How do others suffering from hidradenitis suppurativa cope with intimacy? What issues have you come

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Recently, I was dating a guy and we finally decided to be intimate. Between my thighs the skin is discolored and I have black heads and scars. The guy and I did have sex but he didn't immediately notice it since we were in the dark and then he proceeded to ask me if I had an STD because of scarring in my inner thighs???? I felt humiliated. After I left, he called me over and over and when I answered he was still asking me about it. I ended up pulling up my medical records to prove to him that I have been tested for STD's and did not have anything. I cried about it and it just makes me feel like I cannot get involved with anyone. I don't want to ever feel that way or be questioned the way he did me. I texted him later and told him how I felt and he never responded, so I'm sure he wants nothing to do with me. I feel disgusting. Like I disgusted him. I just decided I'm not foing to date anymore. My self esteem is shot!

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  • Posted

    Oh I'm so sorry to hear you had such an awful time , this thing is just nasty and I too have cried off getting into a relationship because of it. 

    Not only does it leave awful scars if leaks , so your constantly oozing which no one wants let alone for a partner or anyone to see when I saw a dermatologist I was mortified at showing him it. 

    I wish I could offer you something positive but I don't know what to say , only Hs doesn't define you , I'm sure your a beautiful wonderful person , it's his loss for being so ignorant and an idiot.

    i hope one day you find someone who likes you for who you are 

    good luck x 

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  • Posted

    I agree with Anne! You can do better than that insensitive ignoramous! Please don't feel defeated. Charge on. Be pro-active. I did my research.  CO2 laser surgery has had a very low recurrence rate. But it is relatively new. Hard to find skilled personnel that are certified in it. You'll have better luck calling teaching hospitals. I'm getting mine removed, which I have had for 10 years, by the Cleveland Clinic in Ohio in late October after failed standard knife surgery 2 years ago.  Caveat: Not all cases are a candidate for CO2 laser removal. I was. Also, there is some evidence now that diet plays a role in HS. Cut out all yeasts  and night shades. No bread, no beer or wine, nothing made with yeasts.  No potatoes and any other night shade vegetables.

    Good luck

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  • Posted

    Hi Zen!  It sounds like you didn't discuss your condition with the guy prior to engaging. I don't like talking about my HS as all. There are only 2 people that truly know what I have. Being intimate with someone at this point  is not something that I'm even interested in. However, if I were to, I would at the very least try to explain the condition and what I'm going through. Even though HS is not and does not have anything to do with STDs, unless you've had a prior conversation about your condition,  of course your partner would or should have some concern.   If you decide to enter another relationship, I would suggest having an HS conversation prior to intimacy.   There are a lot of doctors that have never heard of HS, let alone the layman.   Wishing you continued remission!

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    • Posted

      I agree with you. The more I thought about it, I understood why there would be concern. It hadn't really been an issue for me as my condition is very mild. I just didn't understand how he would relate scars between my inner thighs with an STD and I felt disgusted with myself. I am fully aware of my imperfections and flaws, I really don't need anyone else making me feel worse.

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  • Posted

    Really this person is decrying the way you live your life ? I think that's just as bad as what he said to you , for goodness sake this is such a tough condition to live with we don't need to be criticised by other people but made to feel that we aren't lepers and are entitled to be loved like anyone else 

    stay strong and live your life the way it makes you feel good 

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  • Posted

    Zen,

    What a horrid POS! I'm so sorry you had to go through that. Intimacy is hard but a couple things can help. The discoloration can be made worse by wearing tight clothing. So, if possible wear loose clothing. Also, laser treatments really helped me with the discoloration, it decreases the fluids and alleviates out breaks. Prove medical necessity and it is covered by insurance.

    In future when someone asks just say it is hereditary and completely noncontageous. State it as a simple fact, a part of who you are, because it is. Just say, "Yeah, it sucks," and move on. Try not to let it become a big deal. If he wants to make it one just say," It's called herendistis supertiva look it up."

    Finally, you can find the right man who will love you "warts and all" or even "HS and all". Don't stop trying. You are loveable! That guy was a shallow prick that's all.

    Best of luck!

    Nimwey

    PS. Spironolactone and birth control helped me as well.

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