bad experience with consultant

i had the exact experiance as you many years ago with a plastic surgeon, he said he would not operate because i was to fat and i needed to to lose weight first at which point i was very swift to point out that the reason most of HS sufferers were overweight is because we are in too much pain to excercise so weight will always be an issue.

Now though i,m not a believer in surgery because my past experience shows that you repair one place and it will break out somewhere else,i swear by my new trearment ADALIMUMAB if you can get the hospital funding ROACCUTANE is brilliant for acne but after having 2 different courses in the past it does not touch HS.

good luck with whatever you try.

The surgeon i was referred to also was quite arrogant and rude. maybe its a surgeon thing. He came in and took one look and said yes its HS if you smoke it makes it worse, i will remove it but it probably will come bak and you will get an infection in that area anyway. anyway i think it was a different surgeon who removed it and thankfully the open would healed with no infection and hasnt returned in that area as yet. (1 year). I havnt had any support from the medical profession. various HS support groups have been the most beneficial. patients with HS sharing their own experiences are helping each otherand giving beneficial advice rather than the doctors which seem happy to let us rot.

i am very lucky that i have the most wonderful surgeons, drs and dermotologist, i have had millions of surgeries and am havin another on the 5th oct, i have hundreds of scars but i would rather have them than the abcesses!

the surgeries are painful and can take months to heal especially if they are open wounds of which ive had many but i would recommend surgery, it does come back in different areas but not as bad, my advice would be to ask to see another surgeon, there are some good ones you've just been unlucky, this condition is debilitating enough we dont need the negativity of drs who cant be bothered so please ask to see another surgeon i hope everything goes ok for u xxxxxx

Just wanted to say thanks for the replies, I'm still trying to decide wether to go ahead with the surgery or not - if I have it and it doesn't heal can the surgeon then say \"tough, you were warned\" or will they try to fix it? I will speak to the dermatologist next week and see what he is saying to it.

i felt like that too about getting the surgery done as this was my first and only (as yet). its the chance you have to take. i just thought either way i will have a would and infection (even though swab of lesion was negative) so i may as well take the chance on removing it. and it worked. i do have it in another area but whos to say that wudnt of happened anyway. i think its just how the disease works.

My experience with a vist to see a plastic surgeon was different. The outcome and advie was very similar ie the success rate was poor and he did not really want to do it but he was very helpful and very understanding. His big problem with it ws the recovery, I have to have both groins done and he has to remove a large area in each and thinks that recovery will definately be long (upto 1 year) and the success he said was around 50%.

His advice was for me to go and exhaust all medical solutions before making a decision in a year or so.....this was last december. My dermatolgy appointmensts have in my opinion been useless and I have seen 4 different dermatologists. My GP does not think the wide excision surgery is a good idea due to the success rate, she is of the opinion that I would be going into an unknown area regarding recovery and I am facing the prospect of putting up with what I have and dealing with it the best I can.

Incidentally the the plastic surgeon had an asistant who first mentioned smoking, I stopped as soon as I found out it was HS and and it has only gone worse over time. The next thing was weight, I have to lose some weight. I have put on more weight in the last 18 months DUE to the HS, I cannot exercise, I am severely depressed and do sometimes comfort eat....but the HS was there before the weight was added!!!!!! I know that if I do lose weight it is possible the HS may not be as bad but it will not go away because of it and may just keep getting worse....I hate more than anything that medical professionals use smoking and weight as the problem for everything.

So I am probably not going ahead with the wide excision surgery even if it is eventually offered.

Good luck

Having had HS for nearly 15 years, it makes me so angry to hear how the doctors and surgeons are treating sufferers. I am currently taking my second course of clindamicin and rifampicin to treat the condition which affects my groin area severely. I'm at my wits end as I feel i will never be free of this condition, I had a remission last year for 4 months and its come back with a vengence!! I am normal weight but I do smoke, so what are the doctors talking about, from what i have read the doctors are just guessing what actually causes this condition as they do not know, leaving us sufferers being treated like lepers!! I wonder how the surgeons treating us sufferers would feel if they had to endure the constant pain and debilitating feeling we have when we are suffering a flare up, perhaps that would be a good question to throw at them next time they are getting on their high horse!! I want this condition to be gone for good but the chances of that happening with all the medical flipancy seems unlikely!! Good luck to everyone and I hope that you all find something that works for you, even if for a little while!! xxx

I have just read your experience and i to am at my wits end i have suffered this horrible painful disease for many years now starting witgh just one abcess on my inner thigh. I went to my local gp who gave me antibiotics and some sort of cream....these didnt work.So a good few years on now i have multiple sites on my inner thighs and groin area, luckily i dont have any anywhere else at the moment.

I was addmitted into hospital 2 months ago and this is when a doctor left a leaflet at the side of my bed telling me I had a condition known as hs nice way to break it to me. i was scheduled to go for surgery then to drain the main site but this surgery was cancelled as they wanted to refer my to a dermotologist who has since then lost ,my referal twice! Apparently i have a large area to be excised but im now wondering should i really trust someone who cant even be bothered to keep track of their referals!!! bit of an insult to the people who are getting progressivlly worse with the condition and infection that it cause within our bodies!

but i will get the surgery done maybe not by him but its the only way forward to give me some sense of a painless life eventually.

I thought it was just my doctors that totally misunderstand the condition so in a way its hard too hear that it is indeed most doctors.