Your thoughts may help me...

[johnboy]

I had an appointment today with a general surgeon after being referred by my GP. The surgeon confirmed it is HS which is the first time I have been diagnosed with it, he seemed to think ti was quite bad but did not confirm as to which stage it was at.

However he has referred me to a plastic surgeon as he feels that wide excision surgery is possibly the only answer to me and it would be a plastic surgeon who would need to do it.

I asked about also seeing a dermatologist as I have never seen one and the surgeon suggested that there was nothing a derm could do for me and it needed to be  a surgeon who could help me.

So now I am to wait for an appointment to come through with the plastic surgeon. I am a little worried about surgery, I have read some good and some bad stories about surgery and also about it not being terribly successful also. Does anyone have any thoughts on what i've written and any views good or bad on the surgical route and also any comments on a derm not being able to help me.

Thanks to all.

John

[25monkey]

hi john,
so glad you posted today about your appt. hope your ok with being confirmed with hs....sometimes I feel a little time to think about the information your given is the best ..sometimes the more you look and read can also make you have doubts on how to go forward with this. I have no regrets for having my surgery to have the area excised, as it has never come back in that area touch wood !!!!!!!!! hope I havent just jinxed myself...I wished Id found this forum a long time ago, as I was myself in your situation not knowing and scared.
Any way with hindt sight I would take the surgery route again. They have to take several layers of the dermis area and any tracts that have formed within the skin from recurrent infections, as when you get a recurrent lump it backtracts further under the skin which results in bad scarring.,so the process starts again when you have a flare up. when I referred to my experineces,as being bad its only because at the time no one medicaily new what I had at the time. the last operation was on my inner buttock near my groin area so it was painfull as I couldnt sit down or wear clothing in that area and was embrassing!!!!!!!. The op its self was a day case for surgery followed by district nurse coming every day to clean and dress area, it wasant packed as it has to heal from the inside out.daily bathing was a pleasure and relief.they also used a powder which speeded the process up.as I couldnt sit down it took 6 weeks to heal completley. the area they took away was 2 1/2 inches long by 1 1/2 inches and the scar dosent look to bad,Im contcious of this but thats a women thing.. your surgeon is right as a plastic surgeon is the only person who can deal.aderm specailist will only confirm your condition. and antibiotics only clear the infections you get them..As i have this condition for so long Ive been desperate for a cure,my key triggers for a bad attack is stress , I do smoke but smoking is blamed on all illness, and I have always questioned diet and bodies ammuntiy..IM looking at a few areas at present one is taking zinc and IVE taken great intrest in wheat and gluten free posts.Im trying a wheat and gluten diet at momment, but dont want to comment on that at present, lets just say my fingers are crossed at momment and im making notes.........................
God Im so glad ive got that of my chest , never opened up like this before and talked so freeley about the hs...John hope this will probably help you in some way,what ever dission you make about your surgery . All I can say it was right for me, I hope you get some feed back from others that will help you as well....Take care john and keep smiling.....from monkey

[johnboy]

Thanks for your good wishes and comments Monkey...

I had pretty much come to terms with the fact it was HS over The past week or two when I found it on the internet and realised it was what I thought I had. Think I have had it for a few years now and from what I have read and been told I think it is quite progressed, I have 2 ares now with 3 holes In Arch area constantly weeping, 3 areas of constant abscess's pretty much every month so maybe 2 or 3 new attacks a month right now. I also seem to be getting small one off boils / abscesses on my stomach which flare up to a peak and burst within 24 hrs but they are not a massive problem like the others but bloody painful and would not let me sleep the other night....they are frustrating because I consider them to be nothing compared to the others.

I have been pretty much OK this past week except for a minor on my stomach but I can feel and know I am having action in my left groin again....this is now the worst area for me.....hope it is over with quickly!!!

Are you saying the surgery for wide excision was only a day case?? I have read of people being hospital for weeks and some cases months, most of the info I can find on it is pretty old so maybe better options now. I have also read a lot of it not being very successful, it has been for you but do you know where to find other info about others success or failure with the surgery option? So little info it is a pain in the ass.....sorry...

I am definitely not looking at changing my diet too much right now and will leave the gluten / wheat free options for some time yet, enough to worry about I think so I will continue eating what makes me Happy for now. I am a smoker but have not had a single cigarette for 2 weeks now just cold turkey / willpower and it has worked up to now and pretty sure I will stay off them now......

So I shall keep researching and gathering info, when I see the surgeon I will be asking about the dermatologist role also as I do not wish to just have surgery without knowing of there are some other options I can try first.

