Rash,sticky skin,and perennial abscess

[Cb1963]

quite a bit to get through I'm a male in my mid 50s,I have a constant feeling my skin feels sticky and occasionally get a rash in the groin area,I've used a topical cream which gets rid of the rash,but ultimately my skin feels constantly tacky down below,my personal hygiene is of a good standard,had perennial abscesses before and had surgery on them when I had flare ups,but eventually had to have more intrusive surgery last year for removal of what I thought would be the end of the matter,however the flare ups have started again and man o man I've just had the mother of all flare ups,finally ruptured but didn't go to the doctors as I couldn't handle this one being touched,so its finally heald after 3 weeks,but soon as that one had gone another one started up just above the previous one I've been on numerous course's of antibiotics over the years and until someone understands how painful these are and how unclean you feel and the embarrassment that goes along with it,this feels like a taboo subject,I've been under a skin clinic and I've heard the word hydragenitus (spelling?)been mentioned before,but no longer at the skin clinic after my previous surgeries,and finally just to cap it all I've got quite bad facial acne!!! Man I don't feel like a teenager but so fed up,I'm not diabetic even though I've got all the classic symptoms skin darkness around the neck,I know this an awful lot to study and anyone whose got through this and can shed some light in the above mentioned would be gratefully appreciated,😐

[lovesradio]

You are a brave man for posting on here on this sensitive subject. Is there a men's health clinic in your local GP or hospital as sounds like you need a more holistic or systemic treatment rather than topical 'elastoplast' solutions. I'm sorry I can't suggest anything better but I hope you find a better solution.

[theVenerableBede]

I'm guessing what you've heard is hidradenitis suppurativa - which would be worth checking out.

[lobbylou]

hi i suffer from hidranitis suppvatria and have done so for 20 plus years, i totally understand as to where you are coming from and i also understand your pain, it is not pleasant and i totally understand when you say how taboo this is after a lot of surgies where the lumps were just cut out (they then came back a lot bigger) i had plastic surgery done under both my arms.I dont regret having the surgery but what i wasnt told is that the lumps will go to different areas.I m not sure where you live but if you can be referred to Dr Dessai at Guys Hospital then do she is experienced in HS and they will not give up.Sadly there is no cure for HS but once you have name for the condition then that is half the battle.

People do not understand the daily battle of finding clohing that doesn't irrate where the lump is the embarsement of when the lump bursts (which can be smelly) and not being able to tolerate being touched where the lumps are.If you research HS on line im sad to say you will see how common it is but you may also find some ways of getting some releif,i.e i tried hibi scrub didnt smell lovely but it gave a bit of releif,i have been on many antibiotics but to no avail and tried tropical creams but thats not to say they wont work for you.

But please ask to be referred dont suffer in silence i know how embarrsing this is .

being female i was diagnosed the pill dianette as it is used for acne as well but couldnt stay on i long as started getting migrains but you could ask you gp if they were willing to prescribe and mointer you on it

[Cb1963 in reply to lobbylou]

thanks for your reply yep have read up a little on this blessed condition,and I was on a tablet call roactain and these gave me horrendous headaches whilst I was asleep,this was a special prescription only to be given out by the skin specialist at the hospital,so it sounds a similar type of medication,so I'm sorry you've got this condition and yes the smell is pretty horrible,so sympathy with you as well thanks again for your input,btw I live in Scotland,ttfn

[Cb1963]

btw,do you feel like you skin feels tacky or sticky? Sorry to ask but as you have the same condition it makes me wonder if I've got something else festering,nightmare situation

[lobbylou]

yep it is a horrible feeling on the skin i have also noticed i do seem to attract the gnats lol,

have just had a rather large lump on my stomach which was infected so needed more antibiotics. It is a vicious circle as it seems as one lump bursts another comes up. i am at stage 3 as it goes in three stages, i keep being told hopefully i might grow out of it hahaha not sure when.

