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Hidradenitis Suppurativa
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Hello all,
I hope all fellow HS sufferers are doing well, and are as pain-free as is possible with this condition.
Just wondering how do ye cope (or not) with working? I am currently out of work, and am finding it increasingly difficult to function normally (have a bad dose in the groin area at the moment), namely walking is a serious problem for me at the moment
I was thinking of trying to apply for lomg term illness, although i am not sure that HS is recognised as such. Has anybody had any experiences of this, or other similar schemes? Any help on this would be greatly appreicated.
Best wishes,
I've got a bad dose (for me) at the moment and feeling pretty miserable about it. I'm managing work OK, though every step I take is painful right now, but I have a comparatively sedentary job. The worst thing is if I'm sitting down talking to someone, and I move suddenly in my seat and something catches. It brings tears to my eyes, which makes people think I'm far more invested in the conversation than I really am
Next bit spoilered for the squeamish.I hope this doesn't sound gross, but I took an old soft bath towel and cut it into portions, and I line my trousers with those - stops the seams rubbing and catching and helps a bit. It requires a lot of changing and washing the towels, but does make walking easier.
My big worry at the moment is the amount of weight I've put on - I want to start the Couch to 5k, but am putting it off because of the pain, and am pretty much getting no real exercise at the moment. Every time I try to go for a walk/run I come back covered in blood and beside the pain I just find it humiliating. I met a neighbour on my way back day and we were talking on the footpath when he suddenly went white and pointed out that I was standing in a small pool of blood
He wasn't to know, but what do you even say to someone?0 -
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Hi
has anyone with HS suffered from a pilonidal cyst also?,
I just had 1 removed last week and it was left open for healing from inside out and the dressing is a foam dressing that basically fills the cavity of the area that was removed. (cavicare I think) anyway just wondering if any1 has experience witht these dressings as I am supposed to take it out and clean it 3 times a day an as they say just pop it back in !
that is not the easiest task in the world to perform and I am not normally that squeamish. I have had my axilla and groin surgeries done for HS in the past. But on this cavicare thing any advice?, I need to go and get a new one moulded next week
SS:cool:0 -
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stupidskin wrote: »Hi
has anyone with HS suffered from a pilonidal cyst also?,
I just had 1 removed last week and it was left open for healing from inside out and the dressing is a foam dressing that basically fills the cavity of the area that was removed. (cavicare I think) anyway just wondering if any1 has experience witht these dressings as I am supposed to take it out and clean it 3 times a day an as they say just pop it back in !
that is not the easiest task in the world to perform and I am not normally that squeamish. I have had my axilla and groin surgeries done for HS in the past. But on this cavicare thing any advice?, I need to go and get a new one moulded next week
SS:cool:
Hi SS,
I have pilonidal also. I never had to use the cavicare.
From what i have read, it isnt 'unusual' for HS people to get pilonidal cysts, and vice versa.
There is a dedicated thread for pilonidal sinus on the site, and some of the posters there might be able to answer your question:
http://www.boards.ie/vbulletin/showthread.php?t=2055145515&highlight=pilonidal0 -
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A good friend of mine used to suffer very badly with this and the only way he got shot of it for good was by changing diet completely.
Following Your one from i'm a celeb get me out of here? mckieth's books.
no drinking, no smoking, no chocolate, no cakes no fried foods, no white breads or rice. etc _ever_
basically rabbit food for life.
Thanks ntlbell, I am on a fairly good diet already as it helps with the HS so my weight is average for height, now the smoking.........it's all I have left
Ended up on fluflox 4 x 500 daily for 5 days after the op as I think an active area of HS may have gotten into the pilonidal.. getting better now though. Only thing is I'm wodering about how long b4 I consider going back to wotk. involves sitting all day and a 45min drive??0 -
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stupidskin wrote: »Thanks ntlbell, I am on a fairly good diet already as it helps with the HS so my weight is average for height, now the smoking.........it's all I have left
Ended up on fluflox 4 x 500 daily for 5 days after the op as I think an active area of HS may have gotten into the pilonidal.. getting better now though. Only thing is I'm wodering about how long b4 I consider going back to wotk. involves sitting all day and a 45min drive??
