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, culminating in drainage, often leaving open wounds that will not heal.

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sex life, or the lack there of.

i am so frustrated with this disease, it has killed my self esteem and made it neerly impossible for me to even attempt to get in a relationship with a woman. in the past women have been understanding, but now it has progressed to an area where it not only affects me mentally but sexually also. i can only hope that this acutane works like it has in the past or i might just b single for the rest of my life.

Replies

deleted_user
deleted_user

No you wont! First of all stop thinking like that! There are women out there who understand and will love YOU for YOU, HS and all that goes with it! Believe me, I too thought I was doomed to be single, then I met a man who loves me for who I am, and he accepts HS and walks the walk of it with me. We have been married for 10 years and have 2 wonderful children together. There are days when I am the biggest bitch on the planet and he even accepts that and knows that it is the pain of cysts talking and not what I truly mean. I have had HS for 27 years and am stage 3 with scars and cysts everywhere you can think..even on my face..if I can find true love, ANYONE can! I am confident that you will find your soul mate as well, it is just a matter of time.
deleted_user
deleted_user

I was right there with you thinking no one would ever want to be with someone who has bumps and scars all over the place. But, like RebeccaV, I finally found the right man and am engaged to be married. I was so scared that he was going to be disgusted with my body, like I am most of the time, but he loves me for me and is continually helping me raise my self esteem. I have had HS for about 15 years now and there was definitely a time when I thought no one would ever want to be with me. I know it's hard, but you really have to keep the door to love and acceptance open, and know that there are gentle, understanding people out there.
deleted_user
deleted_user

I am agree with you,girls..My body is complettely destroyed with HS,but my soul and heart are clean.Due to Hs all my emotional and sexual life was broken down,including my marriage with wrong person.I was down,but,at moment I am with wonderfull girl.Like Rebecca said,if I can find true love,anyone can.Bumpy,be strong and don't worry,you will find somebody.
deleted_user
deleted_user

To all you people out there that share my pain, I desperately need advice. I'm 29 and I've had HS since puberty and needless to say it's no surprise that this has been the bane of my existence and the source of major insecurities and serious self-esteem issues in dealing with people in general, much less get in a relationship with a man and have to tell him about this and attempt to explain or God forbid show him. It is an ugly nasty disgusting disease and frankly if I didn't have it, I'd be repulsed by it. My point is I've never even thought of entering into a relationship because the last thing I need is an unfavourable reaction to this problem which would be even worse for my self-image and self-worth because I already loathe myself enough the way it is. But I just can't go on like this - I need intimacy and I feel like I don't even have a right to want or pursue a relationship. I just want to know that I have that option. To all you brave people who have somehow overcome this barrier and are now in happy relationships, how did you do it? I want to hear from you (especially women). I would appreciate specifics such as when you are interested in someone and start going out with them, how soon do you tell them about this disease? How do you handle it if the reaction is bad? etc.
deleted_user
deleted_user

Listen up people. I am recently divorced and looking back I can say that it was the depression and self loathing that stemmed from self image issues that destroyed my marriage,..not the disease itself. I am going to be blunt here...you need to do some soul searching and learn to love and respect yourself as you are. Once you can do that you will have the confidence to get out there and date again.

Here's the blunt part. Vaginas are vagainas and cocks are cocks ok? Guys...you can still go on dates and be charming....until you get in a situation say where you are watching a movie with someone and start rubbing their shoulders or something. By this time in the relationship there should be at least a little trust established. Once she is really going just get serious and tell her you have a skin disease and that you want to keep your boxers on or whatever...at this point she is already into you and has decided to sleep with you so piece of cake right?

Girls...don't get with guys that are assholes is my opinion. You should be able to tell this well before any sexual encounter. Guys are much more tenacious than women. If they know they are about to get it trust me some boils and scars is not going to stop them! lol

I know this is blunt but these are legitimate issues we young people face with this disease. If nothing else from my marriage I do know how to please a woman orally and I really enjoy it. Now for me I am uncomfortable in having oral performed on me because of the scarring and stuff but thats ok. I can do my thing and then just go into the real deal no problem.

There are understanding people out there. Guys i suggest going for nurses because they medically understand the stuff and it won't bother them as much.

I suggest number one just use this time that you are single to figure yourself out. Meditate and learn how to become comfortable in your own skin. Accept yourself how you are before you try worrying about relationships ok? Work on you and don't look for love....it will find you when you least expect it.

Hope this was not too offensive for some readers and hope this helps.....

