I have HS. I've had it sense I was a teenager, it was mild considering what I'm going through now. I was hospitalized last year (2013) for a week because it ballooned to the size of a grapefruit on my left axilla. I went to the ER, it was sliced open and drained, I was treated, but it was the most pain I had ever felt due to HS.

I've been on so many different medication, the side effects made me feel ill and caused me to stop taking them in Dec. of 2013. Since then I treat it with ointments and steroids shot my dermatologist gives me until I figure out what I want to do next.

I've been to several doctors and surgeons and I don't feel 100% certain that they have my best interest at heart. I don't know that I want to have surgery, I was told that there are no guarantees, HS could resurface in other areas. I have HS on both axillas and it's severe.

This has been the hardest year I've faced. I've missed days of work, I can't fully enjoy life, be social, travel, my days are hindered by HS. I'm unhappiest the most at the beginning of my day when I have to look in my mirror and dress my wounds and the end of my day when I have to remove them. HS has put a damper on this usually positive, and loving person. I'm a different person because of it.

It's difficult for my friends and family to truly understand what I go through. It's most difficult for me to burden them. It breaks my heart to hear my 11 yr old niece ask, "Titi when is this going to go away?" the look on her face when she sees what this has done to me brings tears to my eyes. So I hide, I try to get dressed quick and alone. I'm the only one of my family members to have HS, just me, and I can't help but feel alone or depressed even.

I don't know what to do next. Should I try alternative medicine? Should I look for a surgeon I can trust? Or ... should I try a new medication? I'm really lost right now. I hope that there is someone out there who's reading this that can help me. I'm really at my wits end.

Pr1sC Pr1sC
36-40, F
7 Responses Aug 26, 2014

Sorry to hear of your experience. I once had one in my left groin grow to the size of a baseball so know the pain you were having. I have had HS since I was 16 years old and am now 57. I think with the size of your flare that surgery is your only option. I have tried everything under the sun for decades and nothing else worked. Draining it will only be temporary and it will be back. I had surgery when I was about your age. Both armpits and left groin (which required a skin graft). I was pain free and flare free up until about 4 years ago when I developed another small flare smack dab between my legs. It recently flared and now the entire right side of my groin is swollen with leakage and a 3-4 inch sinus track so going back to another Dr. tomorrow to consider yet another surgery. You need to find a good surgeon that has dealt with HS before. My first surgeon was great and was a plastic surgeon in with a dermatology office. He did a wonderful job. I have since moved and retired so going to a Dr. closer to where I now live, but if need be will go back to the 1st Dr. as he is still in practice. Good luck to you my friend.

Hello DennRobins1! Thank you for writing. I'm afraid that the surgery won't help, my wounds take a long time to heal. I can't imagine how long my recovery will take. Another fear I have is that I will get bigger flare ups in other places like my groin. How long was your recovery after surgery?

