Does anyone else have Hidradenitis Suppurativa? - Page 4

ChrissyJo · 03-22-2009, 08:00 PM

Wow, I would have beenpissed enough to march myself out of there in gown and glory after that. What an A-hole! My HS turned into staph but my doctor told me it was mostly because a vius infection gets into it, esp. if you've been trying to squeeze it or stab it. I'm sorry you had that moment. I think youshould consider filing a complaint. If anything maybe it will force Doc. A-Hole to do some reading up on HS.

tryinforbaby1 · 03-23-2009, 01:17 AM

Thank you for posting this information. I am glad to know I am not the only one experiencing H.S. on top of my PCOS. I had never had anything like these cysts/boils I have now. I only get one or two at a time but I always seem to be treating one.

I went and seen a dermatologist when I started getting them about a year ago and she perscribed me doxycycline to treat it. I have to say it really helps although it doesnt completely get rid of it. I still deal with a boil every once in a while. I find also a hot compress will help with the pain of a boil.

mbridget · 03-29-2009, 04:17 AM

I was diagnosed with PCOS 2 years ago. Last week I got what I thought was a boil in my armpit -- but it never came to a head like ALL of my other ones had. I had been looking on google images to find something that looked like what I have. That is when I found HS and started reading about it. I broke down and went to the doctor praying that she would say that it was not HS. She took one look and knew. DAMN!!

Eva37 · 03-29-2009, 06:18 AM

goodness what a thing for someone to tell you

ive been told by my derm, and his nurses, and my gp that being 'dirty/unclean ' is nothing at all to do with hs.

Jess1216 · 03-31-2009, 09:27 AM

Has anyone been through this while pregnant?

I've got one in my groin now that's KILLING me. I broke down in tears this morning because I've reached my pain limit & i don't think there is much I can do about it. Last time I had one this bad my doc gave me a shot of toradol & it took the edge off and reduced the swelling some.

Now I can't just go in & get a shot in the butt : ( I've been keeping warm compresses on it & using epsom salt in the area but nothing is working yet. It's big, and it's hard and it's almost all under my skin. There is a small bubble on top that looks like it could drain there but it's not.

Then I made the mistake of Goggling and ended up crying. One site was talking about how bad it was to have these while pregnant because the staph spores can effect the baby and yadda yadda.

I'm SO freaked right now!

Gylina · 04-02-2009, 07:22 PM

Hi Ladies!!
I've been taking 1 tsp of turmeric in warm water, 3x day. I'm really amazed. The Hidradenitis is gone...I had it everywhere and I can't believe it!
Please try it. I go to CARS in Asheville, with Dr. Thatcher who is a specialist in this field, and they hadn't even heard of this.
The turmeric is totally gross and you have to choke it down (don't stop stirring as it will settle to the bottom of the glass), but I've been doing this about a month and I've got it down to a science. No biggie- Just eat something lovely right after. The pills did not work as well for me.
Also have been doing 2 tbsp of flax meal in my oatmeal in the morning, and 1000 mg of cinnamon, but the turmeric is amazing.
It can be a blood thinner, so if you are taking blood thinning medications, talk to your doctor.
Thought I would share...
Got my test results back today- no longer insulin resistant. Everything is normal...for the first time in 9 years. I feel like a new woman!

laura23rn · 05-03-2009, 11:58 PM

I have had HS for quite awhile now (although never treated). I've had a couple 'boils' on my upper thigh that ruptured in the past. They were painful and hard for several days before finally opening up. They drained for an hour or so and then went away. Other than that, I've never had anything more than a couple swollen bumps that eventually went away without draining. Recently, under my arm, I've had 2 boils/cysts that opened up and have been draining a clear yellow to a blood-tinged discharge for a little over a week. My skin is irritated from constantly having to keep it covered (and pulling adhesive off). I know that I need to make an appointment to see either my family doctor or a dermatologist (part of me wants to live in denial, especially since I'm not sure what they can do anyway), but I'm desperate to find out how long these typically drain. I've more than done my research but can't really find any information on it. Has anyone else dealt with this? How long did it last? What were your tricks to caring for and/or treating it?

silver28 · 05-05-2009, 10:52 PM

I belong to a WONDERFUL yahoo group called HS worldwide. All the members are HS sufferers who share their experiences with HS and inform others about what helps and what does not help with their HS. Everyone there is SO helpful and is happy to answer ANY and all questions you have about HS. They also have files of information. Here is a link to that site:

http://groups.yahoo.com/group/HidradenitisWorldwide

Also, Thank you Gylina for sharing your experience with the Turmeric. My HS group has been RAVING about how great Turmeric is helping. I had tried it several months back in pill form and it did NOTHING to help me. After reading your post and seeing the pills didn't work for you either I decided to go to an herb store and buy the spice. Day 4 and my HS is disappearing. Its a great feeling to know that for the first time in 15 years Im almost bump free - lol