It can also be heriderity so there might be someone else in your family suffering quietly.

Do you have any dressings from the doctor like mepore dressings as i find these useful i get these on prescription.

I dont think people understand how painful HS is also how down you get as it is so painful to move about when you get the flare ups.

I have agreed for my DNA to be studied at Guys to see if there is any pattern that forms with people suffering from HS and will be intrested to see if they find a starting point then hopefully they can then treat this horrible diesease.

i have listed some of the other medication i have tried it might be worth a try

tetracycline,clindamycin,erythromycin,oxytetracycline i was also prescribed tropical creams but they never made any difference to me but might be worth a try for you

[Cb1963 in reply to lobbylou]

yep we get get alot of them pesky "midges" here in Scotland,I tend to avoid woodlands lol,and looking through the list I've had the antibiotics mentioned,and I had a close call with an abscess on my appendix which had ruptured,had to have life saving surgery and was in ICU afterwards and 4 months of work,so ultimately I sometimes feel that I'm a big bag of puss! Ugh,sounds disgusting,I've also noticed as soon as one has ruptured there's another ready to show its ugly head,I believe my father suffered in his younger days,and I know my daughter has inherited my "bad" DNA,and she has had terrible acne as a teenager,I felt so sorry for her,and yet my son has been blemish free,unless the missus had a visit from the milk man LOL! I haven't come across anyone with this condition that I know of,but cause it's a real personal problem I suppose its not one to shout from the roof tops,so all in all, with all the medication I've had along with numerous emergency surgery and having what I thought was a booked in for a "final" surgery they have decided to come back after being a year or so free,but didn't realize until you mentioned that they come back even bigger,(which they have been) please tell me some more good news,but I suffered with ulcerative colitis when I was a young man and I believe this can also be related to this condition even though I've not had any attacks for over 25 years,have you ever had any stomach problems? I'm sorry to be so nosey but at the same time all information helps,so really appreciate you getting back to me,and here's looking forward to the next flare up,I can just about deal with the armpit area,but down below is a total different kettle fish! Thanks again.

[lobbylou]

yep totally agree about the down below area that is bloody painful, i had also a ruptured appendix but was told i was a hypocondriat(sorry for spelling) was left for 5 days before surgery so can relate to that one as well. i have also suffered with various stomach issues but you kinda just get on with things,sadly both my daughters seem to be going down the same road as our-selfs but am keeping very close eye on them.

I found out that if they cut the lumps out they have to make sure they remove the tract as well otherwise they are wasteing your time in removing them.

Im not sure if it is all connected but last year found out i was suffering from prenious anemia (B12 deffincy).

By the sounds of it like me you have a supporting partner my husband has been on various emerceny runs where i have had to have a lump drained as i couldnt bear the pain any more.

I have met a few consultants who have been very intrested in looking at my skin grafts and finding out the after thoughts of having it done so hopefully word is getting about.

I was once told to try and avoid underware that had seams as they could irritate your legs,so will be honest i have tried sloggi brand not sure if they do mens but would of thought so, have also tried to mainly stick to cotton underware.

This is going to sound grosse but how i try and deal with my lumps is i was given a sterlised needle from a nurse and as soon as a lump starts to appear i try and burst it not saying it works all the time and that it isnt painful as it is, also i was given some silver dressings which i cut to size and put over the lumps and even though they advise you to keep the dressing on for a couple of days they can help to reduce the size.

