Hi there, I have also just recently been diagnosed, despite having flare ups periodically over the past 7-8 years (also since I was around 18-19). My spots are always between the cheeks, varying in proximity to my anus. I was actually only diagnosed because I had a significant, severe flare up which ruptured and caused excruciating pain. I couldn't sit, couldn't stand, couldn't walk... My doctor looked and said there was a large sore, and referred me to a anal/colon specialist. He diagnosed me and gave me antibiotics called Flagyl to take for 6 weeks. I thought it was fully cleared up, the antibiotics were finished two weeks ago, and BAM. New spot. "Fortunately" my appointment was rescheduled by them from Nov 1 to Nov 21, so instead of going in "all better", I'll be going in with a new spot for him to look at. At least this one hasn't ruptured.

I wish I had advice for the physical and emotional pain. The specialist I saw said I could take advil and tylenol for pain, and to take hot baths. Not the best suggestions in my opinion. Just keeping writing, share how you feel, get advise from others.

Your pain is real, despite what others may think and say. Your experience is valid, don't ever let anyone tell you otherwise.

Hi there, I have also just recently been diagnosed, despite having flare ups periodically over the past 7-8 years (also since I was around 18-19). My spots are always between the cheeks, varying in proximity to my anus. I was actually only diagnosed because I had a significant, severe flare up which ruptured and caused excruciating pain. I couldn't sit, couldn't stand, couldn't walk... My doctor looked and said there was a large sore, and referred me to a anal/colon specialist. He diagnosed me and gave me antibiotics called Flagyl to take for 6 weeks. I thought it was fully cleared up, the antibiotics were finished two weeks ago, and BAM. New spot. "Fortunately" my appointment was rescheduled by them from Nov 1 to Nov 21, so instead of going in "all better", I'll be going in with a new spot for him to look at. At least this one hasn't ruptured.

I wish I had advice for the physical and emotional pain. The specialist I saw said I could take advil and tylenol for pain, and to take hot baths. Not the best suggestions in my opinion. Just keeping writing, share how you feel, get advise from others.

Your pain is real, despite what others may think and say. Your experience is valid, don't ever let anyone tell you otherwise.

Thank you for your response it’s comforting hearing other people struggle with this to and I’m not alone. Currently having a flare up and it’s been painful to walk going to keep trying natural remedies to ease this pain.

OMG. I feel your pain. I am 35 and I have been suffering with HS since I was 18. I only get them in my groin area and its very painful and depressing. I have been taking antibiotics (flagyll, doxycycline, minocycline, etc.. I've had them all) for years and they don't seem to work for me, and i'm tired of the side effects from them so I have stopped taking them. My doctor recommended me to take Humira but after I researched it and saw all of the side effects I decided not to get it. Other people who don't suffer with HS always think its not a big deal, because they don't have to suffer like we do and they don't know what it feels like!!! I'm dealing with a flare up right now and its killing me!!! Someone in this group told me about a soap that I just recently started using (Mysore Sansal Soap) so I'm giving it some time to see if it helps any with my flare ups! I come to this site to get any tips and advice that I can try, because having this condition is very stressful for me! I'm sorry that we have to deal with this

It’s very stressful and everyone does seem to brush off our pain they just don’t understand they think it’s like having acne or ingrown hairs. I like trying natural remedies and so far silver soap has worked good for me also, drinking apple cider vinegar every morning someone told me to do that to help detox my lymphatic system and so far my flare ups have went down drastically. I’m at a point where I’ll try anything so I hope my advice helps.! I’ll have to look into the Mysore sansal soap.

Thanks. I'm gonna try the apple cider vinegar and silver soap. I'm willing to try anything at this point!! And also I misspelled in my other comment. Its Mysore Sandal soap. Thanks again. Just know that you are not alone!!!

Thank you stay strong

From what I've read, the antibiotics are the first thing the doctor will attempt to treat HS with. After that is Humira which is more scary to me than getting surgery. The medical literature I've read basically all conclude that the best treatment for long-term remission is surgical removal of the fistula (lumps or sores) under the skin. Every other treatment is a big *maybe*. If you like to know your stuff before you visit a doctor check this out:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5156664/

Thank you for the article I was very informative, just a update I’ve been a month without a flare up I feel pretty good stress has a lot to do with it ! I hope everyone is doing ok also.

I’ve had HS for the last 20 years buttocks, waist, inner thighs and armpits are my most affected areas. This is what I’ve learned over the years. When I was younger my HS wasn’t that bad I stopped smoking for a about a year and had no outbreaks. I started smoking again and the flare ups started again. As the years went on I was diagnosed with type 2 diabetes, and my HS got way worse. I could have up to 20 boils, and the new ones were popping up faster then the old ones could heal. It was a lot to deal with. I started to apply hydrogen peroxide to body before showering, and using acne wash for soap. I used both benzoyl peroxide and salyctic acid. I found the salyctic acid works better. After showering I would use an anti fungal foot spray on all my problem areas. I would atleast shower once a day using this technique, but most days I would shower twice. I found using this technique I could control outbreaks, and if I did get a boil it would be a really small one. However as soon as I stopped using the washing technique I would immediately flare up. I decided to do something about my diabetes and started doing the keto diet. While on keto I had no flare ups. However keto is a tough diet to stay on. As soon as I stopped keto it flared up again. I am no expert on HS but from my personal experience quitting smoking helps, hydrogen peroxide, acne wash, and anti-fungal foot spray helps, and the keto diet helps

I was diagnosed recently and just had wide excision surgery. This disease is awful and I am 43 and know nothing about it. I am going to try that my sore sandal soap and diet changes. I’ve been out of work for 3 weeks unpaid and the doctor bills are out of control. I feel you.. I am lost too. At least we aren’t alone!