Well a "good" diet isn't enough I don't think, the sacrafices nearly killed him
We're not talking eat your 5 a day and go for a walk here.
if we take the avergae person who eats "healthy" take them and remove about 95% of what they're eating and that's probably getting closer
it didn't "help" it cured it.
I wouldn't last two days on it i'd say. giving up drinking and smoking can be tough but then add to that never having a bit of chocolate again, I'd lose my mind. 0 -
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Hi,
I think i have been suffering from HS for around 5 years in total but was only diagnosed over a year ago.
I was prescribed tetracycline but didn't find that helped so returned to my dermatologist and was then prescribed Erthyomycin which i have been taking twice a day for over a year, tablets are 500mg each and caused vomiting in the beginning. But i presume my tummy got used to them, however i still often feel sick after taking them. I am not sure if they beneficial to me but i would not like to discontinue, just in case.
I was referred to a cosmetic surgeon in the Beaumont last month and he said that they were one of the worse he has seen and are quite infected. I have the opportunity to have surgery but i am unsure as i have heard it is painful and diffucult to heal. I don't think the surgeon was advising surgery as it is a hit & miss procedure with a 10% likelihood of it reoccurring-Even though i don't think i'm in that 10% 
My 'lumps' are under my left and right arms, the left mainly being the worst, but one lump/scar is really raw (as in open). I tend to cover them with a plaster during the day but i am not sure if this is the best thing for them. I do this so that my tops/dresses do not irritate them.
I try to see the best in this illness though, as i'm sure there are people worse off that us, but is ssssoooo annoying as it is such an 'ugly' disease
Thank You All For Previous Posts
(PS, this is one of my bad days as i have read all about HS in this board before but have never posted)
From A Sad Bear xxx 0 -
ClaireBear10 wrote: »Hi,
I think i have been suffering from HS for around 5 years in total but was only diagnosed over a year ago.
I was prescribed tetracycline but didn't find that helped so returned to my dermatologist and was then prescribed Erthyomycin which i have been taking twice a day for over a year, tablets are 500mg each and caused vomiting in the beginning. But i presume my tummy got used to them, however i still often feel sick after taking them. I am not sure if they beneficial to me but i would not like to discontinue, just in case.
I was referred to a cosmetic surgeon in the Beaumont last month and he said that they were one of the worse he has seen and are quite infected. I have the opportunity to have surgery but i am unsure as i have heard it is painful and diffucult to heal. I don't think the surgeon was advising surgery as it is a hit & miss procedure with a 10% likelihood of it reoccurring-Even though i don't think i'm in that 10%
My 'lumps' are under my left and right arms, the left mainly being the worst, but one lump/scar is really raw (as in open). I tend to cover them with a plaster during the day but i am not sure if this is the best thing for them. I do this so that my tops/dresses do not irritate them.
I try to see the best in this illness though, as i'm sure there are people worse off that us, but is ssssoooo annoying as it is such an 'ugly' disease
Thank You All For Previous Posts
(PS, this is one of my bad days as i have read all about HS in this board before but have never posted)
From A Sad Bear xxx
Hi there,
Sorry to hear of your situation. As for your diagnosis, many people go many years before getting the correct diagnosis. A recent survey of std clinics in Scandanavian countires showed that just under 10% of those being treated for stds didnt have any std at all - it was in fact HS which hadnt been diagnosed properly!
I have had both armpits done in recent years, and have to say it is one of the best things i have ever done. No reoccurence yet, although the HS has appeared elsewhere in the meantime.
As for the surgery, it wasnt all that bad. In my case, i found the site from where they take the donor skin to be irritating and most troublemsome. The area from my armpits wasnt much trouble at all (once you can get through the first couple of dressings changes, you will be grand).
