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,...

1,904 Members
4,903 Posts
0 Online
Skin & Hair
/ Hidradenitis Suppurativa Support Group

Depressed

Ashley88
Ashley88

I'm depressed. Depressed that skin disease is running my life!! I'm not the person I want to be in life, I would love to dress up the way I did when I was younger, I wear t-shirts and jeans all the time...people always tell me that Im pretty and should dress up and put on makeup, go out, hang with friends, be social.. I have to lie and say "I'm more comfortable in jeans and tee, BUT I'M NOT!! I don't wear makeup, do my hair or even dress up.  I have to find things that I know can possibly mask the smell of a open wound I might have, pick colors that I know are dark, just incase a wound ruptures I'll know that it wont show. That's the life I live...I don't work anymore, putting on clothes is a daily struggle for me, bra's, underwear..they rub wounds that I already have, or I'll get flair ups the size of golf balls and be embolized  for a few days. IT SUCKS! I'm freaking 29 years old, mother of 3 very active boys, married to someone who likes to be on the go all the time, I have to constantly make up excuses as to why I don't want to go somewhere or do something. I haven't talked to any about it, I'm embarrassed, I don't want my children knowing or my husband... I know what you're thinking..how can my husband not know??? I lie, when I have flair ups Ill make up every excuse in the book just to not have sex.. my husband hasn't seen me naked in a very long time..if we are going to be intimate I make sure the room is pitch black...I feel guilty. I don't want him thinking any different of me, thinking I'm disgusting, wanting to leave me for someone who doesnt have HS.


Nobody knows my daily thoughts, nobody knows that I cry ever day, asking God why me..what did I do to deserve this hidious body I'm living in, why do I have to go through pain everyday??? This is something that will NEVER go away, I will NEVER be comfortable in my own skin, I'll never get to wear a bathing suite, tank tops or something sexy for my husband... Many times I've thought about just ending the pain.. even tried a couple of times when I was younger... but I look at my boys and think how heart broken they'd be. I just want to ease the pain, I recently started smoking weed.. all the time.. it helps with some pain and depression but of course smoking only make flair ups worse.. NO CURE, MANY MORE YEARS OF THIS SO COME. I JUST WANT IT TO BE OVER

Mrsbrown
Mrsbrown
Hey lady i know ot take alot out of you cause it does me the same way it get me down as well when i have flare ups and it hurt when it rain or get cold it hurts about the underwear sometimes if you have a long night shirt or something try to sleep without underwear if that dont help they have women boxer they help perfectly as far as jeans they too tight for you go to walmart and buy as many tights that look like pants that help me and the bar i only wear it when i have to go places but you might wanna look into getting you a stripless bra my boyfriend been with me when i foumd out i had it we still have sex he was my biggest supporter if you not on amy meds right now you can take naproxen advil and aleve that will help until you talk to your doctor about antibiotics for the flare ups and the smell some stronger pain meds that will ease the pain so you can get some release and some nerve pill but i really think you should tell your husband how do you know how would he act if you dont tell him besides you kepping something from him that might end your marriage he might think you cheating cause you wont have sex if my bby ask for sex and im flare up real bad he will wait or ill say come on just take your time:bit of course he wait till i get better if you wanna talk you can inbox me but tell your husband he might already know just waiting on you
ajills
ajills
I'm so sorry, Ashley88. I've been dealing with this since I was 19, a full 40 years now. I know the depression, I know the pain and I know the embarrassment.

It took decades before my sister and I finally confessed to each other we both had it. Worse yet, I passed it along to my daughter, now 30. Now we all 3 openly discuss and call the boils "buddy's". Not that it is a friend by any means, but it is a good code word.

You can deal, but not beat this disease. Keep it clean I always say. Shower with Benzoyl peroxide 10% soap on the target areas EVERY DAY. wear the looser clothes, but don't stop dressing up when you want to.

I too, hid it from my husband for years. He was more than understanding after we finally discussed it. Now he supports me 100%.

Right now I'm in a pretty good space, Our diet changed to low carb about a year ago, and that made a world of difference. I take doxycycline every day as a maintenance, as well as supplement with Zinc (my favorite) and Tumeric.

All I can say is that God still loves you. You are not alone.
LelaWms
LelaWms
I know your pain but ending it is NOT AN OPTION. Get that out of your head. You should talk to your husband as he should be your greatest supporter. It beats him thinking you are distant for other reasons. I have been soaking in a salt detox from the California Salt Company along with Epson salt and drops of Tea Tree Oil. And drinking Master Tonic with turmeric and the results are amazing. I was at the point of needing surgery and now 2.5 months later it is 99% gone. I also bought roll on Tra tree oil. Happened to stumble upon it in CVS over by the nail fungus meds. It dries the areas. I have not found where dietary changes made a positive impact. Don't stop trying to find what works for you. You cannot release some stress without having the support of family. Take care
guybrown
guybrown
I'm so sorry. I have been there many times. I echo what others have said about natural remedies. I recently discovered that the supplement 5-htp helps me tremendously. I have struggled for 20 years with many mental and emotional breakdowns in between so I can relate to the hopelessness. But, there is hope. I have found through diet and supplementation that I can manage my disease. Paleo diet plus supplements (zinc, magnesium, 5-htp and probiotics) have given me my life back. I will pray for you! There may be someone waiting for your story of healing to unfold so don't lose hope!