Im sorry its not much good news but i know exactly what you are going through can i ask you a question

do you suffer from depression because of this ?, low self esteem and anxiety

[Cb1963 in reply to lobbylou]

yes I feel totally fed up with them,there's that many aspects that contribute,pain,discomfort,walking,sitting down,and I'm conscious of the aroma/smell as I feel I it's always in my nostrils once they start to rupture,and tbh I don't feel like doing bugger all,also I start cutting down eating,as the more you put in obviously then the toilet will be used more frequently,I had blood test done recently regarding being diabetic,but I've had all the classic symptoms that determines wether or not I have it,but the results came back normal,so you mentioned PA,and I think that's gonna have to be a separate blood test? However have read up on PA and cause I had an internal bleed last year and have to take omeprazole on a daily basis and believe this can cause PA,as it effects the enzymes in the gut,is PA a condition that is definitely picked up with a blood test? As I don't fancy sounding like a hyperchondrict and trying to convince myself that something else is causing me to feel this way,I was treated in hospital with the eradication antibiotics for h pylori whilst in hospital at the same time,so yep all in all thinking that we both have very similar health history,and always good to gain some information around this subject and I don't know if I could sit down and join any sort of discussion groups,firstly it's personal and secondly you just don't know how many people would turn up cause of people's flare ups,and chatting online makes it a little easier,hope this has helped someway with your condition,thanks

[lobbylou]

pa is done by blood test i totally understand about going to support groups as its not something i could do,dont know why but you are the first person i have really spoken to online. Not sure about yours but my white blood count is always high am due to see an haematologist in august to see if they can throw any light onto why it is high, not bad going as only been high for past 13 years lol,the other medical problems i have are : excess hair,polysitic ovaries,diabetic type 2 only found that out by accident,pa,HS,severe sciatica,nerve damage,high blood pressure,depression and for some reason am prone to MRSA so am classed as high risk for any surgery, have problems with my balance as fall quite a lot,have weakness in both hands short term memory is crap.

I have found some peopl including doctors to be quite ignorant of the distress that HS causes as i dont think they beleive the pain the lumps cause, then there are the ones that realise they are painful.

Have you had any where they just leave a hole when they have burst.

I dont know about you but i do avoid most sociable gatherings as im very self concious, even if it is just extened family i feel as though im being judged on everything.

Do you suffer from feeling hot all the time as if you are in a sauna even in winter.

[Cb1963 in reply to lobbylou]

unreal,yes I've got peripheral neuropathy (nerve damage),blood pressure okay though,as for leaving a hole the last one took nearly 3 weeks to heal up,but I think they leave a permanent indentation,as the majority are down below,I normally put the preverbal needle and prepare yourself I squeeze them,agony,and az for down below that's the when my enforced days start as it would be impossible for me to do anything with a needle down in that area and to be honest I can't stand the pain with anyone interfering with them,unless I get knocked out surgically and as your probably that's when the packing of the site with gauze is as painful as the abscess itself,I eat a healthy diet and don't drink,so all in all these are very distressing,I don't know what doctors think wether these things are classed as "painful",but you don't get a general anaesthetic for nothing,I know they're extremely painful and so do you,I don't know how some doctors can say it's not painful well then I wouldn't class them as doctors,yep I think the hot sensation is the nerve damage,and when I have a flare up I don't go out,I'm a pretty strong person mentally but sometimes I ignored my health problems I lost my father last year and knew something bad was going wrong inside me whilst waiting for the funeral and eventually rang nhs 111 and was admitted to hospital for emergency surgery,so much so I had the surgery and a couple days later was aloud time out from the hospital to attend the funeral and then back in for several more days,so I'm no whimp when it comes to dealing with pain,and these abscesses are right at the top with the pain factor,so I don't think even educating people about this condition would make any difference,cause I suppose they think out of sight out of mind,how wrong they are! 😢

[patchrv in reply to lobbylou]

Hi, I would think that your white blood count is high because of all of the conditions your body is fighting. Your immune systems is working overtime to combat invading bacteria while protecting your organs. Just a thought. I have a dear friend who's son has been battling the lumps for years, surgery after surgery. I wish someone could find help. Doctors don't fathom the excruciating pain.

