Hidradenitis Suppurativa Support Group

Hello

My name is Jodey and I've been on this site for a little while but haven't introduced myself. I'm 23 years old and I'm from Australia. Have had HS since I was 11 and was diagnosed when I was 18. I'm now in stage 3 and I've tried a lot of meds as I'm sure everyone else has. I'm on roaccutane at the moment and at first it worked really well ( oh and on the slight acne I had but I didn't really care about that but it was a nice bonus ) Thinking of going off it because it's doing nothing now and the doctors(even though they seem hesitant) want me to consider surgery but I've heard good and bad and wanted to see if this group had anyone who's had surgery and what type etc. I have HS in all the usual spots and mine seems to be genetic through my dads side though they all seem to only get one very bad sore a year. I'm studying to be a childhood educator(new name for child carer in Australia). I've put it off for years because it's quite a physical role but I've decided I'm going to work through the pain and achieve it so I can achieve my others goals of traveling overseas to be a nanny/au pair in the UK. Mind over matter on most days but I get the occasional bad day like everyone else and if anyone ever needs to talk I'm all ears no idea what else to write lol I've never written an introduction before. Hope everyone is feeling fantasmagorical(my word for good ) take care.

Hey Welcome Jodey, not too many Aussies on here, where abouts are you from?

I live in Perth WA.

Hi Jodey and welcome to the group! Glad you decided to join the goings on.

There are several here who have had one type of surgery or another. Maybe you have read about some in our posts? If not there are many discussions which are kept in the forums.

Just click on Forums at the top of any page, an then click on the dot by Medicing and Treatment, or the general forum and just type a keywork in the search box at the top rt. for what you want to see.

If you have any questions for any of the members you can send a personal message to any of us.

I have had surgery, many years ago an it is something I would do again. There is no cure, but it did give me a few wonderful years of being able to do the things I love without so much pain and all that goes with it. I have lately been in a bad flare and now need surgery again. If medicare paid for it, I would do it in a flash. Just make sure if you do, that it is by a dermatologist or a surgeon who is well versed in HS and it's special needs.

Again, welcome and hope you enjoy our little group as much as I do.

Karen

Welcome Jodey, How is the weather down under? We are having a heat wave where I live in Las Vegas, record temps 113 - 115 depending on where you are at in the city lol. I havn't heard any good things about acutane - but I have heard good things about surgery if you get the right surgeon. Glad you joined our group.

Gwenda

Welcome to our little family Jodey!

I have yet to have surgery personally, so I cannot answer any questions in that department, but I would love to help stear you away from the (Ro)Accutane! We are not big fans of the medicine & there is actually an article under the "Articles" tab that is specifically about it. I know that Cal was taking it for sometime recently & I am hoping that he has discontinued it's use as well. Most HS'ers who have tried the drug, state that it does nothing for their HS (and yes, it probably does help acne because that is specifically what the medicine is used for & HS is NOT acne) but they experience the horrible side effects associated with (Ro)Accutane.

Regardless, we are so happy that you are here & found us! Ask away with any questions that you may have for us: we are not modest here! <3 Candace

I've had the "apocrine layer" removed from both armpits. I still have flares on the edges of where the surgeries were, but my flares there have GREATLY reduced. I was lucky enough that our local general surgeons were familiar with the procedure and i did not have to travel to get care. I wish you well, and feel free to message with questions. Like Can said...we are not modest...after all the "parts" we've had to show the drs...who could be? lol

Ha Freak- exactly! What I think is hilarious with my personal situation is that I was always more comfortable showing off my groin area to the 15 different doctors I saw, before I was correctly diagnosed, than I was to show my bare bum! I guess it's because I can "see" my groin, so I knew what I was about to be exposing them to & with my bum, well I cannot see that so IDK what they were technically looking at! Ha! <3 Candace

Candace, you are incorrigible! LOL Incorrigably hilarious!!!! But you speak the truth, just like Freak did.

Thanks for all the welcomes sorry I haven't replied, I haven't had any Internet and I've been very busy with assignments in school. Parrafan I'm from Brisbane, Queensland but I'm studying up north in Bundaberg. The weathers abit cold but thank goodness it will be spring soon. I've stopped the roaccutane since I last posted. I never had any side effects except for dry skin in winter and at the time i was taking it, it did seem that I had less sores. I seem to be healing faster now but I have double the amount of sores but who knows if it's correlated. Anyway sorry it's a quick note but I have to get back to my assignments. Hope everyone is well

Jodey- thanks for checking in with us! So what are you studying? It's funny that you are wanting it to hurry up & be spring- I am crying for it to be fall! We have had a record heat for summer here in the USA & I (probably speak for many when I say) cannot wait for the rain & snow! "Hoodie-beanie-sweater-weather" is what I like to call it. Plus my baby girl will be here by then, so I see a lot of great things happening this year. I am so glad to hear that you stopped the Roaccutane! But I am sad to hear that you are experiencing new flare-up's... that is always a bummer! I am hoping that since you are healing faster, perhaps those ugly buggers will leave you alone asap. Well I hope to hear from you again soon (maybe not too soon while you are busy with classes!) <3 Candace