taken antibiotics for HS even because they have failed to give me a diagnose for over 15 years so I don't think it is relevant as I've been "fine" dealing with HS on my own without medicines for over 15 years. Painkillers only when I can't take the pain as I don't want to damage my liver from constant use of medicines.
I didn't have an issue before because I didn't get boils on my inner tight until last year. Now is starting to be an issue for my "normal" life.
Thank you anyway for the reply
Hi, doctor is aware of my condition and it's on my file as I've been officially diagnosed this year. I suffer from HS for over 15 years and always was told by doctors it were ingrown hairs, until this year a GP has managed to give it a name.
They have offered me antibiotics and said all they can do is antibiotics and painkillers but this is not cure whatsoever this is to prevent an infection due to open wounds or make up my pain. I've never taken antibiotics for HS even because they have failed to give me a diagnose for over 15 years so I don't think it is relevant as I've been "fine" dealing with HS on my own without medicines for over 15 years. Painkillers only when I can't take the pain as I don't want to damage my liver from constant use of medicines.
I didn't have an issue before because I didn't get boils on my inner tight until last year. Now is starting to be an issue for my "normal" life.
Thank you anyway for the reply
Hi, doctor is aware of my condition and it's on my file as I've been officially diagnosed this year. I suffer from HS for over 15 years and always was told by doctors it were ingrown hairs, until this year a GP has managed to give it a name.
They have offered me antibiotics and said all they can do is antibiotics and painkillers but this is not cure whatsoever this is to prevent an infection due to open wounds or make up my pain. I've never taken antibiotics for HS even because they have failed to give me a diagnose for over 15 years so I don't think it is relevant as I've been "fine" dealing with HS on my own without medicines for over 15 years. Painkillers only when I can't take the pain as I don't want to damage my liver from constant use of medicines.
I didn't have an issue before because I didn't get boils on my inner tight until last year. Now is starting to be an issue for my "normal" life.
Thank you anyway for the reply
Hi there are a lot of other treatments available apart from antibiotics you know. You need to ask to see a dermatologist to find out about them.
You can take ab's on a daily basis though it didn't help me. When I get a flare up I go to the doctors straightaway and get decent ab's which do get rid of the infection. Maybe you could keep a supply at home if your doctor agrees.
I have also had quite a few incised by a surgeon if they reoccur in the same place a few times. This has stopped those.
Mine started on my inner thighs and I know exactly how painful these can be! I have had quite a few abcesses there which have been agony even when sitting down let alone walking.
I think having more information and more treatment options available (via a dermotologist) is a better option for you but good luck on trying to get a disability badge!
My doctor is telling me that seeing a dermatologist is pointless, is he right?
Well it depends if your doctor is an expert on skin diseases and knows all the treatments available for your HS.
My doctor referred me to a) get a firm diagnosis and b) to find out all the options available to me.
If your doctor has already diagnosed you and told you all the info then it probably is pointless. But for a skin disease I would rather trust a dermatologist than a doctor....and don't forget you do have the right to a second opinon so it is up to you. x
Hi
Please insist on a referral to see a dermatologist. I was recently in your situation but ended up in hospital with subsequent issues due to a flare up that was not treated. My last hospital stay was for three weeks and I feel so much better and can walk/stand/sit without pain. I still have some healing to do but the hospital stay was 100% needed.
i now have different medication that is helping to keep everything under control in order to prevent another flare up.
the advice on dressings and washes and creams have been invaluable and I now feel so much more better equipped and informed on this condition that I my self have had for over 10 years.
PLEASE see a dermatologist and get some more information and treatment options that will work for you.
Katrina