This message is for anyone who currently suffers from Hidradenitis Suppurativa (HS). PLEASE read my entire post before commenting, I have an EXTREMELY IMPORTANT & HELPFUL message to share for anyone who resonates with this information (This is not a scam and there is no payment necessary for this information… just PLEASE read on). I had my first HS outbreak when I was 16 years old, after I spent an entire childhood harboring intense feelings of self-shame and disgust over the body I was in. I had been bullied from a young age due to the tics I developed in elementary school (a mild form of Tourette Syndrome), so you can imagine how the other children reacted to my tics. I lived my entire life thinking there was something very wrong with me, until this year, on April 22nd, 2014, when I decided to take full responsibility for the misperceptions from my childhood and the harsh, negative effects they were having on my body.
In 2012, when I was 26 years old, I finally found a family doctor in the city I had moved to 4 years prior. I had never shown another soul what HS was doing to my most intimate body parts, but something in me knew I had to tell someone. They were getting increasingly worse and I didn’t know what to do. I also did not want to suffer in silence anymore. At my first physical with this new doctor, I was surprised she knew right away the name of my condition. I told her I also believed it was HS, as I had Googled it and believe I had the same symptoms. She confirmed what I had read on the internet – that there is no cure for HS, but that losing weight may help, and that I should consult a dietician since she believed HS may be caused by certain foods. I left that day with my hopes dashed.
I had tried going vegan, gluten-free, and sugar-free, even cutting hot sauce out of my diet, but each time I failed, and still, my HS would only get worse. Fast forward to this year, February 2014. I found out that my benefits package at worked covered Naturopathic Therapy, so I immediately began looking for a local Naturopath, to get a 2nd opinion on my HS. Bingo. I found an amazing Naturopath who told me she has CURED cases of HS in some of her clients. She said it was a combination of the homeopathic remedies she gave me, as well as diet and exercise that would help me to heal my HS. Well, I’m sure you can imagine what happened next. I took the remedies for about 2 months, but my HS did not get better. I eventually stopped taking the remedy, and finally, on April 22nd of this year, as my HS was acting up very badly, I was at a complete loss for what to do to help myself. I would sit in the bathtub after work and cry and cry, victimizing my own self and feeling so sorry for myself, wishing there was something I could do. It was then that a little voice spoke up in my mind, it was faint, but I heard it. It whispered to me “Just start loving yourself.”
PLEASE KEEP READING as I promise this is not spam, I am just trying to get my full experience out. Over the past few weeks, I had started to think (and this may be due to my spiritual-oriented lifestyle)… that maybe my HS was not being caused by my external environment at all… maybe it was being caused by my internal environment? Which, after YEARS of self-hate and self-shame, I’m sure was as TOXIC as could be. When I heard that voice pipe up in my mind and tell me to just start loving myself, I thought… “Hey… that’s the one thing I haven’t yet tried. What have I got to lose?” And literally, from that moment on, I started to notice all of the negative thoughts I was telling myself on a daily basis (there were thousands). I was constantly covering myself up, picking out my flaws, and would wake up with an endless feeling of dread each morning. But on #Day1 of my self-created self-love challenge, I started turning all my positive thoughts into negative thoughts. I know this probably sounds CRAZY. I even set a reminder on my phone to go off each day, that would say ‘Have you loved yourself today?” alerting me to remember to tell myself I loved myself even just for 5 minutes a day. Soon, ‘I love myself’ became the reel on repeat in my mind any time I was going through a hard situation. I still had many days during the initial stages of self-love where I was in pain from the HS and crying in the bathtub, but instead of pitying myself as I was crying, I was screaming “I love myself” inside my mind, really putting my emotions into it. I started to hold my scars and open wounds, and told them I loved them and that we would heal together.
Today, I am on #Day218 of my #365DaysOfSelfLoveChallenge. What nobody in my life knows is that this is an experimental challenge I created in order to heal my HS. AND TODAY, MY HS IS HEALING. FOR THE FIRST TIME IN 10 YEARS. My skin is GROWING OVER, trying to re-form itself, and my scars are fading day by day. I still have outbreaks and am still ridding my body of these toxins, but I am doing so from a compassionate mindset instead of falling into the victim mentality that this disease preys on. PLEASE, I am begging you to give this a try. You do not have to do ANYTHING except be aware of and begin to change your negative thoughts.
If you resonated with this message, please read about my journey to self-love on my website, www.starlits0uls.com. YOU DO NOT HAVE TO PAY A CENT. This is simply a story of my journey to self-love, and I believe many of you will benefit from knowing this information. ♥♥♥
PS. If you would like further ‘proof’, I would be happy to send you a picture of one of my scars that is ‘reforming’. Contact me on my website and I will send you the photo.
MUCH LOVE & LIGHT to all you beautiful souls ♥
Heather

i've had HS since i was 14; am now 37. diagnosed myself at 24. i would NOT take antibiotics unless you actually have an infection. they are pointless and will do nothing for you except make you less responsive to antibiotics when you DO have an infection.

i've run the gambit of treatment: antibiotics, steroids, acutane, surgeries...currently i am in a clinical trial for humira. you can go to clinicaltrials.gov and look to see if there is a study near you accepting applicants. you have to meet certain requirement though. i am a stage 3 HS sufferer with ALL areas of involvement...aren't i a lucky girl?

for me, personally, kenalog shots directly into the lesions were the best treatment. oral steroids were the worst. i gained over 100 lbs on those fu*^&ers. PREDNISONE! (to be read like KHAN! from star trek). however, humeria has made some difference for me, but i still get them. you know there is no cure. :(

i have hope for new things like maybe direct application radiation treatment or possibly gene therapy? my particular case is familial. you never know. i have days where the pain is so intense, and i used to be on oxycontin to deal with it. some days i want to eat my gun... but i go on, hoping science will deliver some relief.