Below is a link to a clip from the Embarassing Bodies series on Channel4, and you will see an overview of the surgical procedure. WARNING - contains some gruesome images. If you are queasy, dont watch
http://www.youtube.com/watch?v=yjg0e5D3VVE
As i mentioned i had this procedure done on each arm. In the first op, i was back to normal (functioning arm which could stretch and lift etc) within about 6-8 weeks.With the 2nd op, i ran into a few problems with a minor reoccuring infection at the wound site, but nothing too major.
If you want to know anymore, please feel free to get in touch.
Best wishes, and i hope you are as pain-free as is possible.0 -
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sounds like you have it awful bad too,its so unfair that theres not a treatment that can cure this but most doctors are only aware of it recently, some not at all so hopefully in time a cure can be found(fingers crossed).iv not been to see a dermatologist,i feel like its a waste of time to be honest as 3 different doctors and a plastic surgeon have all said theres nothing that can be done.its a horrible thing to live with,ppl who arent effected dont understand..i cant wear sleeveless tops or dresses and am constanly aware of the odour..if i use deodorants it agrivates it so im constantly washing ..even my kids are making comments which hurts like hell.the lumps are only in my armpits but seem to be getting worse as time goes by and im dreading what they wil be like in the future.
it actually feels a little better knowing your not the only one who suffers,thanks for your reply 0 -
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sounds like you have it awful bad too,its so unfair that theres not a treatment that can cure this but most doctors are only aware of it recently, some not at all so hopefully in time a cure can be found(fingers crossed).iv not been to see a dermatologist,i feel like its a waste of time to be honest as 3 different doctors and a plastic surgeon have all said theres nothing that can be done.its a horrible thing to live with,ppl who arent effected dont understand..i cant wear sleeveless tops or dresses and am constanly aware of the odour..if i use deodorants it agrivates it so im constantly washing ..even my kids are making comments which hurts like hell.the lumps are only in my armpits but seem to be getting worse as time goes by and im dreading what they wil be like in the future.
it actually feels a little better knowing your not the only one who suffers,thanks for your reply
Hi Sue,
Glad you found us, and you are most definitely not alone on this.
I had tried the traditional doctors for years, and got nowhere (after a lot of prescriptions for antibiotics etc). However, i have to say that since i saw a dermatologist (about 2 years ago) my HS and life in general have improved enormously. Give the derm a go : you have nothing to lose and imho, a lot to potentially gain. Many doctors like gps etc, wouldnt necessarily be aware of some of the newer treatments available. If your derm is anyway on top of his/her game, they will at least offer you some options.
As for general washing and hygeine, have you tried HibiScrub? (It is widely available in most pharmacies etc). I started using it recently (like you, a normal deodarant would irritate etc) and it most defnitiely helps me.
Regards0 -
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Hi everyone. I've just spent the last hour reading throught this thread. I have not been diagnosed with HS but for at least 2 years now (I'd say probably more like 3 or more actually.. can't remember when it started!) there is an area in my groin which regularly swells up and what I thought was just a nuisance of a spot which wouldn't go away. After a particularly bad swelling the past week, it only occurred to me to look this up online today and given what I've seen it really does seem to be something similar. I will occasionally get swelling in one armpit too but no boils.
To those of you who have it - did it get worse over a long drawn out period of time? I'm quite worried about it now but if I'm honest I'm only 24, living on my own and in no position to be spending all my wages on doctors visits and meds. From experience, the swelling usually goes away so I tend to just put up with it while it's there but if it's likely to get worse and worse over time then perhaps I ought to see someone about it 0 -
Hi everyone. I've just spent the last hour reading throught this thread. I have not been diagnosed with HS but for at least 2 years now (I'd say probably more like 3 or more actually.. can't remember when it started!) there is an area in my groin which regularly swells up and what I thought was just a nuisance of a spot which wouldn't go away. After a particularly bad swelling the past week, it only occurred to me to look this up online today and given what I've seen it really does seem to be something similar. I will occasionally get swelling in one armpit too but no boils.
