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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Shocked at how quickly I was diagnosed..
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Well, after having symptoms of HS for about 2 years and relentless research online, being terrifed at photos online, I pretty much self diagnosed myself with this.
Yesterday, I went in for my annual exam. New Doctor, same anxitiy of being exposed. I explained to her the symptoms I was having on and off, but never mentioned Hidradenitis Suppurativa. I happened to have one that was active and I have some bad scarring from previous ones and she imediatlly said it was HS! I was in shock because I had heard that this is often misdiagnosed, not a lot of people are aware of it and so on. I just couldn't believe it took her 5 seconds and that was it! I have HS. She told me that there is no cure, it is not contagious, and essentually it is boils. Okay, well, I knew that much. She did mention that she has heard that birthcontrol type of drugs have helped in some cases. Now, I know birthcontrol can help regular Acne. Then I got to think about it, and I realized I stopped taking BC right around the time my first bump appeared. So, I'm going to get on that again, and take Tumeric and hope that combination will work. I've been so emberrased the last two years because of the damage this disease has left behind. I'm also scarred to tell anyone I have it because the first time they hear it, they are going to Google it and be terrified because of the photos, like I was. I know most of those are the SEVERE stages, but does anyone have any good advise on how to approach this subject with a new partner? I mean, how do you explain to him that this scaring is nothing to be worried about, it is just Hidradenitis Suppurativa?!?!?!?! I appologize for this lengthy post, and thank those who actually read the whole thing though. I'm new to this group and any advise/comments are apprecaited. Thanks! Posted on 11/03/09, 11:11 am |
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I have been in your shoes I was diagnosed with HS in 2003. One thing is don't be afraid to tell people there are probably more people around you than you realize who also may be suffering with this also. The more we talk about our disease and get it out there then hopefully we can start to get more research done and possibly find a cure. Hold your head high and remember you are beautiful no matter what. DO NOT LET THIS DISEASE DEFINE WHO YOU ARE.
Take care of yourself. 
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Thank you so much for support and positive vibes. I think this website is going to be really good for me. That is a good idea, not to let it define who I am, I never thought about it that way!
*Hugs!*
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First of all when you find someone that you feel is worthy (yes worthy) of you, tackle this issue just as you would any other life changing issue..head on. Don't be afraid of his reaction, if he is truly the man who loves and cares for you he won't let this disease affect the way he feels and YOU will have gained an essential ally in the fight against HS. I too agree that there are far more of us HS sufferers out there that have NOT come forward for some reason or other, be it shame, misdiagnosis or fear of stigmatism and ridicule. This disease is hereditary and isn't caused by anything you DO or Don't DO! It isn't because you aren't "clean" or because you are obese or smoke, or don't smoke or because you started or stopped birth control pills. It IS something you were born with and you can not "will" it to stop anymore than you can "will" yourself to be taller! Sure there are "triggers" but I don't believe even the few learned professionals have more than an educated guess as to what is actually going on with us. I hope that the tumeric (some great results there!) and the birth control help you! I know that going on birth control has helped ease symptoms for some. I know I am probably not offering the best advice to you, but I just feel that you shouldn't be scared of what others think, this IS your life..like it or not, and the sooner you accept that and be proud of WHO you are and what you have to offer in life, the faster you will be happy. I agree with mymy, Don't let this disease define you! I have never seen anyone apologize or feel ashamed for having blonde hair or brown eyes, and this disease is just as out of our control as that, we just have to learn how to handle it the best way for each of us and be proud of who we are! Now, Thanks for reading to the end of my book! ;-) lol.
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I totally agree mymy! This is something I have, not who I am. I guess over the years I've tried hide it from friends, but then when I couldn't do certain things or go places with them, they'd ask questions or pressure me into going. Finally, I told them why. Now they do what they can to help me when I have a flare up. Not one of my friends has turned their backs on me because of this. Same goes for my huzband. I was diagnosed after we'd been married and he knew about the shape I was in. I've explained to him the things that help me thru a flare up and he will do those little things. Although he doesn't fully understand the pain I can be in, he does help me out. I hope this helps you, and you continue to have strength.
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I was always afraid of the same thing, exactly the way you described. My husband was really taken back when he first saw them. At that point in time, I didn't know what to tell him because I didn't know what it was or what caused these lesions and scars. Fortunately it didn't become a big issue for us, and now we both know (thanks to the magic of the internet!) and he's not concerned anymore (unless I'm in pain and won't let him touch me!)
Honesty is the best approach with a new partner, I guess. It's not contagious and that's really all they want to know. I'm sorry you're struggling with this. I know how embarrassing/scary it is to anticipate someone else's reaction.
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I beg you to please read my page and find out how I ended my HS outbreaks.
http://hidradenitiscure.ning.com/p...
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I am so glad to have found this support group because I have the same problem.
I too, like many other HS survivors have diagnosed myself yesterday because the doctors keep giving me antibiotics for it and it keeps coming back. I have also avoided intimacy and relationships because it is a hard thing to tell someone. But like MYMY and REBECCA V have stated, we just gotta wait and find someone who is worth our time and can be understanding to our scars.
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Relationships:
I have dated men who not only where understanding but would actively help me drain, bandage, and clean my wounds. I have also dated men that figured if I did not talk about it and they did not look it could simply be ignored. When it comes to talking to a guy about it I find the best approach is to not throw it on him all at once. I explain what it is and how it affects me. Then answer any questions he may have and let it be. I find when I immediately show him my battle wounds per say it makes both of us uncomfortable. It's hard b/c you so desperately want him to understand so I tend to talk it to death instead of going at his pace. The sad reality is that yeah he may not be able to handle it even if he wants to and the relationship may not work out, but then the opposite is also true. He could accept not only the HS but the whole you. Then you will be free of anxiety and open to endless possibilities together.
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