I'm so sorry that you have to deal with this disease, and even more sorry that you've been dealing with it alone. I've always likened HS to an abusive boyfriend. It's isolating, it's a self-esteem killer, it drains your bank account, it controls where can go and what you can do, and you never know when it'll rear it's ugly head and kick your butt. For the what it's worth file, everyone here understands what you're going through.
Sad to hear nothing has worked for you so far, especially since you've been to see specialists. Unfortunately, no one really knows for sure what causes HS, and by that same token, no one knows how to cure it, so the "specialists" sometimes leave you with more questions than answers. My own GP spoke with three HS specialists and he got different answers out of all of them. Reassuring, right?
Not sure how much they explained to you about HS, so here's the deal. It's an autoimmune disease, your immune system is literally attacking your apocrine glands. The antiobiotics work to a degree because they are powerful anti-inflammatories. There can be some pretty nasty side-effects because antibiotics were never meant to be taken long-term. They also only work for about 3-18 months, depending on the person. Your body becomes acclimated to the drug and it loses its potency over time. It can be a good short-term solution for some people, but like I said the side-effects can be pretty ugly. Taking an antibiotic for 10 days is a lot different than taking it for 6 months. I especially hate it when the doctor hands you the perscription, tells you to take it for x amount of time, but doesn't explain the lovely side-effects that can and do occur.
I would really recommend trying to find a trigger. For some people like Kaymate, and me, it's diet. Nightshade vegetables are a definite trigger for me. Other common food triggers are gluten and nuts, but it could be anything. The only way to know for sure is to do an elimination diet (look up autoimmune protocol) and then slowly reintroduce the foods you've eliminated back into your diet and track your symptoms (I use a food diary, it's the best thing ever). LIke Kaymate, I was very skeptical before I did it, my mom's a nurse so I was raised to worship at the altar of western medicine, but I was desperate for any relief that didn't involve going under the knife again. I was at Stage 3 under my arms and in my groin/buttocks region. Now I'm in remission as long as I stay away from those foods. I will break out if I get into them.
Hormones also seem to be a common trigger. If your HS is affected by your period, then it's likely that at least one of your triggers is hormones. If this is the case, I would recommend being evaluted for a hormonal imbalance to see which birth control pill would benefit you the most.
Like the others said, loose-fitting, natural fabrics only. Also, if you're using anti-perspirant, stop, right now. Seriously. Deodorant only. I use Sydelle's sensitive skin deodorant, other HSers have sworn by Crystal Deodorant, and I know Doterra makes a natural deodorant as well. Just keep trying everything until you find one that works, if you haven't already.
If you can't find a trigger, there are other things you can try. I am a big believer in trial and error. And if it won't hurt you, try it.
A lot of people with HS take a combination of Turmeric and Zinc. Turmeric (or curcumin) is a natural anti-inflammatory, in fact, my mother worked as a nurse in a cardiologist's office for years and they would recommend Turmeric supplements to their patients to help thin the blood. Zinc is great for the immune system and helps it figure out what it's supposed to be doing. You do need to take turmeric with protein to help the absorption rate and it can take a few months before you really start to see results. I tried it before I did my diet and had mixed results. If my diet hadn't worked, I'd probably still be taking it though.
Biologics, like Humira, have had some success in reducing HS outbreaks and their severity. I'm sure the specialists you saw probably talked to you about this. I'd chalk this one up to a last resort. If you can't find your trigger, and there's literally nothing else for you to try besides surgery, I'd recommend sitting down with your doctor getting all the information you can, and then make a decision as to whether or not the benefits outweight the risks. Sometimes they do.
Everyone reacts to treatment differently, so you're going to have to keep trying different things to find something that works. It is absolutely possible to put your HS into remission, do not give up hope. If you don't have one already, find a doctor that not only understands what you're going through with HS, but is willing to listen and keep an open-mind about treatments. It took me years to find a doctor that supported me, you should've seen the look on my old dermatologist's face when I told him that I wanted to try an elimination diet. A diet. This is also the guy that recommended I take bleach baths twice a week, shot me up with a steroid injection in my arms and groin (all I can say is ouch) three times a year, cut into me with a scalpel more times than I can count, gave me creams to use that were known to cause problems worse than HS, ie liver damage and death. And his final recommendation to me was to have a procedure that would remove the sweat glands in my arms, groin and buttocks entirely and leave me in excruciating pain for months. Yet for some reason he balked at the idea of a diet. Still can't believe he was looking at me like I was the weirdo.
When I went to see my current GP, he had no idea what HS was at first, but he did confirm that there is a link between autoimmune diseases and our diets. He made sure I saw a nutritionist to ensure that I would get all the vitamins and minerals I needed during the duration of the diet. He did tell me, he had no idea if the diet would work, but that he was open to anything that would make me feel better as long as it didn't cause any damage in the process. First doctor that has ever told me that.
This forum is great for support, but it would be even better if you had a support system in your own personal life as well. Is there a family member, or a friend you can talk to about this? Someone you can call when you're having a really bad HS day and just need to vent? It can be hard to tell people about HS, but having a support system is so important in dealing with this disease.