Thanks again for your comments and keep them coming, it probably does you good to be able to help someone else with your experience and I appreciate it. Also there is not a lot of input on this forum but quite a lot of people read the posts so hopefully help others and maybe get them to perhaps share their experiences or thoughts....come on guys it may help you also to talk....

[25monkey]

hi john

if this is any use for you regarding surgery route,first had surgery in 1994 when plastic surgeons didnt have a diagonis for condition,hs started in breast first ,they didnt know what it was and how to treat.ended up having 11 operations over a period with 2 different hospitails..finail option removal of breast..became chronic 5 years later oct 2000 in second breast had 1 operation again severe results and removed breast. spent a lot of time in and out of hospitail drips in my ankles because my veins in arms were knackered with blood tests and antibiotic  drips....areas were always packed with bandage soaked in iodine ,but still got re current lumps and infections..
when in just under 3 yrs ago started again in groin area saw a different surgeon was opptamistic again explained to me that basicailly they devolope like a tree root under the skin and just back tract, causing more hs, when there dormant they show as a black spot under the skin like a sac that dries up under the skin and fill up when start again, which is why they now say excise the area and surrounding skin and they didnt pack it this time so there was no moisture or packing to keep infection there.yes my surgery route all them years ago was not a pleasant time in fact horrific.but last one was a good one so hopefully surgery thecnics are moving on..dont know what area your from but had my surgery at warrington. cant remmber the surgeons name.dont know if its possible to contact them for any info to help you and your research..also watched embrassing illness on television last night and a lady with hs was on it ..she was subscirbed antibiotics and they really helped her .they have a website for the programme..also you could watch it on tv reply to see what you think..............good luck monkey

[johnboy]

I will try and see that tv program.

Funnily enough I am only about 12 miles away from you in Maghull. The plastic surgeon I am seeing is Mr Alvi, there seems to be a lot written about him on the internet but nothing connecting him to HS but I believe he is at the top of his field so fingers crossed for when I get to see him. He is actually based in Whiston hospital I believe which is just around the corner form you really but I will see him in Ormskirk.

I really appreciate your input, your history sounds horrendous and what you have been through is awful. I feel lucky in some ways after I read others stories but I also know the pain I have had and how often it is re curring and you cannot help but worry about what the future holds with the HS. You sound really positive about your last surgery but you said earlier you now have so many lumps now, how are you doing right now? Do you have lumps in areas that have been excised? I have two really bad areas that will need sorting out quick I am sure, just above my pubic area and my left groin, I have read that the groin area is the most likely to suffer recurrence after wide excision, report I read said it was 37% which is a bummer.....

I would really like to also see a dermatologist, one with good experience of HS and see if any drugs will work to control or make the HS less frequent. I think I will need to Wait and see the surgeon first, I have been told I will the appointment in about a week...Hope it is not months away like m last one was, that is another problem, I waited for a couple of months for this surgeon to see me to refer me to the plastic surgeon, then if he refers me another wait....oh well I still better off than an awful lot of people.

Have a nice weekend and if i catch that program i will let you know.

John 

[25monkey]

hi john

the two hospitails I attended were warrington and whiston where I saw  DOCTOR Kumar who was the plastic surgeon who dealt with my first surgery, whiston that was back in 1995 the plactics department had just been built and was one of the first patiants in there but time has moved on since then and doctors move around, and procedures have probably changed as well...the lumps i have at the momment  are doing quite well,dont want to chance any think at the momment or jinx my self but have been on a wheat and gluten diet for 8 days just to see if it helps,also keeping a dairy for this,dont know if this is all in my head but,im actually pain free at momment the lumps  grouped together and are down to a size about 50p in size{each one] no swellings but i have noticed the skin has gone hard and has darkend, I can sit proberly and dont need my specail cushion[which i have to use a work] YOU CAN IMAGINE THE JOKES AND COMMENTS I GET...also more comfortable in the underwaer dept, dont know if the diet is working or IM just in a remission period which is due, but the hs  areas have never harden before or darkenen in colour, so will just have to see..never had a lump returned in any of the excised areas john. another tip I use if you can bear it ...exfoilaiting gloves and salt baths[EPSOM SALTS] Ifind baths when im bad a releif with hot flannels in the area, after about 5 / 10 mins I exfoilate the area in groin no soap or body washes..it helps to remove any build up of dead skin..I dont shave area in groin at all but keep area short in hair dept,I hope this isint to personnel for you asy ou suffer in that area ...i never dry with a towel in that area as well...dont laugh but a use hairdryer on a cool setting to make sure completley dry so not got moisture build up to add to problem......John you sound as though your having a rough time with the groin area..if your feeling brave have you ever asked youre gp to lance the area for releif or is it beyond that now..Hope your appt dosent take to long to come through and you get some releif from the pain and disscomfort..you sound like there a nigtmare at the momment..try keep smiling but when youre having a bad time I know its hard with the hs pepole dont realise how painfull and depressing it is and its not the sort of thing you can just talk about freeley with pepole..you seemed to be prety  clued up on your info, I wouldnt know where to look Im just glad for the forum after the last 15 yrs in silence...you said in one of youre earlier posts your in the medical area of work surpose that is a help to you, for your info..Dont want to put a dampner on your own problems john but the diet at the momment IM in a really happy place at the momment being pain free and comfortable   really hope it lasts and its not all in my head and Im moving forward.
hope your wait isint to far away and you get sorted soon     keep smiling john   .........monkey

