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,...
Good morning! My short history. It all started maybe 5 years ago under my armpits (one and then the other - initially I had just thought it was my bra irratating me - guess not) and then has since spread to my inner thigh area and under my stomach (a litte) and butt checks (a little) and under breast (a little). The absolute worst area though is inner thigh. It completely sucks. I went to see a doc about a year ago (when I was mostly still just worried about my under arms).
Doc recommended:
- A long term course of antibiotics. First set of antibiotics were horrible. Made me very ill, hungry and grumpy/mean. And I think even was turning my skin a greyish color. It wasn't good. Second set of antibiotics was an amoxicillian and I'm not sure that helped at all. Perhaps things would have progressed more had I not been on it?
- Hibiclens soap at every shower. Leave it on for 5 minutes then wash off. I have been doing this.
- Two differnt topical antibiotics - one and then the other - first for an antibiotic roller-aplicator thing and then later for an antibiotic gel. I am just now running out of the gel but I had been using it even thought it is super expensive about $70 a month or more depending on how much I use.
- That I use apovodine-iodine solution (that gross surgical yelllow stuff) on it at night but I found this was very sicky and I couldn't sleep using it so i stopped. I did try for a couple weeks though.
Other then that, doc said don't cover the wound (but when I did not cover it, bad stuff oozed ovder my undies). And her other suggestion was to lose weight.
In my opinion, it doesn't seem like any of the above makes a differnce - stuff has absolutely gotten worse but maybe the progression as slowed more then it would have otherwise. I just dont know. It is hard to tell. But now its hard to sit sometimes between the inner thigh stuff and the butt issues. Very dibilitating. Recently I've been going a bit rouge from what the doc suggested - and I skipped my last appointment - because it did not seem like her suggestions help. LIm considering a new doctor but not sure where to look. For now, I'm looking to the internet for advice. Not sure if that is the smart thing but there you go.
Anyhow I am left with lots of open questions. I found this forum while searching today and was hoping that you all could help. Please please.
Do other people use hibiclens? Have any of you found it too strong? Could it be causing the issue to worsen? Is there another soap you use and like?
I started putting bandages on my wounds, one 4X4 opened up on either side of my undies, using my undies to hold them in place. I change them every time I use the bathroom. And everytime thisis a fair amount of little dots of pus and blood on them. Seems like a good thing because it isn't getting on my undies and it is wicking away to bad. And maybe things look a bit better down there. But OMG it all hurts so much. Its less like the little pink caves/holes of my arm pits, and more like small dark flat wounds that leak. Well some leak and some seem to be doing nothing. Its all pretty flat though which makes me think things have improved. I don't attach the bandages but instead just hold them in with my undies. How do you all hold the bandages in?
For those of you that bandage and change through out the day, how do you clean the area when you remove the bandage before you put on a new one? In looking at forums, I saw that at one there was a hibiclens wipe that seems like it would be a great idea but I think maybe its not available anymore. I tend to use toliet paper to dab it up but I have been wondering if maybe that is making things worse because the fibers of the TP get in there?
I have been using witch hazel some to clean the are between showers. Witch Hazel using small cotton pads. Hurts a ton but again it seems to be helping. Any one else use witch hazel? What are your thoughts on it?
I have read that tea tree oil can help. For those that use it, I was wondering HOW do you use it? Do you dab on directly? Or mix it. Can I rub it over the whole area or should i just dab on each open sore? I just bought a bottle but have not tried yet.
I have been reading about people taking theraputic baths and that helps. For those that bath and it helps, what do you put in the bath?
I also read about taking zinc. Does any of you use this? Thoughts?
Just read about Manuka Honey and people using that. Do you just dab it on? Any one have experience with that?
I'm on birth control pills and I've read both that it helps HS get better and makes it get worse. Not sure what to believe. Thoughts?
I read on one site that you need to make sure the wounds are hydrated. Have you heard this? Any one have any thoughts on how to do this?
Thanks for everything.
Also like unidentified said, find yourself a dermatologist that knows HS.
If I am going out and I have wounds leaking, I bandage them up too, but sleep O'Natural :)
For really painful sores I put a glob of Vick's Vapor Rub on gauze and secure it, left it for a day and it was open and all the junk was brought to the surface.
Therapeutic baths vary.... one is adding epsom salts to the bath, another is adding bleach to you bath (only a tablespoon or 2) think of like a pool, but a lot less.
Some have found a paleo diet or eliminating nightshade from their diet help.
My armpits are so bad now that I can't shave and certainly can't wear sleeveless shirts so I'm considering surgery. I'm terrified though because I've heard a lot of horror stories. Some have shared good experiences as well and I'd like to think that I hear more bad than good because those are the people reaching out for help online.
I don't use bandages unless there is a ton of draining and I need to go out...I stain a lot of clothes (so I just wear dark colors) and bed sheets (so if I'm sleeping over at a friend's I'll usually bring a throw blanket to put on the bed/sofa it case something decides to drain). I did find if I cover that they take MUCH longer to heal.
If you aren't too excited about starting a special diet that is ok, it is really hard. I've cut out literally everything at one point and it isn't sustainable. If you can just cut out one thing cut out everything dairy. Dairy is the only thing they've linked to HS.
