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HS & Intimacy

Does anybody else feel guilty when they think of giving in to their sexual urges especially if you have HS in the groin and buttock area?


I know I struggle with it constantly. I don't want to make anyone else or myself uncomfortable. I used to fantasize about one-night stands but what I want is that level of intimacy with someone I love and can truly trust because of the complexities of my existence. I wish it was as simple as acting on my desires instead of having to sift through all of these other physical and emotional layers.


Do you indulge or do you shy away from experiencing pleasure from another human being?

  1. I’m 43 and been blessed with a new husband who has been very supportive emotionally and physically. He definitely see’s my character and therefore overlooks my body flaws. I do have to remind myself that he finds me sexy and attractive and wants me. It sounds like many of you have the same support so please keep that in mind and stay in communication when you do have flare ups. Tell them what will make you comfortable when being intimate. And those seeking a partner, a good one is out there and will see the true you and will embrace your condition. My brother has it too and is happy with his new girlfriend.

    1. Thank you for sharing. I LOVE that you found someone who is supportive emotionally AND physically. Communication is key. Many of our advocates have written about this topic: https://hsdisease.com/living/navigate-bedroom. Warmly, Elizabeth (HSdisease.com team member)

  2. My partner is afraid of being intimate with me because he's afraid he's going to make it worse, or create an infection. It's really disheartening being the one with the condition and trying to initiate any type of intimacy and being turned down. It makes me feel unattractive, and unwanted.

    1. your feelings are very valid. I really appreciate you being vulnerable enough to share this in this space. I remember speaking to a therapist who specializes in treating HS patient's mental health and also helping us to understand and embrace our sexual sides. She said talking to our partners about what we want, how we want it, and where we want to be touched can provide some relief. Have you tried this before?

    2. Yeah, I have, but honestly I think the fear that stemmed from the Pandemic kind of manifested into a lot of intimacy issues with him. I'm kind of hoping that these issues *magically* go away once the Pandemic ends, but I'm aware that these actions (or inactions, really) have more than likely created more deep rooted issues. He has made it known that he does not want to go to couples therapy, so for now it's a waiting game.

  3. I haven't been sexually active since I was 28 years old. I am now 38 and looking to meet someone. I did the surgery in my armpits but now my groin area is a mess and my worry is that a man won't find it appealing to sleep with me in the future. I think that is what has kept me pushing men away because I feel they will be repulsed by my groin area.

    1. I so share this with you! I just can't imagine someone else finding pleasure from my body thus making it hard for me to give into finding pleasure from theirs. It's really disheartening. Something that has been helping me is just visualizing what type of experience I would want. What would my sexual partner say? How would I want them to affirm me? Even if it's not true yet I feel like visualizing helps to attract the energy I truly want.

  4. Absolutely. It can be hard to have to say no to my partner when I'm flaring, it makes me feel inadequate as a partner sometimes. He's always so nice about it but it still makes me feel guilty!

    1. You definitely deserve to feel adequate and I really wish we could change the part of our brains that ties what happens to us physically to our self-worth. It's so damaging at times. However, I am so glad you have a partner who supports you through this at every level. <3

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