Hidradenitis Suppurativa Support Group

Good afternoon, all -

I'd like to take this time to introduce myself. My name is April. I am a 33 yr old married mother of 2 from the great state of South Carolina, where the summers are always HOT and it's always HUMID....two things that I know contribute to HS.

I've never been formally diagnosed with this horrific ailment, however, I have been self diagnosed for about 2 years now. I've been to two 3 different GP's, 2 different OBGYN's, and 6...yes...I said SIX...different dermatologists from Florence, where I currently reside, to Myrtle Beach, Charleston, and Sumter. I have an appointment scheduled with a dr from the Columbia skin clinic on June 12th, who I am hoping will finally give me a proper diagnosis. I have done a lot of research on the net and honestly believe that HS is what I have.

My lesions started when I was about 16, so I've been battling this for about 17 years now. I can't remember exactly what my first one was like, however, it has gotten increasingly worse over the last 10 years or so. I think the first one I got was on my inner thigh. I don't remember a time since the age of 25 that I've been "flare free" so to speak. Right now I am currently battling a total of 16 flares that are located on my thighs, groin, vaginal area, buttocks, under and on the sides of my breasts, along my waist, and under my arms. I often refer to my lesions as "land mines" because at any given time, under any circumstance, they can (and will) explode. YUCK! At times, I think I look like a walking band-aid commercial. Not a day goes by that I don't have to bandage one of them.

I've been on various different medications from antibiotics to chemotherapy drugs, namely doxycycline, tetracycline, bactrim, methotrexate, predisone, different birth control pills, and several different antibiotic creams and ointments, all with no effectivity. I've never had a doctor that would even explore the possibility of using lasers to try to treat these things. I've also used over the counter products such as epson salt in baths, always use antibacterial soap, some kind of special deodorant, boil ease, heating pads, etc. Nothing has helped!

It is very nice to know that there are other people who suffer from this monster! At least I know that I am not alone in this, and that others actually want to read my story.

Sorry for this LONG introduction.

Welcome to the group Alr311 I know what you are talking about with the hot and humid south for i live in Mississippi and it humid here most of the year if there is anything that I can help you with or you just need some one to talk to just let know

Thanks for your reply srg43. This is tough stuff to handle, but I'm a pretty tough cookie, like most of us are I'm sure.

yes we are all tough here and we have the scars to prove it!!!! LOL

Hello April & welcome to our little family! I can understand your frustration with not getting a correct diagnosis, because I went through 15 different doctors telling me it was boils, absesses, furnuncles and that I was just simply "unclean" in the area's until I finally had a doctor tell me exactly what I had. It was a relief to have a name to place with this disease, but it was also heartbreaking to understand that there is no cure.

I LOVE that you refer to the bumps as "land mines" because that is exactly what they are! Some of us like to refer to them as "aliens" because they are foreign entities invading our bodies without permission!

I can also sympathize with the heat & humidity of the south because I am from Oklahoma! My biggest assistance that I have found is carrying around ice packs to place on my HS in the hot summer months. I suffer on both sides of my groin & on my buttocks... so even though it's slightly embarassing to have wet spots from the ice packs melting- it's WAY better than having stains from a ruptured/leaking lesion.

Again, I am so pleased that you have found us here & let us know if you have any questions. Most of us are veteran's here & we have tried it all! Some of us have found some temporary relief with homeopathic items/medicine's, like TTO (Tea Tree Oil) Hand Sanitizer, Aloe Vera Liquid, Hot Packs/ Ice Packs, etc.

I hope to hear from you again soon! <3 Candace

Thanks for your reply Candace! I can definitely tell already that this group is much like it's own little family, and for that, I am grateful. I am very interested to find out more about everyone and hear about their issues as well.

Hello April! Welcome to the 'family' Yes, we are more like a little family than anything, with the added plus of no family drama!

I hope you will get as much out of the group as I do and have for several years.

Don't hesitate to ask questions and also to offer suggestions. We all have something to offer from our experiences, be they good or bad.

I am the Gramma of the group and my young cohorts...ermm, co-leaders do a good job and are really savvy on finding out most anything you need to know. But I am here too, to listen and offer support/wisdom?/caring, as do our wonderful members. <3

Karen

Post edited by: oregonnative, at: 05/23/2012 03:48 PM

sooo......Dr Zimmerman (new derm) diagnosed me with HS at FIRST GLANCE!!!! I've known it for years, and it feels good (in a crazy way I guess) to know that I have finally been diagnosed. She said that I'm definitely stage 3 because of all of the tunneling in my groin area, and that since the creams/oral antibiotics haven't worked in the past, she wanted to consider starting me on Accutane. She said it has helped about half of her HS patients, but said my only other option was surgery. YIKES!!! I'm not sure which I'm more afraid of...Accutane or Surgery! PLEASE PLEASE weigh in on your experiences with both. I need HELP!

Please read up on accutane there are many side effect with this drug that are going to happen like the drying out of your skin nose bleeds and dry cracked lips these are a given not to list all the other one but I guess all meds have side effects. My derm want me to go on this drug and after I done my research and talked to many people that have taken this drug and it failed to help them long term or even at all I told my derm no that there is to much risk with little reward. I have been reading where Humira is helping alot of people with HS there are alot more people with good results with this than accutane. and yes there are side effects to this drug but in my oppion the risk here may be worth the reward. So now my last vist last Tuesday I ask my derm about Humira and he done some calling around to other derms and got there input and now he is tring to get me approved this drug is in clinical trials for HS so you have to get approved before your insurance will pay and it is very very Expensive but if you get approved the drug company will help you by giving you a copay card where it will only cost you $5 I have already got mine in the mail. So please do your home work on accutane and humira you don't have to take it just because the doctor wants you to it is your body. If you want to know more send me a message and we can talk.

Welcome April, you are not alone!!!