Also, find a new dermatologist if you can! I've tried a ton and none of them really knew anything about HS. The second to last one tried to tell me that accutane helps HS - total lie. I can't find it right now but there is a HS information site that lists HS doctors in certain areas. Found my current one on there and she is amazing (was part of the clinical trials for Humira and HS)
I'm only a little way through this book but I have found it helpful so far...
https://www.amazon.com/Hidradenitis-Suppurativa-Questions-Expert-Answers/dp/1284102556
Hope you get a chance to try some new things and find some relief and comfort! Take care and best of luck!
When dressing my own wounds at home the first thing I think about is hygiene. If a nurse ever changes your dressings watch carefully how she won't touch clean dressings after taking the old ones off. I have now formed my own little routine similar to theirs.
I also dress my groin and often have to change this after I have been to the toilet. My nurse said I should try to change it as few times as possible because everytime you take the dressing off is an opportunity for new germs to enter the wound. When cleaning the wound inbetween showers I use saline souloution.
Hibiclens has never worked for me and the roll-on antibiotics didn't do much for me either. This time, after an especially large area in the armpit area, my GP had me go to a wound care specialist. As a backstory I've had surgery on both armpits and on my lower abdomen in 2009 to remove the infected areas. I went through a bit of a remission from 2009-2016 but once it came back, it came back with a vengeance. So far the wound care specialist has seemed to make a difference, as he already had previous HS experience. He had me use broken down Flagel (gotten from the pharmacist in pill form) and apply it directly in the wound and then bandaged up with an oily-type bandage (forgive me, I can't remember the name) and then with another gauze-like bandage. Because my wound is underneath my arm, I haven't been using tape, because I had such a bad reaction when I had the wound vac and I feel I don't need bandage tape. I also took Augmentin I believe orally for the first 10 days, which calmed down the infection and smell. My wound has gotten smaller and is healing. I change the bandage every time I bathe or move the bandage, and I only "wash" with warm water. I still feel pain but it's NOTHING like I felt before I visited the wound care specialist. I don't care for dermatologists when it comes to HS because I honestly feel like HS is more than just our skin, because it greatly affects other things, like my joints, which I take Aleve when its really bad.
I tried turmeric but it didn't seem to do much but I have yet to try Zinc.
I have found that what may work for one person with HS may not work for another so it really is trial and error.
Hope this is helpful. I would love to say it gets better but I find that I have hill and valley experiences. Talking about it with others who have HS helps a lot.
I have been acquainted with this disease for about 20 years and at that time I did not have such easy research on the internet.
First, how did you intervene in the disease?
How much do you see doctor and medication.
How old are you consumption of kilo and alcohol cigarettes.
What are your eating habits. Fastfood chocolate milk and dairy products sweets and sugar cookies etc.
These are all very important in this disease.
First of all, if you can not control your disease, you should change your eating habits urgently.
As you know, this disease has no medication
So whatever you eat, the disease repeats itself. It is very important that you know it. And you should be careful not to eat them.
I could have kept myself under control if I was sick by eating and not eating any of the things I wrote above.
Investigate the Candida mushroom in the intestine. This is the reason for the biggest cause of the disease.
NEVER EAT CHEESE ... THAT İS VERY İMPORTANT
NEVER EAT ALL THİS...
CHOCOLATE, MUSHROOM, DRY, HAZELNUT, WALNUT.
SWEETS AND DREAMS AVAILABLE ON MARKET.
ALL READY FOOD.
ALL FAST FOOD.
THINK THIS HOSPITAL.
You BODY DANGEROUS THING THAT YE you are TAKING OUT.
FOR THIS
DO NOT EAT ANYTHING NON NATURALLY.
YOU MUST İT ALL NATURALLY !!!!
THAT İS VERY İMPORTANT
Do not let your charlatans say you are absolutely natural. It is fixed with experience.
Certainly do not consume milk and dairy products and mushrooms.
I DON'T have been eating cheese and yogurt for about 4 years.
In short, you will not eat fermented and mushy and sweet products. Buddha strengthens its relationship with candida mentality
I applied garlic cure for about 2 years. And I saw the very benefit.
I used Zerdaçal for about 6 months and it seems like it is impossible to drink. I did not see any benefit.
In my travels in China, we also received a juice cup called jujube, known as jujunap, and I saw it very useful.
Now, when I ate sweet or chocolate, if I could see a change in the diseased area, I could see that the disease did not progress, and even improved, when I ate 3-5 pieces of this fruit.
Http://www.aliexpress.com/cheap/cheap-dried-jujube.html this is the fruit.
My guess is that the treatment of this disease varies from person to person, but the use of milk and dairy products should not be used exactly the same.
And hygiene is very important from the beginning to the end of the disease certainly the region must be completely clean and dry.
I saw bacillus and oxygenated juice very useful. Whatever you do not use hygienic soap.
Cortisone creams may be beneficial but not used for a long time.
Certainly surgical intervention should be considered, even though it is not known how the disease is re-infecting.
Be very careful of 3 things.
1 nutrition
2 alcohol and cigarette
3 hygiene
And do not let anyone take money to treat you. Unfortunately, this hernia has no cure. But after the age of 55-60, it spontaneously passed, so we do not see that age
Do not fight this disease and get used to living with it.
I hope that I can help you.
Write to me at umut_bey@hotmail.com
ı will help to you ...