Yu have to be brutally honest with relationships; Chronic disease takes its toll with relationships; honesty is the best policy and I would tell him up front that you have a disease process and that is part of your life that will NEVER go away ....... if he loves you like he says he does he will stick around..if he flies like a bird he was not worth keeping...Tangerinebear xo

I thank you for your quick response. I know you are right. I think it's the mixture of shame and courage to have this conversation that brings tears to my eyes. I feel like this man deserves someone who is perfect, no a diseased ogre.. :(

You are not an ogre first off, You have a skin condition that can some times be very painful and very ugly looking. But if he loves you he will have to love you bumps and all. I have the worlds best husband, when we first got together I explained that I have a skin issue in my groin that is not contagious but doesn't look very nice. He was super understanding and was more worried about my comfort when we are intimate, because he loves me, bumps and all. As for the going down part I find that he wants to do that for himself more than I want him to, and I would not want to stop him from something he enjoys, I just use my hands to cover up the bumps and I enjoy the experience. Well sorry I got a little graphic but with this disease I find it's best to do what works for you and in this case your partner. Good Luck. :)

I have been so blessed with amazing fiance...he completely understands and when I can't leave bed at times he takes care of me..iv been dealing with HS for about 8years just diagnosed 2 years ago..when I first met him I was very ashamed of my HS and the MANY scars it has caused all over me..before we became intimate I had to "bite the bullet" as they say and just tell him his reaction was the best iv ever gotten when telling anyone..he hugged me as I explain what HS is and why I'm full of bad scars...I Reilly believe that you have to educate him..if he loves u he WILL understand..stay strong everything will work out..your not alone....

I have never let hs hold me back in a relationship...beefier me and my husband started being intimate I told him that I have a condition, disease d did and still does sound so scary to me, that affected my sweat glands and it caused me to have these bumps and they can sometimes leave scars, he actually told me that his step mom suffered from the same thing and that he had seen her under arms and that made me feel so much better!!!! I remember the first time I got naked in front of him I was so nervous and he just kept telling me I was beautiful. :) he absolutely loves going down on me and I usually cover the,bumps with my fingers too bc they are on,my panty line. Heck he now checks healing progress and ect for me down there.....

I didn't develop HS until i was 10 years into my marriage, and if he wanted to, he could of said "Screw you and your disease, I need a real body." but he DIDN'T. That's the point. If he truly loves you, he won't care not now, or not later. Be honest with him...give him a flashlight if you must! Mine are located in both sides of my groin, buttocks and inner and out labia, so imagine how disgusting that can be....I am constantly draining, leaking or bleeding...So please don't be ashamed...I have been married for 15 years with this horrid disease and the love of my life by my side.

Thank you all for your comments. In the one short day and a few comments from fellow suffers have given me the strength and courage that I needed to have this conversation. I appreciate all your kind words and love

I know how you feel. I'm in a new relationship and I'm afraid to tell him. I just had a talk about it with my friend whose been there with me since this whole HS thing started with me. She's the only person besides my mom and doctors who's actually seen it and helps patch me up when I can't reach. She's like my sister. She told me if he can't accept me for who I am I don't need him and there are other fish in the sea. Truth is I don't want any other fish. I like the one I have. He's an amazing guy who treats me like I'm the most important girl in the world. Now that he wants to get intimate I don't know what to do with myself. I want to but I truly believe in being honest in a relationship. I'm a pretty confident person except when it comes to naked time. I really have to trust the person I'm with and I really want to be with this person and I don't want to freak him out and scare him off. I never tell anyone what I have. I just say I have "something" and leave it at that so they can't look it up and look at me differently. With him I feel like I need to be 100% honest because I feel like I'm done with anyone else.

Its the telling what I have, not the telling him I have something that scares me the most if that makes sense.

I feel you!!! I hate saying disease! I am a healthy person but admitting I have a "disease" is emotionally debilitating. I KNOW my man has seen my underarms and groin area. I used to tell my ex boyfriends I had severely sensitive skin, and I would react to certain materials and sensitive to sweat. But I know I can't lie if I expect to be in a healthy relationship :/ Guess it's time to drop my lady balls lol. Good luck to you mama! We can do this!! p.s your gorgeous! :)

i know exactly what you mean about oral. i don't have a very bad case of hs, but that is the one thing that i am very self concious about. i only let my boyfriend do that to me on occasion because the scars and lumps are just so unattractive. i always tried to keep the room dark when we were intimate, and avoided it at all with previous relationships. if he is right for you, he should be open to you letting go of shame. don't be ashamed! you are certainly not an ogre:)

a good thing to do is print things on hs to help with explaing to your love one let them read about it then they can get informed after you let them know

@ heldback.I feel your pain,emotionally & physically.I was diagnosed at 17,now 39 (22 yrs).I will be completely honest with you.I lost my virginity at 17,before i had H.S. Then never had sex again till i was 34! All those years i was battling with self image,dealing with untold amounts of physical pain & at one point was even bed bound for months do to it.Point saying:i do still have a few problems battling with letting my H.S. be known to my relationship partners.I have been dating a great man who could care less about my skin,when its my heart he is after.In the past,yes i hid it cause it was embarressing! I also make sure its "lights out" during love making & i just make sure he isnt somewhere on my body that my condition might be flairing up.EVERYONE has "something" physically they wish they didnt have! Be ashed of it NO MORE!!!! I have gotten over most of my embarressment of H.S.Remember this: its not about your outer beauty,its your heart & soul that makes you lovable !!!!!!!!