Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Rleon6 01/06/2018

Hello Im Rosa I am 19 and I got diagnosed about a year ago.

I just wanted to ask for tips on how to cope with the pain and the embarassement. Ever since I got diagnosed I happen to feel insecure and dirty. I try so hard on not letting it get to me, but everytime I wake up and have to clean my wounds I seem to just wanna disappear and breakdown. I live in Southern California and I find it tough not being comfortable with myself to wear a cute tank top or dress. I have also come to be insecure with my boyfriend which I have been with for almost 5 years. He's very understanding and helps me through the tough moments but I still find it sad that I can't completely be comfortable. I have tried talking to my closests friends about my condition but they don't seem to understand what exactly it is that im going through...

xstaceyxannx 01/06/2018

hey, I’m stacey and I’m 14 and I got hs when I was about 12 and I went from doctor to doctor and none of them knew what hs was. I totally understand the pain. It really helps if one of your abscess have burst to put like a warm flannel on them to help sooth the pain and drain the pus. You can also do this if they are hurting and if they haven’t burst. Also i don’t really know you personally and I’m not sure of your relationship or religion but this is just a recommendation, going on the contraceptive pill helps as it gets way worse round your period so my doctor recommended it too me and it helps. Also an alternative is eating healthy, losing excess weight and wearing loose clothes. Also I understand about your friends because none of my friends understand at all and it’s so annoying having to explain it and then be like ew. Another tip would be to use a shower wash that has no chemicals. It’s so normal to be insecure like I am but with your scars you can use bio oil to get rid of scarring ( I’m from the uk and I’m not sure if they sell it in the USA). But if you need any emotional support maybe talk about it with your parents or with a counsellor or psychologist. I prey you find hope soon. From Stacey xxxxx

wforwumbo 01/15/2018

Hi
I've been there! I had to play sports at 80+kg, in singlets and skirts, with my HS flaring up. Honestly no-one even notices.

Maybe friends don't understand, but we can be thankful that they try? And if they don't understand let it slide off your shoulders, there's no way they could ever truly understand as it's more complex than they could truly know.

Mrsbrown 01/18/2018

I wouldnt try to bust it myself dont do that take a bath with dial soap patch ot up ask your doctor what to do and maybe you meed pain meds and antibiotic that hel as well talking to someone will help its ok to cry sometimes i do i had it since 6yrs i had 3 surgeries i now have them under my arm i dont have my armpits no more i have it under my right breasts on my right amd life lip on both of my thighs on my butt and between my butt im in stage 3 they say its a stage 4 if anybody ever say having surgery will make it go away they lied it dont

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