Bianca · 06-01-2009, 03:43 PM

silver28 - Thanks so much for posting the link to the HS group on Yahoo. I have signed up, but am waiting for approval. I've suffered with HS since I was a child and am horribly scarred by the marks it's left on me. I still suffer from them and would love to find something that could help.

eizzil · 06-01-2009, 11:06 PM

I also suffer from this and i too also have lots of scars, sometimes these can really get me down

jo.b · 06-03-2009, 03:27 PM

i have had these for years but only found out what it is recently. mine are painful and all over the places people ahve mentioned here including my buttocks. i have problems getting the doctors to believe me because they take one look at my size and think "dirty fat slob" even though i wash myself often. i even had one doctor say i got them because i scratch at zits on my body after i pick my nose....for one thing i use a kleenex and i wash my hands afterward. for another he made assumptions that are not true. having HS is difficult but dealing with the bias those in the medical profession have for obese and extremely obese(i do not like the word morbidly, like i am some kind of monster just cause i weigh more then some of the population) people is worse cause they won't help you and won't believe you.

i can't take antibiotics because it makes me severly ill (almost all the ones i have tried).

chrissyjo, i ask myself the same question constantly. what did i do to God, the Fates or whatever other diety there may be to have to suffer through all these things. i ain't going to h*** because i'm already there.

i don't know how many times i have looked at the ceiling after something new pops up body or health wise and said in so many words "just kill me already.i can't stand to look at my body with the body and facial hair and the sores and the scars.no man is going to want or love me looking like this. i am so ill from a humiliating and in my case debilitating disease (IBS) i can't even support myself financially or even go for a small simple walk for 15 minutes. many days i feel like 85 even though i'm only going to be 35, the only dream i ever had:having a child has been taken away from me and everybody in my life assumes i am just making excuses and being lazy,that i'm not really ill. i'm tired of living .enough with the burdens, i can't take anymore.just kill me already."

i know totally where your coming from. a person can only take so much.
and i can't even change doctors cause there is a shortage where i am and nobody is available.

beleive me, i know the frustration......and lack of hope.

Angelito13903 · 06-09-2009, 10:46 PM

I also suffer from this, I am 28 yrs old and I have had this condition since I was 14, I am happy to find this post since I have never shared this with anybody, one time I got one of this so big and painful I ended up on the ER the doctor that assisted me told me it was an infected ingrown hair on my lower back area, but I get these all over my body, I am definetely trying the tumeric that one of the cysters recommended...

lissalovespink · 06-10-2009, 02:13 PM

I am so glad to hear about other people with this condition. I've never talked about it to anyone other than my doctor. Thankfully I've never had one bad enough to have to go and get it drained. As someone already said, I've heard that some people with this condition have it way worse than I do. My doctor said that it could be treated with long-term antibiotics, but that makes birth control ineffective. At this point, not looking to conceive Has anyone else tried anything that worked?

silver28 · 06-11-2009, 11:36 AM

Hi lisa, your very lucky never to have one bad enough that you needed to have it drained. NOT FUN. Your DR however should do a LOT more research on this condition. Im no DR but I have had HS since I was 15 and I am now 29. I have been treated with every round of antibiotic and topical solution the DR's could think of. I have also taken it upon myself to do every bit of research I could possibly imagine and join every support group I could to learn about this condition. Sadly there is NO cure for HS, they dont even know what causes it. They know what it is yes but thats about as far as it goes. My support group has sent many petitions to research teams trying to get them to fund a research project to find a cure. Unfortunatly it has made no difference. HS is such a rare condition that there is no profit margin in finding a cure as of yet. Also if your DR suggests putting you on Acutain you should decline. No matter how good he makes this medication sound it does not work. its 6 months of misery and has proved to make HS SO much worse in the end.

amymichele · 07-14-2009, 12:41 PM

Yes I have this too! It's what lead me to find out that I had PCOS. Mine are on the groin area and panty line area, they hurt and it makes it hard to walk & some clothes seems to make it worse! I have found that using rubbing alchol during the onset of a sore drys them out very quickly & can keep them from getting bigger. Also using regular body wash & then washing with dial soap in that area can keep the breakouts from coming. This works great!!! I have filled a soap dispenser with dial soap & it is my savior!! I was just perscribed doxycycline hyclate for my latest breakout! Going swimming & wearing a wet pair of shorts for a short time can also trigger some of the onsets, so be careful.
I am sorry that we all have this, and at the same time it is nice to know that we aren't alone in this crazy experience. If someone else has some helpful ideas PLEASE write and let me know!! I am a bathing suit freak!! & i can't even enjoy them b/c of these horrible sores!!