Trying to hold it together

Hey Mam. as i always said. 1) Concern your doctor., 2) research about hs on google. 3) read the comments of other patients, how they relief them selfs. Search about diet. I am also facing this last 5 years. and believe me patients ideas are little bit helpfull for me of this page. so dont loose hope. be a fighter. Stay positive. God bless you 😇

i know what you mean by wondering if you can cut the areas out has went through my mind lots of times it is a soul destroying illness i have it on my waist line both underarms both sides of groin and breastline also

Same problem with me. I am a delivery man on my feet and in and out of the back of my truck all day. I used to rap both my upper thighs with ace bandage, which helped a lot just wasn't easy keeping them in place all day. A dermatologist put me on Humira about three months ago, and I have to say I'm 60 to 70 percent better. Works wonders for me . Give it a try.

I think we all know this depression you have. It's like we are in our own private hell. Fortunately there IS help. Figure out your triggers by going on a paleo diet that cut out nightshades, also try taking cheap 70mg zinc gluconate pills. My HS is in remission because of them. Read this forum. Stay strong, you can beat this. I am stage 3 for the last five years, and only found relief the past year and a half. I have this disease for 20+ years. Being permenantly in pain is terrible, but it does not have to be this way. Stay Strong!

Hi.  I've had severe HS for only the last two years or so, but now that I know what it was like in its early stages, I can say I had it in my 20s-40s also.  But no one gave it a name until it got more severe...which interestingly coincides with when I developed type-II diabetes.  No one seems to know if there is a true correlation between the two, I guess because no one knows a whole lot about HS.

I just wanted to reach out and say I understand the pain and the desire to make it go AWAY!  Not that surgery is the option for everyone but, have you discussed this with your doctor?  I had one armpit done a year ago, and no sign of HS at all at the surgical site.  I'm about to get another surgery done for my other armpit and my right groin.  Like I said, surgery isn't for everyone, but it worked out well for me.

Hang in there.

I just posted about feeling exactly like this. I don't know how to get through the day, the hour, the min. I hope you find yourself some relief soon! *tight hugs*

Unfortunately there is no cure, and nobody knows what causes the disease.

It seems there are different causes for different people and so different remedy for different people.

The first thing is, sorry to say, there is no cure.

Keep a diary, long term, of your symptoms, what treatments you try, whether they give any relief, and any side affects.

Do not expect any dr or dermatologist to be an expert and know all the possible remedies, as there are none.

Educate yourself about your disability( and if you have stage 3 it is now starting to be recognised as a disability- even if you have one lump in an inconvenient place it can be ridiculously disabling and distressing, physically and emotionally ), know their are many others who suffer Like you. When I first started to read up on my condition 10 years ago the estimates were that it affected 1 in 100, newer estimates put it at 1 in 4.

Many people have a food trigger, so if you can work through that option with a dietician, or read up online do it yourself and monitor the effects. Paleo, gluten free, avoiding nightshades, world be places to start.

For most it has nothing to do with obesity, smoking ( tobacco is a nightshade), or hygiene, but we do tend to be extra sterile and health and fitness won't hurt.

For hygiene, I tried some products that turned out to be to harsh, and most fancy washes or beauty products also, for me mild hydrogen peroxide is a two or three times daily routine.

Laser hair removal is meant to help some people, and depending on cost be worth a try. Why not try shaving the area first and see if it helps? I do this, very carefully, sometimes when mine is bad and see some minor improvement.

Surgery in the form of lance and pack seems to make most people worse in the long term, but sometimes you've got to do it for stubborn long term legions. Before that maybe try kenalog(steroid) injections if you have a painful lingering lesion.

There is a lot of literature freely available online, including the actual studies and results, and thankfully there seems to be more frequent studies than before.

So try what is being recommended, but keep your diary, different Drs will recommend different things.... And sometimes you may have to be the one telling them NO, that does not work for my condition, or NO I have already tried that.Try and avoid anti biotics... They're over prescribed and generally don't work.

I'm currently 2/3 of the way through a 3 month clindamycin rifampicin combination which is one of the more proven treatments, however this is for Hurley stage 3, and the side effects of kidney and joint pains are sometimes unbearable. It's also made the condition WORSE for the first 7 weeks but seems to be helping now.

If this doesn't work for me then next would be the laser hair removal, followed by humira ( if there is a generic version available as it is quite expensive) although the side effects are meant to be quite bad, and last resort would be surgery for gland removal.

You should probably get checked for any of the related conditions, Crohns, IBD Etc... To be safe.

It can be a long journey, but you will find what helps you manage it,

Don't squeeze them, whatever you do.. This pushes the infection deeper into the gland and you will end up with interconnected fistures (i have hot needled a few before when travelling with no medical access and I think this did make them worse longer term, but the immediate relief was worth it) , be extra hygienic.... (Again Hygiene does but cause them, but once there is an infection, treat it like any other wound or infection and be extra sterile), live a fit and healthy life and diet, work your way through the recommended meds, study your disability and become an expert...GP's study for 7 years and need to know millions of ailments and diseases, you have one body, one ailment(we hope) and one that is often misunderstood or that many GP's are ignorant of.

I hope your journey is short and you find what works for you soon.

I feel your pain because your situation sounds alot like mine. My advice is get a doctor who specializes in this. I'm in deep south Texas and I go all the way to Miami, Florida  for my doctor. Dr. Resnik, give him a call. He has the best staff. Maybe they can help.

I call my walk the orangutan! John Wayne is perfect. I have no creams and only antibiotics. I need more help.