HS Pain, itching and going nuts!
Hi Im 42, married with 2 girls, I 1st felt a bump under my armpit and went to the doctor. I was told it was HS because of other bumps on my bikini area. After 3 months of cutting sugar, cutting carbs, avoiding heat as much as you can in florida, antibiotics, soaps, tumeric, honey, jelly, figuring out how to deal with pain, trying to minimize stress (not working at all) I am exhausted. Have more than 30 lesion in each arm, almost the same between the legs and the butt area. Under my breast. My neck even my scalp itches. I feel my body is dying on me and dermatologist just recommended google for solutions to help with symptoms. Aside from the discomfort, the pain, how it affects al aspects of life the itch I feel you loose a bit of yourself. I would like to know how you coupe well with this. Dont get me wrong, i know what pain is, i ve had 5 miscarriages, suffer from allergy breakouts all my life but this, specially the continuity factor, the no cure status its draining me. Any help to manage this better its appreciated. I just dont seem to think clearly anymore, I just want to be in the shower or putting baby ointment all over.
Hi Tammy, I feel your pain. What helps me is talking epsom salt baths with a drop or two of tea tree oil ( very little because it can burn a little) I put a little Vicks vapor rub under my arms and it seems to cool down the spots. Again use a little so u can see if it will work for u. I love cool pads as well to put on my itchy, sore spots. Try as many things as you can from others who suffer from HS, I’ve been dealing with it for almost 25yrs. I’m getting close to remission with a change in my eating habits. You will come up with something that will work for your body. Everyone is different, try the cool pads, that helps me almost instantly. Doctors can be frustrating. I saw my dermatologist last month for a checkup. He's had me on Humira for a year and less than a minute in to our most recent meeting he asks if ive ever heard of Dial soap.
Im thinking yes, because im a human being and who hasnt heard of it? & Yes, cuz i have hidradenitis but mostly yes because you and i talked about using it the first time i saw him.
So from then on I'm questioning what does he remember? I'm giving him detailed verbal hypographic maps of my butt for a year describing where it swells, where it weeps and where it hurts thinking he's with me in tracking this down on a macro level and getting rid of it. Meanwhile he doesnt remember talking to me about Dial soap...again. Makes you feel alone.
But he did for the first time offer to drain painful flares. Ive never done that. Always just dealt with the pain, no mattwr how crazy.
My last flare got so bad for the 2 days before it popped that I promised myself id call an ambulance if it still hurt that bad in the morning.
The only time i wasn't in massive pain was while soaking in a hot bath taking 6 advil every other hour. I was in the bath in the middle of the night cuz i couldnt bare laying in bed anymore. I slipped trying to get out. Mind you i could barely move cuz it hurt so much. This flare was like the amount and consistentcy of fluid youd find in a new small can of paint that was trapped in about a 2 square inches of space between my scrotum and anus.
When i slipped getting out of the tub the abrupt movement to catch myself on the shower curtain caused a small rupture. I didnt notice it. It hurt so bad still, i was wet already and it was dark. When i got to bed i fell asleep and woke up an hour later laying on my side, something i couldnt do prior for days becauseof the pain. After not comfortably sleeping for days i wasnt asking questions so i just stayed in that position for another couple hours til i had to get up for the day.
I woke up immediately knowing that an incident had happened because i had slept on my side and because i fould feel some dry puss on my leg. I was trying clean as much up as i could without moving and ID where the rupture was Then i discovered this very thick, rubbery substance. Ive never had dry puss like that come out of me. It looked like what you'd expect to see on a tissue if you had a bad sinus infection.
When i went to pull this little rubbery pebble of puss off my skin i noticed it was stuck right in the center of an old pock mark that was now in the eye of this new storm. All i did was slighlty pull it and it was like releasing the drain on a bathtub.
Instantly i felt relief as a very hot thick liquid came rushing out and then kept coming and coming and coming and coming out of 2 small holes in my groin under no pressure outside the beating of my heart. I then went to the bathroom and applied some slight pressure and about half as much fluid came out in the form of black almost licorice stick looking ropes of blood clots came out.
I then noticed that on the side of the tub what under normal circustances id call big drops of puss and blood had dripped down. Thats when i realized my tub slip caused the rupture.
This disease sux. Ive been on Humira for a year and still...im not overweight. I quit smoking. I do eat like shit. Im also a man if the scrotum comment didn't warn you. Ive had it for 18 years. Im 38. Other than one large and a couple small flares inder my left arm a decade ago, ive had it primarily in my butt and groin area only.
I went back to college and then was in my first year of law school when it got really bad, eventually causing me to quit. So i guess other than diet, stress is a huge contributing factor. I literally could feel one filing up during an exam once. And people? They dont care. Even doctors
Wow, I think I felt every moment of that lesion flare up. The amount of bargaining we go through (not to mention supplies, medications, doctor visits, ER visits, and expletives) I don't think can be compared to any other disease. It's really difficult to explain the pain to anyone who doesn't experience it. I think one of the phrases I hear most often is, "Why can't you just...?"
You bring up two important triggers, which are stress and diet. Personally I think they actually round down to hormones. We have a lot of hormones in our food (at least, here in the U.S., I'm not certain that is where you are located), and stress messes with the dozens of hormones that are circulating in our bodies. We also have chemicals that mimic hormones, such as pesticides and herbicides, and BPAs in plastic. Maybe we would have an easier time if we could switch to a much cleaner diet. But boy, is that ever expensive and time-consuming. And we could maybe control our stress a little better if we didn't have these lesions popping up.
Thanks so much for sharing what is a very personal perspective. You are not alone, that is for sure. ~Chelsea (Team Member)
I feel your concerns. I have moments when I’m so tired of thinking of other ways to stop this ridiculous continuous pain I have to live with and knowing there is no cure. I recently had surgery underarm (right) and had them remove ALL damaged skin, take out the tunnels that were infected. Took two surgeries and two months off work, but must say I’m excited to see and experience no more HS pain in that arm. Fingers crossed! I need to wait a few more months until I can get my left underarm done. Although yes I have HS lesions in my bikini area, butt, and under my breasts… I’m experiencing overall less pain. Wearing no underwear or underwire bras while at home have helped as there is no pressure by wearing them against my sensitive skin. I wish you the best, stay strong. 
I understand the pain you feel when flares sting, burn, and itch. Even though I know I shouldn't scratch, the flares sometimes drive me crazy. My doctor has never recommended I do a Google search for HS treatment options. Dermatologists specialize in skin conditions and can offer you treatment options. Well, I'm glad you're here because now you can get the help and resources that lead you to a qualified dermatologist.