[johnboy]

Thanks again monkey, we will keep this HS board going.....

I am glad your diet seems to be working for now, I am not ready for that just yet need to keep myself a little happy right now.

Not too good today, I have an awful lot of pus leaking from my groin, I keep cleaning it but it is not stopping today. It is so sore and I am just sitting as wide legged as possible with nothing on.....sorry ladies not a very nice sight / thought I know. Frustrating thing is there is just nothing I can do, I could try my gp tomorrow but what can he do? Nothing. I can go to the walk in clinic but what can they do? Nothing. Snookered, just have to put up with the horrid smell and pain with it, lumps gone hard and growing on my scrotum also on the same side, small head developed today and I expect it to be a golf ball tomorrow / tuesday and a baseball by thursday...great week ahead.

I have never had any abscesses lanced...I have been to the walk in clinic twice with them in the past and they did nothing each time, sent me home and was told to use hot cloths etc I asked about lancing and they said no it has to run its natural course and they do not lance them. I suppose it depends who you see and what they think, all nurses are different and have different views and ideas. To be honest the lancing would not worry me but once they get towards their peak I know it is awful but I know if I keep them hot they will go over the next 24 hrs, I just get myself as comfortable as possible and wait for it.

I am linked as an ancillary medical person, nothing attached to anything that can help with HS. I help others with totally different problems with their hearing as I am an audiologist but it helps as I know quite a few people who work in hospital etc to pick brains but not very good info to be had anywhere....

It is now some time since I worked to be honest and I do not see when I will be returning to work, that makes me feel awful but as soon as I wear "normal" clothes a couple of hours I am in agony for days. I just cannot wear trousers at all, I wear a thobe or dressing gown at home and if I go out I wear very baggy shorts or baggy tracksuit bottoms but still no help. Same when i drive much, the area above my pubic area is really bad and there is a small fold under my stomach where this is just a breeding ground for HS and it kicks off if I wear normal clothes or drive too much. So pretty much slouching around a lot for comfort at home. I read others stories and think I am not that bad but it seems when you think about it and write it down that my situation is pretty desperate right now as I have been like this for pretty much 6 months now and it only gets worse......the implications are pretty grim really and it needs sorting sharpish......

Monkey, I assume you get on ok with work now but what about at your worse moments how did you cope? Did you have to much time away from work? I reckon right now I am pretty consistent that I am ok ish for 2 weeks and in quite a lot of pain for 2 weeks and I think maybe i should be working 2 weeks each month but I know i cannot, I know i cannot wear normal clothes, i cannot drive for long, i cannot sit up straight for too long....without it causing me trouble later or next day but I have always worked and it just does not feel right. That is probably my biggest problem in my head right now...WORK!!! Or lack of it.

I like the idea of the hairdryer for my groin, (purely for cleanliness, lol... that doesn't sound right) I have not even thought of it but will do so tomorrow, I have been using pads and other things to try and dab myself dry but I realise as soon as you say it that the hairdryer is a much better solution. Well I shall keep reading the info on the net and cross my fingers appointment comes through soon for the plastic surgeon...

I am keeping my chin up but you know the worst thing about this disease for me right now and what I face this week....bloody daytime TV, all the moaning and whining on Jeremy Kyle, thought it was funny at first but not any more.....hahahah I had to finish on a high note...

Keep my fingers crossed for you monkey, have a good week in work.