DustBuk3t
deleted_user
deleted_user

HS has been destroying my self esteem for long time. Every time I got outbreak I would stay at home and get into "why me?" mode. Obviously I was psychologically suffering -- even more than physiologically.

With time, however, I learned to accept this disease and that I can't 100% control it. I can manage it to some extent -- diet, exercising, good sleep, stress reduction, and antibiotics (when things are getting hairy). I hope that one day it will go away completely, but now I will keep it in control and if I get another boil so what? I can live with that -- some people have worse health problems and since this is the only health disease that I have -- I feel blessed.

As far as sexual and dating life -- understand this -- HS DOES NOT DEFINE WHO I AM. IF YOU CAN'T HANDLE IT IT'S YOUR PROBLEM -- read it hundreds of times until you get it.
deleted_user
deleted_user

Im 23 yrs old and because of HS ive never been able to feel comfortable getting intimate with a guy. I get to that point and shut down emotionally because of the fear of how my skin looks. I found a good guy right now but i have yet to tell him about HS. I don't know how or when to bring it up. If i should let him know before anything should happen or wait until its going to occur to say anything. I've never had sex or anything because im just so uncomfortable with my scars and boils. This man seems like he really cares for me but to let someone see me .. that way.. I dont know if ill ever be intimate with someone. Ladies HELP!!
deleted_user
deleted_user

I understand what you mean i,m 17 yrs old and i,ve had hs for 4 years. now it has put me down and i would like to have arelationship with a girl. and iwould love to have sex one day and i pray about it .
deleted_user
deleted_user

Peekaaboo I'm in almost your exact same position. I am also 23, and have a guy in my life who wants to see me naked. I can't do it. I'm too ashamed. I don't know how to get over the fear that he will be disgusted with me and leave. Even though he tells me that he knows he'll like what he sees, and I've explained to him that I have a skin disorder, I'm still scared out of my wits that I'm going to lose him.

I feel like I'll be alone forever!
Jean1979
Jean1979

I just turned 31. Ive had hs since I was 16. I could always find a way to hide it, lights out etc.... However, its gotten really bad in the last two years,trust me there's no hiding this. Also, I met my fiance around the same time things worsened. I think you just kinda know when the times right,and whether or not you trust the other person. I had been throwing out hints, and one night had a little to much to drink Andrew told him everything. This may not have been the proper way, but I needed a little courage. After I told him, I actually felt a little silly, like I had made such a big deal out of it, when it didn't bother him at all. He is very supportive and a blessing. However,I know not all me, or women are that way and that's were the courage juice came in. Good luck to everyone dealing with this issue. If they cant handle it, you didn't need them in the first place. Love yourself first and the rest follows. I know somtimes its hard, but your worth it!!!!!!!
deleted_user
deleted_user

omgitsk8- Im happy to know that im not the only one deal with this right now. Ive decided that im going to tell him in two days when i see him.Its been nearly two months and he told me he loves me. He sees i have low self confidence and its time to say something. I cant bare the thought of letting him falling harder for me without knowing the truth. I saw something on one of these discussions i might butcher this quote but " if they cant handle us on our bad days they don't deserve us on our best" that is giving me some strength right now to tell him. I hope he doesn't run away in disgust.
deleted_user
deleted_user

I once dated a man with Torrette's. He would bark during sex. I think a few cysts in the groin would be less of a turn off lol Seriously, woman are more understanding than you would think of us to be. You'll find something that works and the right woman will fall into your lap, so to speak.
deleted_user
deleted_user

Peekaabooo--Good luck! And youre totally right... if he doesnt accept you then he's not worth your time. I told the guy who likes me that I have a skin disorder, he said he didn't care and wouldn't judge me. I just hope it's true. I didn't tell him any more details yet.

I really don't think he'll run away if he really loves you. Good luck...
deleted_user
deleted_user

good luck to you too
deleted_user
deleted_user

i know hs is such a rare disease .. but i guessing the goal is for u to make sure you find yourself a kind open hearted person who will see you for the good things u have and not the flaws that life gave you. Sometimes when i find my self fighting with bf i wonder will i ever really find a man who will love me and respect my body. and i just think in life you get what u look for. A good looking man with a mean heart just looks ugly. So maybe you can build a realtionship first with potential girlfriend before you cross the line.. of Non-monogamy....... my favortie quotes are ... let the beauty overcome the beast .. and A face change throughtout a life time but i heart as pure as yours can last forever