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Original poster

bumps , boils and abcess'/ hydradinitis suppurentiva

48 replies

generaldogsbody1 · 12/10/2006 22:02

HS is a pain in the ass, literally. I am interested to find out how many people who use MN have this condition, or suffer from the symptoms but have not been diagnosed.

the symptoms include multiple or recurrent boils, abcess'or leissions(sp) in the groins, arm pits and under breasts

I have suffered from this for 13 years and have at the very least, 3 abcess' on the go at any one time.

HS is classed as an orphan disease and as such gets very little in the way of funding for research. However, I feel that if HS was more widely recognised and diagnosed this would not be the case.

the symptoms are very commom esp in women. please tell me your experiences and treatments that have been used. Give me ammo to fight for some relief.

surgery is my next option and i would rather give that a miss

OP posts:
Original poster
generaldogsbody1 · 12/10/2006 22:26

bump, can be hormone related.

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dinny · 12/10/2006 22:36

what is an orphan disease?

dinny · 12/10/2006 22:38

btw, think me and my mum have this as always getting sebaceous cysts (ear/scalp) and I think ds may be prone to it as he has sebaceous cyst on head and he also had a perianal abscess (not sure if related...) had never heard of this condition till reading your post - are you a severe case, GDB?

Original poster
generaldogsbody1 · 12/10/2006 22:39

An orpha disease is a condition that doesn't affect enough of the population to be considered a significant research option or problem.

hope that was clear lol

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dinny · 12/10/2006 22:41

have always thought that I was a cyst-y type person (mmmm, sounds attractive, yes?) didn't really think other people may be too!

so what do you do about your abscesses, GDB?

Original poster
generaldogsbody1 · 12/10/2006 22:44

mine is severe, but not as bad as some others i know. as it is not recognised as as a serious or debilitatin disease it can be very difficult to claim benifits

I can work and have an understanding employer. Is kinda hard to work when you feel as if you have three extra heads growing in your nethers

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dinny · 12/10/2006 22:47

you poor thing - have you had surgery, have them fomed fistulas now? (my ds had a fistula surgically laid open last year)

Original poster
generaldogsbody1 · 12/10/2006 22:47

when really bad i use anti biotics, i have become resistant to most due to long term use. Vicks Vapo rub is a god send, when really hot and bouney. lol. Sounds mad but it works

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Original poster
generaldogsbody1 · 12/10/2006 22:48

oops burney

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dinny · 12/10/2006 22:48

have you ever tried Tiger Balm? really helped when I had one years and years ago on more forehead (in fact, made it burst)

I had a sebaceous cyst surgically removed under local a couple of years ago (on ear lobe)- hasn't filled up again thus far.

waterfalls · 12/10/2006 22:52

I am quite sure I have this, but undiagnosed.

Hi generaldogsbody1

Original poster
generaldogsbody1 · 12/10/2006 22:52

not tried tiger balm, i try not to encourage them to burst. they can grow very large (current biggest is 3 inches but have been larger after using mag sulph

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Original poster
generaldogsbody1 · 12/10/2006 22:52

hi waterfalls. [smile}

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Original poster
generaldogsbody1 · 12/10/2006 22:54

i hve several fistulas, pants isn't it!

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dinny · 12/10/2006 22:54

oh, God, mag sulphate brings back horrid memories of when ds was so poorly as a baby with periana abscess. awful

3 inches is v big, GDB, do they impede your mobility etc?

dinny · 12/10/2006 22:55

have you ever had any fistulas laid open? ds had his done just over a year ago, and whilst it was awful at the time he has been OK for a year. Does that mean he's in the clear or can it reform? really hope I haven't tempted fate!

Kibby · 12/10/2006 22:58

generaldogsbody - can children get this- I've looked on several websites and there's no mention made of children

Original poster
generaldogsbody1 · 12/10/2006 23:02

I have resisted surgery so far, can't see the benifit of it as Hs often returns any way. Tis due to infection tracking to dif areas in groin. Can't hold out for much longer tho.

Have been told that I should ask for a referal to plastic NOT general surgeon though.

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Original poster
generaldogsbody1 · 12/10/2006 23:04

Kibby- i guess its not impossible, I was diagnosed at 12yo.
Is your dd showing signs of puberty yet?

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Kibby · 12/10/2006 23:07

no, none

dinny · 12/10/2006 23:07

must be a nightmare going to GP as it's so unheard-of...?

Original poster
generaldogsbody1 · 12/10/2006 23:10

I was lucky, my GP runs a dermatoligy clinic also. I think that many people are embaressed about seeing their GPs with this as it appears in rather intimate areas

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Khara · 13/10/2006 19:00

I've suffered from hs since I was about 18. (I'm 36 now.) It tends to vary in severity. At first I got 1 or 2 large painful boils in my armpits every so often. Later got them in the groin area, and occasionally under ears. I'm sure mine is hormone related, as when pregnant or breastfeeding it's much less severe. I'm still breastfeeding dd who's 20 months and don't intend giving up any time soon. (I'm sure part of the reason is I'm scared the hs will flare up if I do.)
I self-diagnosed myself off the web, but later went to the doctor who independently confirmed hs. My dad also has this condition, although not badly.
As I said my condition is very mild, but I am scared it will get worse. I know from when I've had a really bad flare up how miserable it can be.

Original poster
generaldogsbody1 · 13/10/2006 19:43

I realised today that I am making myself younger than i am I'm 27 so i have had it for 15 years lol.

It is a nightmare, had to tahe the day off work today. Can't be chewed with the cowboy jokes

Walking differently makes my spd worse as well

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Original poster
generaldogsbody1 · 15/10/2006 21:01

bump

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