So glad for everyone's input. Thank you

[Cb1963 in reply to patchrv]

Yep had the same one now for over 6 months, it keeps coming and going and the same with the armpit area, but the one down below is the one that's causing me the most issues, spoke to the doctor and for some reason he doesn't want me to see the surgeon, but he said removing it doesn't mean it will go away, yep I understand that but how long do you have to wait before it will get removed? I know this particular one is stubborn and will definitely will need to be surgical removed and in the meantime I'm walking around like John wayne,God I could of done a whole series of embarrassing bodies over the last few years, countless antibiotics etc, yep it's not much fun, and my thoughts to any one with the same condition, 54 years of age and suffering with acne,pretty depressing,and no light at the end of the tunnel,a few weeks in gran canaries would be nice, another bad summer up here in Scotland, and been stuck in the house,even getting Iceland home delivery, so yes they are bloody painful and restrict your lifestyle amongst others things to personal to mention on here, but thanks for your reply and advice, and taking time to give me some more information, cheers, or as in my case bottoms up lol, Doh!

[lobbylou]

very, being nosey do you work and if so how are your employers with regards to having days off sick,mine tried to have me dismissed after my skin grafts,then said i was a liablity but after medical which hr sorted they couldnt discriminate they tried but was glad when company ceased trading.

do you have any hobbies?

where abouts in scotland are you i live in kent

i dont think any of us are whimps as the pain and the feeling we have to put up with i wouldnt wish on my worst enemy.

I am virtually housebound and only go out with daughters or hubby oh sometimes my son but that is mainly for hospital or doctors appointments.

[Cb1963 in reply to lobbylou]

nope don't work anymore dur to similar circumstances the same as you was a plumber but with all the bending down involved it was impossible to keep hold of a well paid job,numerous operations etc,so disappointed that an illness has caused all the other problem's that come along with having a long term condition,yep not far from Glasgow,used to like fishing but even that's on the back burner so a pretty miserable existence 😐

[Cb1963]

and another place I get them pesky flare ups is behind my ears! Thinking my problems really started to take a hold was when my appendix ruptured,and Ever since then HS has become full blown,I had my tonsils removed and my adenoid's removed as a child,but suffered with acne and stye's on my eyes as well,so I'm wondering if this has caused all these problems as even though the body parts I've had removed aren't really important to live with I've heard that these are part of the human immune system,so was wondering if your specialist has ever conducted any surveys on patients regarding the lack of these organs? And how many suffered with or still suffering with either chrones disease or ulcerative colitis,I know it might seem alot of questions I keep on asking but the more I know about your condition the more we have in common and unfortunately not in a good way for both of us,and looking for answers is not easy,so once again its been real eye opening conversation and having a partner who understands your condition is a blessing,and it's frustrating for them knowing that we're not in a pleasant place,thanks again for your symptoms and I hope you stay relatively lump free,my best regards to your family 👪 ttfn

[lobbylou]

ah thankyou, they say it can start with acne and likewise my immune system is shot,i will ask my daughter as for her A level science assisgnment she did it on HS and the amount of information she used was really good, I will have a look through all my hospital letters and info and see if there is any link with chrones disease or ulcerative colitis and let you know.

hope you get a few days of being pain free to give you a break before the next flare up.

I dont mind at all the questions if i can help you i will sadly as a lot of people are embarrsed my self included with this horrible disease hope you can enjoy a bit of sunday pain free

[Cb1963 in reply to lobbylou]

hey that's really sweet and most kind,and who knows there's something that your daughter can find and help with,maybe and she'll keep ahead of any future developments,and I'm sure she'll be thinking ahead of her own wellbeing,so my next plan off attack is going back to the doctors and start all over again,think he's seen more of my backside than my face! Got to try and make light of this situation otherwise I'll never get to the bottom (bad joke I know)of this matter,thanks again,ttfn

[Md2lh9c]

Research Medorrhinum. This cured all cases. It could be worth a try. Or Elaps

[Cb1963 in reply to Md2lh9c]

will do,thanks for the info cheers