To those of you who have it - did it get worse over a long drawn out period of time? I'm quite worried about it now but if I'm honest I'm only 24, living on my own and in no position to be spending all my wages on doctors visits and meds. From experience, the swelling usually goes away so I tend to just put up with it while it's there but if it's likely to get worse and worse over time then perhaps I ought to see someone about it
@ hwayte,
To answer your first query, might i suggest you talk to your gp, who may then refer you to a dermatologist. It is the derm who will be able to confirm HS or give you a different diagnosis.0 -
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Hi everyone,
I read people's stories on this thread and felt the need to write my own story. Reading other people's harrowing stories both scared me and made me feel lucky... if you can call having a milder story to tell than some of you had lucky....
I'm 38 years old, female, have been diagnosed with HS for 8 years. Mainly I got the lumps in my armpits but they were relatively small and managable. The ones on my left armpit were recurring all the time and I was put on long courses of antibiotics by my GP (I was fortunate enough that he had a nurse working for him who previously worked for a surgeon who deals with HS, so she was very helpful to me), which would keep it at bay, shrink it, but as soon as I was off the antibiotics, they would come back. Eventually I had a surgival procedure in my left armpit, that was about 6.5 years ago, didn't need skin graft, had about 15 stitches and that healed really well and now you can barely see the scar.
I've had no major recurrances for years. I changed my diet to a healthier one, rarely eat meat, just fish, veg and carbs, eat plenty of nuts, whole wheat, fruit and yogurts.
A year ago I started going to the gym and dance classes and shrunk from a size 20 to a size 12, losing over 4 stones in the process. My skin had cleared up, my secretions reduces to a few blackheads here and there.
I recently started laser hair removal and saw this as another way to reduce any lumps coming, which usually form or start near infected hair follicles/ingrown hairs. I have very curly hair, which I understand is something shared by many HS sufferers.
About 2 months ago, a serious lump came up in my groin. It was horrendous, big, angry and red, the size of a golf ball. I was in denial for a bit, I was so angry it came back! I had nearly forgotten I had HS! Finally went to get it seen to yesterday. Was sent straight to A&E of a hospital, where I spent an entire night in the waiting room. Got it lanced and drained this morning by the loveliest nurse practitioner who was very knowledgable about HS. She did the whole thing with local anasthetic and laughter gas and it was relatively painless and she was lovely keeping me talking the whole time so I forgot to hurt... Luckily it wasn't infected at all, just inflamed, and I don't need antibiotics. Hopefully it will settle down again but if it doesn't, this time around I'm not messing around with long courses of antibiotics that knock the socks out of me, but don't prevent a recurrance. I'm asking for surgery straight away. Maybe its a radical approach for some, but my belief is if you get it while its still not so big and remove it, maybe the skin grafts won't be necessary, and if you get it all, it may not come back.
I've read all about your advice on various courses of treatment and also did my own research. I think some of the anti-inflammatory (anti-TNF-alpha]) drugs are too drastic for me and I'd be afraid of the damage to my immune system. I know that for some people the risk is worth it, but I don't feel I'm there yet... hopefully will never have to.
I just wanted to say to people who may have just been diagnosed and are reading this thread feeling scared by some of the more extreme stories, that not everyone has such a severe experience, mine has not been too bad, I've had one surgery, not needed skin grafts, had a quiet few years (which must at least in part be attributed to the changes in my diet and overall fitness) and its now just come back. Hopefully not for long! I'm determined to do everything that I can to reduce the effects of HS on my life and not let it control me. I used to be very conscious of the scar in my armpit always wearing sleeves and avoiding sleeveless tops. I then didn't care anymore and since then, I've met at least 3 women on a night out who correctly identified it as a HS scar as they had similar ops/scars too! 2 of them I knew as acqaintances, but never knew they had HS. I guess you don't speak about it much on a night out! Seeing the scars made me feel better that there are others out there going through the same thing. Not so isolated.
I'm happy to have found this thread and will come back to it now I know its there...
all the best to you all.0 -
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