[25monkey]

hi john
sounds as they you really are having a **** ( Ed Bot!   ) time at the momment,I understand the problems you are having at the momment there bad. I call them my silent days, after 15 yrs of hs I know how you feel..The pain in its self his enough. uncomfortable, depressing, self morale..I wouldnt go out, socalise always made excuses as I couldnt sit for long and was concious of the odour from hs..just happy to plod along at home....pain killers....and more pain killers..you feel like **** ( Ed Bot!   ) all the time{sorry for swearing}..started taking co-codamel on prescription not a good idea at the time..but I dont take them now.
when you have hs as bad as you have at the momment your tired ,grumpy..lifes not fair..you think with all the tec at the momment in medicine, surley someone would have the answers we need a treatment for us or even a cure..wishful thinking!..
I found plenty of baths a great relief and hot flaneels a hot as you can tolerate to speed the process up so the lumps come to a head quicker..Ive even got that desperate at times Ive lanced them my self just for instant pain releif..and I know when im going to get new ones as it starts as a dull ache in the area

I have been at the stage youre at now about 6 wks ago, I just had another 2 weeks of work going back on wednesday..as it was bad my doctors quite understanding but i wont let her put hs on my sicknote as no questions can be asked at work, I have in the past had to have quite a bit of time of work, and lost my last job at bt through this. been with my present company nearly a year now but have had 6 wks off so far due to hs, so dont know wether they will renew my contract in january...
thats the thing with hs it not only effects your body but your life style , jobs, freindships, and quality of life ..
so back to my desk on wednesday and my faithfull cushion..you want to ask about one from your gp john there brill takes the pressure of areas..I have a posh one for work I got that one from ebay from a medicail section/shop and the one at home is a nhs one...
take each day as it comes john I hope you feel better soon and you get some releif and your appt hurrys up...
dont be watching jemery kyle john far to depressing..............watch loose woman at dinner time more fun..................look after yourself john  take care monkey

[25monkey]

hi john
just posted a message to you and in shock as i have some bolts on there .think i might have used a swear word that cant be shown. tut tut naughty me ......it was only 4 letters beginig with s!!!! my mistake sorry!!!! I hold my hands up   take care monkey...........

[johnboy]

Four letters beginning with S.....that is how today has been unfortunately...

Lots of weeping last night and I mean lots from 3 holes in the left groin, even more today so decided tonight I need to go and see a nurse or someone and have them just check it. The odour is stronger than ever, the colour is stronger it just seems that bit worse  than before. leave home at 7.30 and get to the walk in clinic just after 8pm and they are closed, they finish at 8pm and I thought it was 10....so off to A&E as it just does not seem right, too much pus today....just spent 4 hours at A&E I had to write Hydrants suppurating out twice because they could not spell it or know what it was. I wait for almost 3 hrs before being called through, I see a very nice young lady doctor, looked about 16 but obviously a little older...she was very very very nice but didn't;t have a clue what it was, never heard of hs and doesn't really know to do or say. She knows it is bad but she is unsure so she goes to see her superior...comes back after speaking to a senior dr (she did say she was getting him to back and look at me) he says if it is similar to what you have had before we will take a swab and send you away and check with your gp next week, if it is worse than you have had before then we will take a swab, give you antibiotics and send you away to see your gp in a week....the senior dr didn't come to see me, probably didn't know what hs was.

So I am home now, I have a 10 day course of antibiotics 500mg 4 times a day of erythromycin, never had them before but told them I have had amox and flucxo in the past month so they gave me these. I also told them I have had been dieting on antibiotics over the past year to no avail....they have no other answer!!!!!!!!!!

They say good luck and we hope you get your appointment through pretty soon with the specialist....THANKS....

I keep my head up, I know there is no point getting too down and letting it get to you more andmore but what are you supposed to do, I have seen my gp a surgeon, a nurse and this dr tonight all in the last week......every single one just passes it on to another..they are scared of it......

So I will just spend the rest of the week wide legged, watching daytime four letter s words on the tv and researching over and over on the internet like before and wait for my appointment with the saviour....at least I hope he is.

Good luck in work monkey, I wish I was going back to work. I don't have a cushion but don't think I need one, all I need to do is keep my legs wide open all day long....very dignified I must say...

Wow now I am amused I think or I am peed off...I have never written HS out on this forum before but just use HS for short like everyone else but wrote it out above and when I check the spell checker it is does not recognise Hidradenitis or suppurativa NOW THERE IS A SURPRISE HS NOT RECOGNISED.......

[johnboy]

I had to write Hydrants suppurating out twice because they could not spell it or know what it was.

Sorry just noticed my error, I inadvertantly let the spell checker CORRECT Hidradenitis Suppurativa and it come sout as Hydrants Suppurating....sounds equally as bad...lol...

