HS sufferer for 28yrs, officially diagnosed for 15yrs

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I am 46yrs old.

At the age of 18 I woke up (on a saturday) with a painful lump in my groin. I contacted my GP, which thankfully were open on saturday mornings !. I was given an appt and was told it is an abscess and was given antibiotics !!

Leaving the Doctors relieved it wasn;t anything more sinister, I took the tabs and they seemed to help.

Over the following year, I had the odd inflamation, which started as a pimple, but soon increased in size to anything from 5p to 50p with a large area of redness surrounding it. 

I would always get these in the groin and upper thigh areas, thinking it may be a hygiene issue, I bathed as often as possible.

Majoity of the time I would suffer the pain, not being able to sit, walk and on several occaions not being able to go to work, as I was unable to bear wearing underwear !! I found that the worse time was also during my Periods !!

On the odd occasion I would visit my GP, I was referred to local A&E and had surgery to remove the infected iump. This would then involve visits from District Nurse to pack the hole left and dress accordingly.

On one occasion I had a peri-anal abscess, monitored by GP, I was rushed to A&E at 8pm one evening by Ambulance with a Temp of 104 !! Surgery done, a night in hospital and 3 weeks off work, laying on my front and daily visits from District Nurse until hole was healed.

This went on for some years. At the age of 29, whilst pregnant with my Son, I had a GOLF BALL size lump in my groin. This prevented me from wearing clothing, walking and basically doing every day tasks. I will admit to not being able to get up the stairs to use the loo and having to use whatever what handy to wee in !! 

Affter approx 10 days of suffering with the LUMP (which was a solid mass), I went to my local A&E. They said it was an abscess and would drain it. 10 mins later they re-entered the room with a rather large needle and proceeded to stick it in the lump !! Me screaming with pain and practically being lifted off the bed by the needle, the Doctor decided to stop the process knowing it was not going to work !! I was sent home !!

2 days later, not being able to walk without it looking like I was straddling a horse or bear the throbbing pain, I re-visited A&E. A doctor took a look and was prepared to take me down for surgery. When I stated I was pregnant, He returned with a nurse, local Anaesthtic (x7 injections) and proceeded to cut. squeeze and drain the lump. Several visits from DN, the massive hole healed smile

Since then I have had several inflamations, agony most of the time, but as all my GP would do is throw antibiotics at me (which do not help), I tolerate the inflamation and pain until it bursts with brown smelly stuff and blood !!

I self diagnosed by reading an article in Take A Break !! I bugged my GP to refer me to hospital. On the day of the consult I was asked if I knew what I thought it was, when I mentioned HS, the Consultant looked astonished that I knew and I was correct !!

Since the confirmed diagnosis, I have had 2 operations cutting full length of both goins to remove as many sweat glands as possible to help prevent recurrence, no luck as yet.

As I sit here writing this today (01/03/2016), I have 2 lumps and when I say sit, I mean laying down as I cant sit !! One of the lumps I had 2 weeks ago, for which I took 5 days of Amoxiclav !! That was worth it not !! I have the odd inflamtion in my armpits, but not as bad. I was told not to shave, then told shaving is fine. I dont take a chance and use haor removal cream.

 

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  • Posted

    Oh my goodness what a terrible time you are having! It's so awful this condition! I just feel that I'd like to be given the strongest antibiotics intravenously - whether its a seven day 24 hour drip I'd just love to try it! Straight into my bloodstream! I just feel that when I suffer a flare up that my blood is full of poison - if this was dealt with directly then surely this may 

    prevent the lumps and boils etc. 

    i returned to my doctors today after another flare up and have again been given the usual antibiotics - Fluxocillin 2000 mg per day and then when it's calmer go back on to my Lymecycline! It's a never ending cycle. 

    I wish you you well and I really truly feel your horrendous pain!

    XXX

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  • Posted

    You're not on your own tinytears. The way you describe your lumps and the pain you go through is exactly what I went through, still do sometimes, but to a much lesser extent. I only ever had one operated on and that was a pilonidal sinus on my backside. It took forever to heal and kept coming back so I just put up with the pain with the others, which were in my groin, thighs, Buttocks, underarms and under breasts. The intensity of the pain when trying to dress in the mornings to go to work would make me feel faint.

    After many hours googling, and trying many, if not all, recommendations on how to get rid of this evil disease, I decided to try cutting out nightshades from my diet and for me it seems to work. It doesn't seem to work for everyone, but worth a try.

    I'm over 60 now so it could be that my age has something to do with it, but if I eat potatoes or tomatoes, I do have a flare up.

    Anything is worth a try. Long term Antibiotics worked at first, but they still came back eventually.

    GPs don't have a clue about this disease, for years I was told to keep clean (I shower everyday and am meticulous about personal hygiene). I diagnosed myself, as you did, and eventually got referred to a dermatologist. Despite being prescribed Lotions and potions, none of them worked as good as the elimination diet.

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  • Posted

    Hi Tinytears, geez you have been through the wars.  It's hardly fair is it.  That is life impacting.... I agree... from experience I ended up with 10 days on IV Clyndamicin 3 times a day.  That was to treat a large complicated (pilonidal) abscess... but cleaned up my HS as a result  (I've thanked my Surgeon many times!).. 4 months later going strong.  (so far)

    The IV was definitely very strong compared to anything before.

    I also wonder if a dermatologist could give the clindamycin rifampin oral treatment... if it would work.. my experience with clindamycin makes me think it will suit me if the HS flairs up again.  (also a 20 year sufferer)

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  • Posted

    I just learned that caffein as well has alkaloids , my eating list gets shorter asi read n no vodka as of today smh
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