Though I can't really offer any advice on what you can do I can lend an ear and tell you that you are not alone! I have not been officially diagnosed with this, but I have been researching like crazy and I am convinced based on the symptoms and the breakouts that this is what I have. I actually just found this support group today so I am hoping to find some advice also. I also have trouble with intimacy with my husband because of this. Its painful and so uncomfortable not to mention I feel less attractive. Even though he tells me other wise....It really is so hard to explain to someone who does not experience the breakouts and the huge soars on your body. I feel for you and my heart goes out to you!

For 3 almost 4 years i wouldn't show him uh there just couse i felt so ashamed and embarrassed, self-consiuse and ugly and gross. All my clothes rubs against them or if i move or shift they hurt, all i want to do is cry half the time. The doctor didnt even tell me anythinf about it. She was like its hs lool it up when you get home and its not curable. Its hell and thankyou

Abd the antibiotics they gave me are couseing me to throw up for like half an hour afterwords andbmy stomack and throat burn all day and my mouth tingles and taste gross

Finding this support group did so much for my self-esteem and mental state. There are a community of people right here going thru the same things and you shouldn't have to feel alone anymore. The chronic pain, social anxiety and depression that accompany this condition are tough. I've been in job interviews with bandages covering my inner thighs and just praying there's no leakage when I stood up. We all understand what you are going through!

I'm self diagnosed because doctors always made me feel ostracized and never provided answers. I just stopped going. I can't provide any insight on the antibiotics, surgery, etc. But over the past 3 years using trial and error I've found a management routine that works for me. Keep trying new things and hopefully you'll find something that works too. Start with benzyl peroxide 10% wash - it's been a game changer for me!

I am so sorry and feel bad for you. Looking at this and feeling it are two different things. I have the same story as you. I am stage 2-3 because it goes back and forth. If I get a week from it, I feel wonderful and hopeful only for the next week to have three or more to comeback. I begged for surgery and the Dermatologist flat out said no. I feel so depressed because I don't know if this will over go away. My husband has been very supportive too, but feeling sexy is over. I don't wear jeans or tight clothes anymore, I wear boy short underwear which get thrown away often. I'm sure you can understand what I am talking about. No matter what I do, I never feel clean. I feel like the male doctors are not sensitive to me at all. I feel like I have cooties or something. I never even had a pimple in my life. I'm 50 now and I'm hoping that after menopause this goes away. I'll pray for you.

I had the same vomiting eposodes with erythromycin.... I will NEVER take that medication again. I usually ask for Keflex (cephalexin) or Bactrim (sulfamethoxazole and trimethoprim). I also had 2 surgeries: 1 successful and 1 unsuccessful.

Right there with everything posted already. My HS appears in my groin/private area too--very difficult to be intimate with your spouse not just from pain but embarrassment. Luckily, I have a very understanding husband.

Many antibiotics cause nausea and vomiting--call your doctor's office and let them know. They can prescribe some Zofran for you so you can keep the antibiotic down.

How do you live with HS? Just like you did before the diagnosis. All the while searching for your trigger so you can eliminate it. Like everyone has mentioned, I did the rounds of doctors, lancing, antibiotics, creams, antibiotics, special washes, etc all with very little effect. My belief was that if modern western medicine can't help me then nothing could and I was doomed to live a miserable existence. That spurred me on to look beyond what modern medicine knew (which I resisted for a long time). And I discovered that often HS flares are triggered by something (and its not clogged pores from poor washing). I found 2 websites that were instrumental in finding my trigger-Robb Wolf's Hidradenitis site & How Tara beat HS. A whole new way of looking at this disease was introduced that made much more sense than what the MDs were stating. And everyone's trigger is not the same--that's another component that makes HS so hard to treat. I tried the Auto Immune protocol (which is the same protocol gastroenterologists & allergists have patients do when they don't have a ready answer for a patient's symptoms) and found that my trigger was gluten. Other common HS triggers are dairy, eggs and nightshades (tomatoes, potatoes, eggplant, tobacco, etc). As long as I stay away from gluten, I'm HS flare free. On the rare occasion that I have a flare I can usually identify where the gluten sneaked in (ie. when we went to Mexico and the waiter assured me the scratchmade tortilla chips were corn and not flour-my body said differently).

Check out Robb & Tara's sites and see what you think. It costs you absolutely nothing to check out their sites and to do the AI protocol. The worst that can happen is everything stays the same (which is pretty depressing) but the best that can happen is you identify what causes your HS flares and can better control this disease.