Help! My fiance suffers from this and is embarrassed to talk to me

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I've just recently learned more about this condition because my fiance has it and it is really taking a toll on our relationship. He is embarrassed to talk to me about it - and shuts down. He says he gets sores in his groin area and thighs and that he has been to the doctor and they said there isnt much he can do. I don't think he has been to a dermatologist and I feel like he really hasn't done much to fully get the details on this condition. It is getting to the point where he doesn't want to get intimate and just blames his breakouts but he doesn't do anything to try and resolve it. I know that he breaks them and drains them because he tells me but from what I am reading this is not the proper thing to do. I want to help him but it's such a sensitive subject. I want to go with him to a doctor and search for treament and answers but I just don't know how to bring it up without him getting embarrassed and shutting down. Any recommendations I love him to death and want to help - I would never make him feel bad, or leave him or anything of that nature I just feel there is more he can do...

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  • Posted

    Hey sorry to hear that he's has HS. It is very embarrassing to share and it can be very painful. I resently had surgery that helped a lot. I also had squamous cell carcinoma in the same area. Resently th e FDA aproved humira for the treatment of HS. I haven't considered this personal I have very mild HS in most areas. I take antibiotics daily and also us antibiotic gel the doctor gave me. He said I will be on these for the rest of my life. What works for one person don't work for another person HS is tricky and some of the treatments make you feel worse. HS has no cure unfortunately. I wasn't willing to discuss it with anyone until I was ready. Don't try to force him just support him.
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    • Posted

      I want to clear up what I mean by I'm on antibiotics daily. I don't take them for infection as HS is not caused by infection and is not contagious. I take themail due to the inflammation you get from HS th e antibiotics I take helps reduce this and I have fewer flair ups and when I do they are much smaller. I stopped taking them once and with in days notice the difference. I have little to no side effects personally so this is my choice treatment. I in no way want to imply that it's and infection or contagious in anyway. Antibiotics don't work for everyone as each person is different. Going to a doctor and discussing medical options and picking one you are comfortable with trying is important and a individual choice. I've had HS for over 30 years and hide it form everyone until recently. It's been embarrassing and until I was ready to openly face it head on I wasn't ready.
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  • Posted

    Hi it is very difficult if he won't talk about it,  but I can say that bursting and draining them himself can lead to more infection and further damage his skin.  I know he doesn't want to know but he needs to stop doing this.  When he gets a breakout and it is infected he needs ab's to cure it. 

    He also needs to get referred by his doctor to a dermatologist for a firm diagnosis and the best treatment for it,  as doctors generally don't know much about it.  x

     

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  • Posted

    First of all, thank you for having such an open mind and being so accepting of your partner, flaws and all. I can only imagine how frustrating it is for you to have him constantly shut you out on this particular subject, especially when it's affecting not just your emotional intimacy, but your physical intimacy as well.

    HS is like a wrecking ball on a person's self-esteem. And sharing it with your family and friends, especially someone you're intimate with is probably one of the hardest things for us to do. If it makes you feel any better, the fact that he's shutting you out, actually means he really, really cares. I know that's bass ackwards, but it's true.

    All I can say is just be patient with him. My husband was so patient and accepting with me from the very beginning, but it took time for me to open up to him about everything. And when I say time, I mean years. It was a step-by-step process. I think it took about a year before I let him come with me to a doctor's appointment after I told him about the HS. And as far as personal intimacy goes, it was a looong time before I let him turn the lights on when we did the horizontal hula. Baby steps smile

    As far as him being unwilling to see a specialist, that's a mixture of fear and ignorance. HS is a lifelong condition and even though it's possible to put it into remission it takes a lot of time and effort to figure out what your triggers are and unfortunately is a progressive disease that gets worse over time. Nobody wants to hear that. And he may not understand that he has options, especially if he's been self-treating (which you're right in thinking is not a good idea, that's how infections and scarring happen). Family doctors don't always refer these kinds of things out, and most have no idea what HS is, which is why so many of us go undiagnosed for so long. If his doctor has tried to refer him to a dermatologist and your fiance is just being a stubborn idiot, then there's not much you can do. I don't know him, so I don't know how to advise you to persuade him other than letting him know that despite the fact that there's no cure-all, there are ways to control it and help with the pain. If you see a dermatologist or have a friend or family member that sees a dermatologist that they like, you can give him that particular doctor's name and contact info and let him know that so-and-so has seen them and trusts them. Having a personal connection might help ease him into the idea of seeing a specialist. But he's the one who has to make the decision.

    As far as your physical intimacy goes, again be patient with him. Before I put my HS into remission, there were times when I had to beg off going on a midnight jockey ride just because the pain was horrible, and if it's in his groin that could definitely be a contributing factor.

    Just keep loving him and really listen to whatever he does tell you. Make sure he knows that you still find him attractive and that you're going to stick around no matter what because it sounds like you're in this for the long haul. Unfortunately, unless and until he decides to accept his condition and deal with it head on, there's not much you can do besides being his cheerleader. I know that's probably not the answer you wanted, but pushing him will probably just make him withdraw even more. At the moment, listening and acceptance are more valuable to him than advice. Good luck!

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  • Posted

    1st of all antibioticsa DO NOT CURE IT as I read in a response, HS is not an infection..so so many of us who have suffered me being 30 years now have had to needle and get rid of some when possible, but it is a horrible thing to live with and I understand his frustration...i love that your so supportive...wink..and im sure hes in the middle of a flare if he doesnt or cant be intimate...;(..been there...i dont know if he is on FB but there is a support group for HS that i recently found that has helped to talk with others that have the same thing, also..he really should relize that finally Dr's are recognizing this disease and things are starting to help...the diet WOW...look into nighshades, have him stay away from those foods...and if you google specialists for HS you may be able to find one in your area, I finally did and will begin Humira shots soon which have sent many into remission from it....after 30 years of pain every month or every other you tend to want to try anything!...I will pray for both of you...just support him and offer him the tools you may find to better manage this thing
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    • Posted

      Hi that was me that said use ab's.   When mine are a problem they become red,  infected and really painful.    This is an infection so I use ab's and they clear the infection and usually all of the stuff inside. 

      Using a needle can lead to more infection,  leaves more scarring,  and further damges the lower level of the skin.   This is a fact.  x

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