Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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/ Hidradenitis Suppurativa Support Group

Introduction

Emmy_Kay146
Emmy_Kay146

Hello. I am new to this entire blog spot. I wanted to introduce myself. My name is Emily, and I have been suffering with HS since I was 13 years old ( the year I started my menstrua cycle). I'm 26 now and I have no clue what I'm dealing with. My HS was diagnosed about 2 years ago. My doctors tell me that it hasnt gotten terrible yet. They are located right on my bikini line, so not only can I wear underwear, but it prevents me from walking at times as well. They only thing that soothes them is epsom salt bath. However the second I get out of the bath my HS will start to hurt all over again. The top 3 things that trigger my HS the most are stress, weight gain, and niccotine  I used to smoke cigarettes, but im 5 years clean of niccotine). I have joined this group to look for some answers from people who have experienced it themselves, and not just some doctor who are only reading statistics ( my doctor is wonderful btw ). I also joined to gain some support during the hard times when the flare ups come around, and to pissibly gain great connections with some of you. 


I do have one queation though: Has anybody survived and "cured" this skin disease ( is that what it is? Lol ). I am trying to get rid of this, for good! Looking forward to reading responses. 


Always with love,


Em

Mrsbrown
Mrsbrown
Sorry hunny its no cure i just learned its stages to hs im in stage 3 you might wanna talk to your doctor about putting you on anitbotic for the flare up what state are you in
Emmy_Kay146
Emmy_Kay146
@Mrsbrown I guess I'm in the begining stages... I have a couple tunnels but not alot I just get the open sores a lot that sting whenever something touches it or whenever I move my leg. My ( derma ) doctor put me on this solution called Clindamycin phosphate topical solution.. I guess it works like hydrogen peroxide?? It helps a little and then I use a acne wash, but that is over the counter. I dont believe that helps as much as the topical solution. What are the steps in getting to the "tolerable" stages? I'm just embarrassed when I have flare ups. My boyfriend knows about it but has never seem them. I just get really uncomfortable and sometimes it hurts too much to engage in any sexual activities.
mackaroo1999
mackaroo1999
It didn't cure it by any means, but witch hazel helps it at least feel a little better - at least for me. But mine's only in my armpits. Also ibuprofen.
mackaroo1999
mackaroo1999
This might also be a longshot and I haven't tried it yet, but this summer I was in Wisconsin and got about 20 mosquito bites on my ankles, and the itching and burning was comparable to what I'm experiencing with the HS! Ice and cold water helped, but at one point it got really bad and I crushed up a bunch of ibuprofen and made a paste out of it that made it feel soooo much better. I'm thinking that might help at least a little? Take down some swelling and some of the itching and pain?
Emmy_Kay146
Emmy_Kay146
Mackaroo1999 I thank you for your suggestions. I will try anything and everything until i find something that I can tame this craziness with.
wforwumbo
wforwumbo
There may not be a cure but theres definitely a way to make it slow down or completely go away for a short while. Like you said stress, weight and nicotine is what doctors always advise. Type of food too as I've heard some HS sufferers feel their condition is worsened by certain foods and definitely junk foods. Um finding a skin-care regime that'll work for you as everyone is different. I'm regularly exfoliating and using gradual tan moisturiser as I wanna get rid of these scars and get on the damn beach. Anyway exfoliating and moisturising is good for scars because it helps turn over the top layer of skin faster, but be gentle with exfoliation or skin gets worse and don't exfoliate active HS marks. But moisturising while they're active has helped make them scar far less than previously.

Honestly theres no quick fix if you want some change in you HS status you need to add a few things into your lifestyle to manage it. And I hope one of these things and this forum can really help you out!
Emmy_Kay146
Emmy_Kay146
Wforwumbo thank you for your reaponse. I will try anything. Do you know that type of trigger foods for HS or does it depend on the individual? I see my doctor Dec. 7thso hopefully she'll be able to help me more with a game plan.
wforwumbo
wforwumbo
A lot of people say nightshades but personally none of these are a huge factor for me. I try to eat well and not eat too much sugar, processed grains, meats, cheese and the likes and have seen a lot of weight loss which has in turn seen improvement in my HS. Sounds like a lot of change haha but to be honest after a while you just enjoy eating that way. And if you wanna eat a certain something screw it eat the thing, life's short.

But yeah I would say it does depend on the individual :)
All the best with your doc appt. Write everything you wanna ask down! I always forget everything as soon as I walk through the door haha don't be like me
Emmy_Kay146
Emmy_Kay146
I got my list for my doctor. Ugh the Lord only knows that we just want a end to this crap. Is this genetic? Does anybody know? I would cry everyday to if I know I gave this skin disease to my future children. Also, whats nightshades?
Mrsbrown
Mrsbrown
Hey emmy what state you in thos what i learn from hs and what helps me i dont know if its gonna help you or not hopefully it will im on antibiotics called keflex by mouth and nytan cream and powder i take nerve pills it help relax but also put me to sleep i am on some real heavy pain meds so can ask the doctor for something stronger like oxycodone but in the mean time you can go to a store and buy naproxen advil and aleave and ask your doctor for fluid pills it keep the swelling down and dail soap all this stuff i named it work for me on top of my other medicine it keeps my flare up under control my swelling down just enough calm the nerves down if you are depressed talk to your doctor to talk some depression meds i dont listen to everything the doctor or someone tell me to do or take i look it up first
wforwumbo
wforwumbo
Hey Emily, many say it is genetic but in my family I don't know of anyone that has it :)
I know my brother and my mother will get the odd boil once every few years but literally thats as far as I know of my personal genetic disposition towards this condition.

Life's a roll of the dice, try not to worry about the future. Pick one of the tips from this thread and try it out because that's something you can work on now that benefits you right now. Something I've learned is that thinking to deeply about the distant future is that it distracts too much from living for the now :)
Sadmissy
Sadmissy
Oh I have tips Kik me at sadmissy we can chat and share tips going through it!!
Emmy_Kay146
Emmy_Kay146
Thank you all for reposting

Sadmissy: I do not have a kik is there another way to reach out to you?

Mrs. Brown: im going to be completely honest and say ai cannot tale medicatipn lile antidepressant or oxycodone... I have PTSD with those particular medications. However I thank you for taking the time to respond. I will try that advil though see what that takes me.
Wumbo: I find that interesting.. my twin sister is the same as your mother and brother. Do you have kids? If so do they show signs.?

Again thanks for your responses, love and
support
wforwumbo
wforwumbo
I don't have kids sorry x
Emmy_Kay146
Emmy_Kay146
Wumbo its okay, neither do I.