Hidradenitis suppurativa

Did you go for surgery?Did it not help?

I had a thick cyst on my neck that broke open like the sores and got bigger and bigger till it was the size of a lemon. I'm not completely sure if it was part of the HS or just a huge cyst but I did have that surgically removed from the dermatologist and he promised me that he was good at it and no one had gotten a cyst like that back again that he had removed and so far so good ... it hasn't returned. But I really think it wasn't in the HS family but just a sebaceous cyst. The only surgery that is out there to remove all the sores is to remove the sweat glands. But the dermatologist refused to do that because it opens you up to cancer. So I ruled out surgery for the HS. I have to say though that by the time I knew what it was that I had ... I was in stage 3 of the disease ... way past the time when much at all can help. I have tunnels under the skin and places where I've had sores on top of sores and my groin area and arm pits are a disaster area. I can't wear tops without sleeves ... but short sleeves do cover it. No tank tops or anything like that and I can't stand layering because it just makes me more hot.

Hi everyone,
I have been dealing with HS for about 17 years now. Fortunately, I only have it in my armpits. I believe this is because I have been taking turmeric with curcumin for the last 10 years roughly and it has helped this disease to not progress as dar as well as helped tamed down the flares. However, in the last year I have begun have far more frequent flares. I began taking zinc gluconate and continued with my turmeric as well as taking a b complex supplement. I have changed dosage around numerous times and believe I have got it close to where i need to be to get these flares to stop. I take 2 1300mg turneric with curcumin, 1 50mg zinc gluconate, and 1 b complex vitamin every morning after breakfast and then 2 1300mg turmeric with curcumin and 1 50mg zinc gluconate at night b4 bed with a snack. I have also stopped eating gluten, refined sugar, soy, wheat and grains, nightshade vegetables, and dairy. These are all inflammatory foods. Once the remission lasts a while longer i may attempt to add a couple things back in but for now this seems to be working. Look into AIP Keto. I have also in the last couple years started experiencing a lot of inflammatory arthritis during flares, which has gotten sever in the last 6 months which is another reason for the diet change. I have noticed what seems to be a possible link between HS and RA and am going to he tested for it soon. Long story short...try turmeric with curcumin, zinc, b vitamin combination along with aip keto and see how it goes...its working for me! Also, look into doing an elimination diet if aip keto is too restrictive so you can better pinpoint what your triggers are. I hope this helps!

Has anyone who was disillusioned with their doctor's treatment sought treatment for this condition at Mayo? Did Mayo help you? Thanks in advance!

Hi @oram, There are a lot of members that have discussed Hidradenitis here in this conversation where I have moved your post. I hope this helps you to connect with some of the members.

Also, here is some information from Mayo on the diagnosis so you can see what their take on the condition is.
https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/diagnosis-treatment/drc-20352311

Have you called Mayo at all to talk about a possible appointment?