[25monkey]

hi john.
how are you today, not so good by the sound of things..sorry to hear you had a bad time at a&e yesterday....They have no idea do they there hopeless when it comes to hs ..The fact you had to go in the first place is harrowing enough ,then to to explain and justify why your there .the pain and discomfort must of been bad for you to have to gone yesterday.. how are you today john!......
Ive seen your photo and looks painful................ooouuuuuuuuuuuuucccccccccccchhhhhhhhhhhhhhhhhh...
IM no expert john but that looks advanced hs in that area ...looks very simmalir to my 1995 experience in hs state, looks as though its created a fitsulla,the edges are smooth and very circular which are signs of age and length of time you have had it..fitsullas are caused through current infections in the same area and causes the hole to back tract.basicaily enters in one area and comes out in another area like making a tunnel under the skin,if i not explined very you can look it up, for fitsullias hope my spelling correct. also ask for tetralysal which is a antibiotic for severe acne but also has a antibiotic which will clear any infections at present in the skin.this has been prescribed by my gp while im waiting for a appt for a dermotologist....dont know if there going to be any help or give me any info none have up to know........
work was ok today but really tired being first day back, had to have a return to work for being off again as its my 6 time this year with hs.....took the bull by the horns and explained my condition and what it is and how it effects me...met by stunned silence no one new what to say, feel like a leper today ....but now they know..have to see what they do now..and how they go forward with it..also asked if they would keep confidential info given because of the embrassment........my manager was alright about it .and thinks ill get a letter for a verbal warning about my abscence...not only am I cursed with hs but cursed with jobs as they dont want to know if yore ill...
enough of my moaning tomorrows another day..

hope your feeling a bit better john,and trying to get some comfort which i know is not easy,try and keep your chin up..hows the day time television going....speak soon monkey

[johnboy]

Thanks monkey

I am not feeling too bad today "down there" the antibiotics may have helped or it may be a coincidence but it is easier today. The anti biotics make me feel like s**t though and I feel ill right through my stomach and have cramps I think in my back or at least that is where they seem but you know it may be my stomach...but I that is all a relief compared to the pain I have been suffering.

I think you are right about my HS being at an advanced stage now in that area. I have three areas of attack this is the worse and now alongside this is a "new" area which had abscesses for the first time in my scrotum a couple of weeks ago that where enormous and i mentioned earlier. I am assuming they are derivative of this area where the pic is as alongside so as if it is spreading underneath which is the characteristic of advanced HS as I read it.

The other two areas are not quite as bad, one pretty much leaks a couple of times a month and I get small abscesses (they used to be large but now have 2 "holes" like the 3 in the pic) and the third area of attack is still just getting large abscesses up to baseball size and they come in 5's one behind the other and when that kicks off it has a cycle of about 7 to 10 days 1 coming and peaking and bursting then the next one kicks in and so on....this is pretty much how the area pictured started off but once the holes appeared after numerous abscesses it just leaks and gets small abscesses obviously because they are constantly draining through the open sores. Although I no longer the enormous abscesses there the pain is still terrific and difficult to clean as you can probably imagine it is severely painful to touch with anything.

So just have to play the waiting game for longer for my surgeon appointment.

I have not worked for some time now and I am worried that when I am able to I will be in a similar position to yourself and others and find it difficult to work permanently and may quite a lot of time off sick. The thought of getting a warning for having HS must be awful for you, what are you supposed to do?

The amount of people who suffer with HS must now make it a viable business solution for the big companies like Astra Zenica etc to research and find a cure or good consistent treatment for it. You read in most sources now that it affects 1% of the population and that is a hell of a lot of people.....

Fingers crossed

[johnboy]

I have now got my appointment through o see the plastic surgeon on 21st december....seems far away but no doubt with the xmas period coming up time will go quickly.

Visited my doc again friday and suggested to him about seeing a dermatologist, as I still have not seen one. Doc says there is no point they can't help you need surgery.....why is it everyone else sees a derm? I am not sure whether I want to have loads of surgery, I can see 2 places that I will have to have it now and there is 2 other places I have problems but right now they are not as bad but they are getting worse. I just don't think I want to go for surgery, then again in 6 months for another area and so on. Some people get theirs under control with drugs from the derm so why not try it, me thinks???

I think I just need to see someone, anyone who knows more about this horrid disease. Maybe the plastic surgeon will know more and offer different advice as well as surgery.

We'll see.

[Celery Peach]

Check your Inbox John 

You definately need that derm referral. Personally, I dont rate surgery for HS, its rarely effective. Please try all other resources first, there is quite a list of options any derm could give you before resorting to butchery