I've had HS for 15 yrs. Like many others, I suffered for months before going to a doctor, because I thought it would go away. Then I dealt with doctors/dermatologists, etc misdiagnosing it as a boil or ingrown hair. I had two surgeries, only to have new flareups afterwards. My HS started when I was in my best health, so for me it wasn't diet or weight. When I exercised, or if the weather was hot, that's when I would get new flareups that would take months to heal.The 3 things that worked for me, and I sincerely hope they help you:1) hydrogen peroxide: I would soak a cotton ball with it, and apply it for 10-20 minutes 3-4 times a day until the flare up reduced and healed. After applying, I would use a large bandaid to cover the area from friction.2) Drinking a 500mL bottle of water every night before bed. This is what I did for about 10 years to keep it under control. Whenever I missed a day or two, I got a flare up. Nothing other than water worked, and drinking the water at another time of day didn't work either.3) Epsom salt baths: I started these baths for another reason, and realized that I wasn't having breakouts even if I forgot to drink water before bed. I was taking a bath a week, and then I missed a few weeks, and that's when I had my last flareup. I've gone back to the baths, and it's helped me.I wish you the best.

Thank you so much for sharing your story and what's worked for you. I'll start adding those into my regimens. I'm really trying to see what works for me. Had another flare up last night and I'm in a bit pain. The good thing is that it popped on its own after a hot bath. Now it's a waiting game till it heals. Are your flare ups under control?

Your not alone. I've been diagnosed with Many different things and today the dermo said it's HS. I read someone's post on here and she mentioned monoistat works bring it down a bit. I don't want surgury myself; if there's no cure then there no pOint spending all that money and being in all that pain.

Thanks Ashlynn ... I'm strong most of the the time, but I have my moments when I just can't anymore. Surgery scares me, I have a wound that's been open for a year and nothing has kept it closed. I'm tired of antibiotics and how they make me feel. I've been reading other peoples stories and this place is actually helpful. Like you said at least we're not alone. How are you dealing with HS?

That's just crazy.. I've been lanced twice and both were pretty deep, mine closed but I have two ugly scars. I myself can't stand dealing with HS, I almost didn't graduate because it took me out of school, it's ruined how I feel about myself. I will never be able to feel positive or fulfill the needs and looks for my next boyfriend and or husband down the line... I'm always grumpy and in pain. I can't excersize and heal and feel better due to the erea(s) it's in

Hi, it's insane how our stories are so similar. Even though I have ppl in my life that are supportive... I never feel like they truly get it. That I'm in pain almost every day.. But I've gotten so good at masking it that they don't even know...

I had surgery on both of my arms and under one breast about two years ago. I can tell you that the surgery was ROUGH! In terms of recovery and pain. To date I haven't had any more flare ups under either arm... But it just moved to my groin and buttocks with a vengeance. I can't say I regret the surgery... But it makes me so discouraged to still have to fight this disease... After all I went through.

My advise is to just think long and hard. Do what's best for you. If I've learned anything over all these years it's that it attacks everyone of us differently.

Thanks for sharing your story. 💜💙

Thank you for writing MJ282.

I have had a few breakdowns this year, crying uncontrollably. If my HS were, a mild case like it used to be I would be fine, I suppose. However, the pain you say you feel/felt is all too real for me. I to try to act as if everything is ok and I mask the pain until I can’t anymore. My family/friends had no idea what I was going through until I was hospitalized last year. The mask was ripped off my face. They tried to be supportive and they thought I would be better in no time, but when they realized this wasn’t going away they seemed as hopeless as me. They tried not to show it, but I know that look.

There is no quick fix, no two patients are alike, and what works for one person may not work for the other. This is what frustrates me!

How long did it take you to heal after surgery?

It took me about 6mos to heal completely. He decided not to do a skin graft... And just closed both arms up. One stayed closed the other popped wide open. My entire right arm pit was one big hole. It had to fill in and then close. I won't tell you it was easy... It was one of the toughest things I've ever done. But I'm glad I did it. I have scars. But my arms look so much better. I had a very good plastic surgeon. I hope you do too.

I appreciate you writing to me, it's been insightful. I'm still thinking about it ... Surgery is just so scary to me. I've met a few surgeons but I haven't felt a good vibe with them. Were you out of work for the 6 months it took you to heal? My surgeon mentioned that I couldn't get both arms done at the same time ... How far apart did you get yours done or were you able to get them done together?

Me too. :( Sorry to hear you have it too. Stay strong

I'm not sure what to suggest for you. All I do is take antibiotics and have special lotions and such and it helps keep everything under control with just occasional flare ups :(
But don't give up.

Thank you, I'm really trying to. I have good days but this doesn't seem to get better. I live in a constant flare up that's the bad part, I haven't had a break in so long.

Oh no :(
I'm sorry. There was a point where I could never have a break, but hen I switched doctors and that's when I got the right treatment that has really helped me. Losing weight helped me as well.

I've lost some weight and I have an appointment with a new doctor in September. Are you seeing a dermatologist? Can you share what treatment is working for you?

Yes, I am. It was as simple as switching medications for me^^

Whats the medication called? I

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