What is Hidradenitis Suppurativa
Hidradenitis suppurativa or HS is a skin disease that affects areas bearing apocrine sweat glands and hair follicles; such as the underarms, groin and buttocks, and under the breas...
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Newbie with HS
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Good morning everybody. I'm new here - just found this site this morning and I'm so glad I did! There doesn't seem to be a whole lot of support online or anywhere else for people with HS, so I'm looking forward to getting to know you all.
I have a question for anyone willing to answer: Were you medically diagnosed with the disease, or did you do a self diagnosis? I ask because I diagnosed myself. I'm 101% sure this is what I have. But I haven't gone back to any doctors because I don't want to take long term antibiotics. They've done that to me in the past for 'boils' and it really doesn't help. I've gotten these painful, red lumps (mostly on my upper, inner thigh) from the time I was a very young child. My dad's mom got them, too, and she just said they were 'boils'. So when I would go to the doctor for mine, they all told me the same thing. "It's something in your blood. Some people get them, and some people don't." That was the best answer a bunch of different doctors could give me. So I lived with it. Then about two years ago I did my own research online and found out there is actually a horrible skin condition (with a name! LOL) that affects millions more than the world knows about, because people are ashamed to go their doctors about it. I can understand that. Anyway, I'm grateful to be able to say that mine is not as advanced as some of the images I've seen on Google, but of course I am worried. I've read that people can actually get disability for this because of the way it affects them. I certainly don't want that, but I can definitely understand it because often times - when I have one or two of the painful lumps on my inner thighs - it hurts sooooo much just to walk! Mine have become less and less since I've lost weight, but they still come sporadically, and they still hurt. So even though I know there is no cure, I'm really anxious to meet you all and learn what kind of treatments you've found to be helpful, as well as how you all deal with it. I believe I'll learn a lot here, and I want to thank you for taking the time to read this. (Sorry so long!) Posted on 11/03/09, 06:11 am |
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Welcome! I'm new here as well, just found the site yesterday. I flared up so bad over the weekend under my arm that I had to find a support group. My family loves me but they no idea how painful one of these "tiny" bumps can really be. My derm has me on Doxy and Clind gel. The Doxy is and antibiotic that he has told me to take when I get a flare up. So basically I decide when to take it or not. And the gel is topical that I'm supposed to use the same way. Not sure if either of them really help. For now I just use moist heat compresses when I can and lotsof rest and fluids. I wish there was an instant reliver other than lancing. It seems that there are many ways that ppl try to relive the pain and I've tried a few myself so far. Very pleased to meet you and hope to learn more from you. 
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Welcome, young lady. You did the right thing by doing research and yes, I would say you do have HS at an early stage. After several trips to dermatologists,who dismissed them as "groin cysts...everybody get those", I finally found a good dermatologist who diagnosed them immediately.
If you are in early stages of HS, it can get worse in frequency and it can spread to other areas of the groin. Please see my post about ALKALINE WATER, TURMERIC PILLS, ETC. I know I'm going to eventually get on someone's nerves by pushing this, but I have been cyst and lump free for the last five weeks...after four years of constant cysts, trips to the doctor and anitbiotics. They were getting ready to put me on Accutane for the rest of my life. Hang in there. Much love, Calguy
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Hi! Welcome to our group! I am so sorry you too have this damn disease, but I guarantee you, you wont find a support group as helpful, friendly and loving as this one anywhere!
I hope you reconsider your decision not to go back to your doctor for physician diagnosis, you will be glad you did IF the time comes that you DO need to get on disability. Arm yourself with all the information you can get, print off text and pictures and go to your doctor armed with knowledge, it will be most benefitial to you. I also know that antibiotics can slow the progression of HS and keep it from getting to the final stage as fast as if you do not take them, perhaps you will only need antibiotics during a flare up like punksmom..although I have never had this wonderful choice, lol. I am on doxy permanently :( Oh well, whatever it takes to help, I guess!
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Thank you all so much for your replies. I'm glad that medicine and ointments are helping you guys! The only thing I ever use is 'fish oil' or drawing salve. I forget how to spell the proper name, so I won't even try :) It stinks - bad - but not quite as bad as the wounds when they decide to open and drain. I think that is the worst part of getting these things.
Anyway, thank you all so much for taking the time to welcome me. Have a great day!
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The drawing salve, is it Prid? It works so/so for me. There is also a cream out there called Boil Ease that works so/so as well. I have found that a hot bath followed by hot packs and a scalpel to be the best releif of all. :-)
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I have used Boil Ease before. My mom discovered that at the drugstore back when I was in high school, so she bought it for me. It did work. Since I've grown up and can't afford the expensive name brand stuff anymore, I just get the store brand (usually just called "drawing salve,") and it really does help. But it smells so, sooo bad!
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It's hard living with this disease and wanting to have a "real life" and love. Being embarrassed and in pain etc.
I just started this group but use to belong to different one I lost track of. So I'm here now primarily to offer my solution to our pain and suffering. I've had boils all my life and HS over the past 10 years. If your interested in what worked for me, take a couple of minutes to stop by me here. link below. http://hidradenitiscure.ning.com/p... Peace and Blessings, Vivian
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