I've Never Been Formally Diagnosed...

but I've had the symptoms since I first hit puberty. I only flare up in my pubic area...lucky me. Sometimes, it becomes so painful to sit, walk, stand, etc. I never wanted to be involved with anyone because I figured that no man who hasn't known someone with HS could ever be sympathetic to my situation... or my scars. The scars are absolutely horrible. I don't hate myself for them, I just hate how they're aggravated during times of stress. But I keep on, I keep moving, and I just wait for them to go away. I might try birth control and see if it helps. Otherwise, I just try to think on how my situation could be so much worse than it is.

kendyboo kendyboo
8 Responses Oct 3, 2008

I am also a Hidradenitis Suppurativa sufferer. I have found many remedies that have allowed me to be flare-up free for 1 1/2 years. Please visit my blog at hidradenitishealing.blogspot.com for updates, HS friendly recipes, and support!

I was formally diagnosed with Hidradenitis when I was around 10 years old, but I still have the same fears as you :( I hope you will one day find intimacy not so frightening:) But you know it would really help if you go and see a doctor about it. There are some great medications out there that can reduce the pain and heal the scars!

I've never been formally diagnosed either. I started getting the bumps when I was around 14 or so and they were always in my pubic area. They were pretty infrequent for a few years but then they reared their ugly heads right after high school. Now I get them pretty much everywhere - back of my neck, underarms, pubic area, under my breasts and around any fat rolls. Lately they've been pretty quiet and I'm praying that they stay that way. They do open and leak a lot but the pain has been pretty mild. That's really strange for me because I've been under a LOT of stress (money problems) lately.<br />
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I don't take any medication for my HS and I've never been to a doctor about it but I'm 100% sure that I have it. When I do get bumps, I'd say they're around stage 2, maybe stage 3. I have a lot of tunneling and they get pretty big (marble to golf ball size, depending on where they show up). I did take zinc and turmeric for awhile and that DID help a lot but I have a hard time with pills so I stopped taking them.

I'm taking zinc supplements. They are working better than when I took turmeric. Also, my doctor just gave me a presc<x>ription for Differin cream, a topical lotion. I'll let you know how that works after I use it longer. <br />
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Please, please go see a doctor and get a diagnosis. This website and group are great, but a doctor, a dermatologist, will understand what you are going through. My doctor never asked me why it took me 16 years to get medical treatment. And, I am not the only one to wait this long to go to a doctor, so maybe your doctor is used to people waiting and "hiding" with HS.<br />
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The best thing, for me, about going to a doctor was that I could finally tell someone about it. It's not the same as typing the words on a computer and posting it on a message board. Using my voice to tell my doctor what I had and what I was going through really is amazing. If you don't tell anyone else about HS, at least you can tell your doctor and that will be a HUGE weight lifted off your shoulders.

hello any results with the differin cream?

I had gone out of work for anxiety and depression and was turned down from my disability section from work because the medical did not support their criteria. Of course that was because I had not told my psychiatrist or counselor about the HS. I hadn't even told my MD. I was embarrassed and thought that it was because I was not taking care of myself the way I should. I am a big lady and I was getting breakouts on my butt. How do you confide that in someone? I finally told my MD because one was so bad I had to have it lanced. He told me to see a surgeon and I finally got a diagnosis last month. I researched online and found some remedies that can help. But the best thing I found was this website for support. <br />
Talk to your doctor and check out the websites for HS that offer help. One of the ones that is helping me so far is aidance something. Can't remember right off hand. Good luck.

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I have had HS for around 7 years now. Some breakouts are bad and some are bearable. I think there is really no rhyme or reason to it. Around this time of the year (summer) is when it is at its worst for me. Luckily I have not had any outbreaks since last July of 2010. It ruined my world cup experience. My doctor had prescribed me Keflex also known as Cephalexin. The problem is you can't take Keflex year around because it is a strong anitbiotic. I typically have a jelly bean size and very hard bump under my armpits. I experience discomfort but it is bearable. When the infection starts to get bad it can turn into the size of an egg until it drains. When I can feel the infection worsen I take my Keflex and it has been keeping it in check but the bump never went away. I also clean with hibiclens but from what I understand hygeine has absolutely nothing to do with it. The Keflex has had my spirits up and feeling that I could contain this. I was also prescribed clindomyacin lotion.. But... NOW READ THIS. I SWEAR IT WORKED FOR ME. I FEEL OBLIGATED TO POST THIS.. ITS UP TO YOU IF YOU WANT TO TRY IT OUT. IT IS VERY INEXPENSIVE COMPARED TO THE THROBBING ACHING PAIN WHEN IT GETS BAD..<br />
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All of my friends are aware of my problem because I decided I wasn't going to be embarrased about it anymore or let it affect my personal life. When my friend told his dad his dad told him he he had a friend that had it too and he went to countless doctors who were unsuccessful in treating it. The last time he went to the doctor (because obviously he never had to go back since this worked for him) the doctor told him to simply eat swiss cheese. I know it souds crazy but please keep on reading. Apparently Swiss chesse has a different type of bacteria than any other cheese and the reason for the holes in the cheese are because the bacteria expels gasses. Something in that counter acts what we have. I can honestly say I have no bumps and have been eating Swiss Cheese for 2 weeks now. I don't eat an insane amount but I go through about 1 lb in 3 days. I only eat the swiss cheese from Switzerland not made in Connecticut or anything like that. I don't know if they use the same process. I found it at Sams club for $1.17 per lb. , which cost around $25 a week. Someone please try it. It WORKED for me.. I do not own a cheese company or invest in any stock of any kind. I just want someone else to try it because maybe this is a coincedence... But maybe not.<br />
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Feedback Please."

Try Tumeric, the spice. I drink the powder form but they have pills if you cant stand the taste. I take it 2 times a day.. You will notice the difference almost immediately.

I know exactly what you're going through...its horrible. According to what I'm reading I'm in the 'severe' catagory. I'm just tired of it. My main problem is that I'm afraid to get help. How could anyone understand why I haven't had this taken care of? How could I force anyone else to look at this? How do I get help? Who do I call? I dont have a doctor... All of these things are so humiliating to me that it's easier to just hide...