HS is making me hate myself.

Posted , 11 users are following.

Hi all,

I'm here because in all honesty, I'm not coping. 

I'm a 17 years old (female) and was officially diagnosed with this condition about three months ago. Since I was about 12 I've dealt with odd acne on my chest and breasts. By odd, I mean it was never pus-pimples.. just small red sores. They rarely burst, just built pressure and ched until they finally went away... however they left deep, hard keloid scarring. 

I never had bad "flare-ups" when I was younger. Up until May/June this year, I was doing well. I'd been treated with prednizone by previous doctors, and steroid injections to soften my scars and help them heal... but I was over it and ate a very clean and strict diet. This was mainly greasy/oily food and sugar free. 

Then suddenly (and I'm not sure why), I developed a lump in my left armpit. No rednoss, just a lump under the skin, like an ingrown hair. I treated it like one until it reached the size of a grape and I began to panic. My doctor took blood tests, asked for ultrasounds and fine-needle aspirations. He didn't have a clue and prescribed antibiotics in case it was a very infected ingrown hair. A week and a half later, I discovered a small abscess had developed. It didn't weep, it ws just a hole in my underarm.. which grew until I was able to get to another doctor (I was in the middle of relocating at the time). He explained that I had a sebacious cyst (caused by hidradenitis) and the hole was the drainage point. He also explained that they're normally scalpeled and drained, or surgically removed, but mine got to the point where it took care of itself. However, the abscess didn't heal for 7 whole months. This was the time period I was on the waiting list for surgery. 

In these months, my chest and shoulders flared like I had never ssen. The back of my neck, as well. My doctor gave me Isotretinoin (accutane), and my dermatologist gave me Erythromycin to treat the flare up caused by Accutane. Then I started on the pill to just try to help my overall condition. I was in constant pain, and couldn't wear singlets or chest baring shirts because I was embarassed by the sores. They were/are so red and angry. 

Anyway, I eventually saw a surgeon who set me up for excision surgery. On the day, before I went into theater, he started drawing all over me. He planned to remove some of the cysts on my chest to help clear up the rest of the sores, as well as fixing my underarm. 

I'm here tonight because it's been 2 1/2 weeks since my surgery. I'm in and out of the hospital 2-3 times a week (it's also 2 hours from my house) because my surgeon insists on seeing his work. 

I had my stitches removed a week after surgery. Two of the wounds opened up within 24 hours because Nobody had bothered with steri-strips and despite my complete carefulness (and hardly any mobility) the skin just couldnt seal on its own. My underarm was fine until last Friday, when a tiny, pin sized hole developed, and has now almost grown to the same size the original was. I see my surgeon tomorrow. He has left my chest open (just covered with bandages) to "see how it heals" and I might "have a slight scar". These wounds are almost 2cm wide. 

I'm here for multiple reasons. One: How do I stop being an experiment for my surgeon? He is so overly interested in just "seeing how things go" and I'm so done after 7 months of being bandaged and poked at. My skin is coming away with my bandages now. I'm beyond frustrated. 

Two: Can I actually ask for stitches in my chest, given that by tomorrow its not scabbed enough to just leave alone? 

Three: I've read a lot about cutting nightshades out of your diet, and plane to do so. Are there any other tips for reducing flare-ups?

and Four: How in the world does anybody cope? The title is the ultimate reason for my post, besides feeling alone in this. 

I'm so tired of feeling ugly and I'm disgusted by myself. 

Sorry for the big post.

Thanks anyway, 

Dakota

3 likes, 11 replies

Report / Delete

11 Replies

Next
  • Posted

    Hi,

    I'm a fellow sufferer and have some advice tips. Diet does affect the condition but it's individual and takes months to have effect ( in most cases). Water fasting really helps me but obviously isn't safe if your underweight. Also antibiotics and accutane are entirely useless unless you have an infection. Furthermore, don't trust doctors, in this area of medicine (autoimmunity) they really don't have a clue - work with a naturopathic doctor in conjunction with your regular MD. join FB groups for support too.

    Cheers and good luck - stay positive!

    Report / Delete Reply
    • Posted

      Thankyou for the tips. I agree that accutane and antibiotics are useless! I have to take the antibiotics for now because of the gaping holes in my chest and arm, but I'll be onto more natural remedies as soon as I feel they've healed enough.

      I definitely need to look into a naturopathic doctor- are they very expensive? My GP is bulk billing and wonderful, but obviously his methods for this particular issue haven't been working.

      Thankyou again smile

      Report / Delete Reply
    • Posted

      No worries. Good idea, I'm from the UK and naturopathic doctors are not overly expensive and lots of information can be found online. Research and listening to your own body is key. Keeping a food diary and monitoring symptoms is a good start. also read the hidden plague by tara grant - you'll know exactly what to do after reading it. 

      Good luck

      Report / Delete Reply
  • Posted

    Dear Dakota, I can't express how bad I feel for you and especially at such a young age sad   It's not pity, just understanding. I wish I had a magic wand to help you! I am sure you will be getting a lot of replies so let me give you a brief idea of my thoughts.

