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
tom85153 dakjay
Posted
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!
dakjay tom85153
Posted
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
tom85153 dakjay
Posted
Good luck
tj268 dakjay
Posted
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
Ok, I maybe cheat once in awhile and do shave but it's not recommended lol ![smile](https://patient.azureedge.net/forums/emoticons/smile.gif)
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
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](https://patient.azureedge.net/forums/emoticons/smile.gif)
Well, I hoped this helped and I hope you have someone at home to talk to and don't forget yu are always welcome here
Please try and feel better and remeber that you are beautiful
)))
dakjay tj268
Posted
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](https://patient.azureedge.net/forums/emoticons/lol.gif)
we-are-not-hs dakjay
Posted
katrina18795 tj268
Posted
crystal_08850 dakjay
Posted
jason69456 dakjay
Posted
http://www.oapublishinglondon.com/article/1087
Ask your surgeon to use this and see what he says. This study shows how fast this sheet heals wounds and you can even do your own research.
Remember, the best person to treat this from what I have heard are plastic surgeons who have experience, not just a random dermotologist/or surgeon.
jacischeck dakjay
Posted
lisa23476 dakjay
Posted
25 yrs now with HS
One time I had a surgeon close a wound and I would never recommend it happening again
Mine opened back up where others starting growing so was badly infected and turned rotten I was taken in and was given maggots to eat the bad flesh under my arms
So leaving open yes takes longer but so much better in the long run
So under stand why your feeling low but pls try not to be
Don't let it beat you xxx
Lisa xxx