    1-actively keep looking for a new Dr.! I was sent to a burn surgeon. Keep your options open. I hear a lot of Plastic surgeons are knife happy. Also look at the HS Institute of Ohio's website for new methods. I have had several Dr's tell me they now leave wounds open though it sounds like yours didn't on purpose. Some ppl get flares while healing in the same spot or even an inch from site. This is what's keeping me from surgery so far. It's quite common and i can't imagine how frustrating!!! Also, unless i missed it what stage are you on the Hurley system? AND lastly, do not let ANYONE operate or what have you if you do not feel comfortable!!! Just tell them no.

    2-I would seek a second opinion ASAP

    3-Nightshades and gluten affect a lot of HS sufferers. Many try paleo or elimination diets. For it to work, each elimination must be at least 2 months long. For me, if I perspire (heat, sweat,etc) and over stress, I am done for lol.

    Some people say take antibiotics but truthfully for most, not all, they usually just don't work and if you take to many you build tolerances. They do not help me or anyone I know, but I have heard of others where it Temporarily worked. Make sure after showering to dry completly!! Stay away from deodorants(try crystals), body washes etc. Hibiclense and other anti bacterial washes are what you should use. NEVER try to pop yourself. You risk infection big time and be on the look out for tunneling. I hate to tell you, but try not to shave your underarms too. You are young and ay want to look into laser, I am in my 40's and don't care smile Ok, I maybe cheat once in awhile and do shave but it's not recommended lol smile

    4-YOU ARE NOT ALONE! You always have me to talk to and many many others. This disease sucks ass and at times I cannot stand the smell of myself and the pain is so bad I can't walk or move my arms. The pain is evil and I cry a lot when flaring. It's also OKAY now and then to have yourself a pity party and come here and vent smile We can all relate in one way or another. Also, do not feel like you aren't attractive. Yes we have lumps, scars, and smells bu tit doesn't define us. No one is perfect whether it be inside or out. You are beautiful and never alone smile

    Well, I hoped this helped and I hope you have someone at home to talk to and don't forget yu are always welcome heresmile  Please try and feel better and remeber that you are beautiful biggrin)))

    Report / Delete Reply
    • Posted

      Thankyou for all of your advice, it's not nice that you've had to learn from your experiences with HS but it is nice to have people who understand!

      I'll be searching for other options after today if my surgeon doesn't listen to me and take action. He's a breast and cosmetic surgeon, and is very keen on doing a skin graft from my thigh to my chest. He feels that removing all of the affected skin and tissue will make the disease go away. I'm not entirely sure about this... I'm not a medical professional. 

      I'm Stage 2 at this point, which is lucky. I still don't understand much about it but the surgeon said after my surgery that they'd removed the tracts in my armpit as well, to make sure it didn't happen again.

      Most of the people in my family are Coeliac, so I eat a very low-gluten diet as it is. I will definitely be removing Nightshades... even though I love potatos and tomatoes, haha! Unfortunately overstressing is something never absent from my life, but I try.

      I can safely say that antibiotics have stopped working regards the treatment of HS for me, but they do help keep infection away while I have open wounds.

      Honestly, if I could afford laser (or even just waxing) I would transistion to that for good! I've been pretty lazy regards shaving though, there doesn't seem to be a point when I can hardly lift my arm as it is. 

      One of the worst things is how some nurses react when I need my bandages changed or wounds cleaned. I think a lot of them have no idea what it is, and many have made "ew" sounds or freaked out a little. As someone with excellent personal hygeine I'm extremely upset by this because there's nothing more I can do when the sores are under bandages! 

      Thankyou so much for your kind words. I definitely feel a bit better knowing I'm not alone. lol

       

      Report / Delete Reply
    • Posted

      One of my experiences with bandadges it made it worse. You want as much air in that area.. so try no bra for a couple of days (if you can) and bandages when your home. bactreia and infections occur in dark and covered places. Thats why they wont heal. remember AIR! and stay away from sweating, until they can heal properly. by the way instead of bandages try a merigold pedals to cover it. Helps heal :-)
      Report / Delete Reply
    • Posted

      Thank you. Your words touched me also. I am a 30 yr old female and have been suffering since age 13. I have tried antibacterial soaps, antibiotics, surgeries, even radiation treatment. I am at a point now where nothing seems to matter anymore. Bad things cross my mind a lot lately and I just don't know what to do or where to go from here. I am steady searching but coming up empty handed. If giving up isn't the answer please help with other options
      Report / Delete Reply
  • Posted

    I had HS for 10 years and was in stage 3. At that time, I would have been better off dead and had tried everything and was a Guinea pig for my dermatologist but I didn't mind! I wanted it gone! The day I cut out nightshades, the 5 cystic tracts I had started going down immediately but it takes a few weeks to reach remission. Coconut and nuts are also triggers for me. Nightshades are specifically proven to be like a poison for autoimmune conditions. Something about the alkaline in those plants?? I'm 2 years in remission! I tested the waters in July and ate some sausage that had spices in it and I will never make that mistake again! My body went haywire! Good luck! You have to be very strict and read all labels with food sensitivities but it's worth it to get your life back!
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up