Living with Hidradentitis Suppurativa!

Hello everyone, I am a 43 year old woman who was recently diagnosed with HS(The Joy Of Just Knowing) in March of this year!! Oh did I mention I have suffered since I was 7. I've seen many doctors and I've had over 23 surgeries since age 17 for this "mystery disease". For 10+ years my primary doctor was a surgeon. Life SUCKS for me as I'm sure for you all as well. I'm supper excited to have found this site. I can go on all day talking about the embarrassing moments of talking to clients as my shirt starts to become saturated with fluid from a ruptured abcess without my knowledge. Or the delightful smell that comes with the rupture. Not being able to think clearly because the pain is so bad. Or the mind numbing meds that they give you. What my children see me go through. My lack of social paricipation because I never know from one minute to the next what will happen. I have been diagnosed with stage 2 by Infectious Diseases. No one here in the States know how to help. I've met with many rude doctors and their staff because of their lack of knowledge. Get this ...once I had a pilonidal cyst and they prescribed me "hemorrhoidal suppositories"! Really, I said. Needless to say 48hours later I had emergency surgery with a complimetary 1 week stay in the hospital. Anyway, I would love to hear from anyone who would like to talk to someone who KNOWS YOUR PAIN! I am happy, hopeful and thankful!

7 Replies

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  • Hi Npainbuthopeful,

    Your experience sounds awful. And as a former nurse who sometimes cared for people with pilonidal sinus problems, being given suppositories for a pilonidal cyst is shocking. It's such a painful condition.

    Unlike you, I have Sweet's syndrome not HS, but take a look at bio-thingeys blog who also has HS. I'm sure bio-thingey would be interested in your experience of HS.

    Shell x

  • I think Spot also has HS x

  • Hi Shell,

    Thank you so much. You are right, it is a very painful condition. Being afraid, in incredible pain and 17 at the time with my "first" pilonidal cyst, I wish I had you as my nurse, things I'm sure would have been alot better for me. I wish you the absolute best with your condition. We may have different conditions, but our suffering and need for support and understanding unites us all in this wonderful community of "SPECIAL PEOPLE".

    Npainbuthopeful

  • Hi Shell, although I know little about your condition, we are all on this website to help each other so I just wanted to let you know that I (among others I am sure) can feel for you. I suffer with eczema and suffered [what my consultant described as] a nervous breakdown through my skin. I have been hospitalised 4 times and I can fully empathise with your pain and your experience of people not fully understanding. I have had friends say to me "why don't you just put some cream on" ...............I want to shout "What do you think I've been doing 100 times a day?" I am so sorry you are suffering. None of us deserve it and I am so sorry that you have suffered so many embarassing situations. I haven't had a ruptured abcess but my eczema has weeped and I have woken up stuck to my pillow or my clothes have stuck to me and I have had to peel them off. I can't compare my condition to yours but I just wanted to let you know I am thinking of you and I wish you all the best. Just remember you a very brave and wonderful person and your children are very lucky to have such an angel as their Mom.

  • Hi Chandora,

    I think your post is directed at Npainbuthopeful, but I'm sure your post will be appreciated. You're right about the embarrassment issue. It's something that is very difficult to deal with. I'm not suprised you suffered a 'nervous breakdown'. Living with a skin condition is both physically and psychologically exhausting. People without skin conditions often fail to understand this.

    All the best to you and Npainbuthopeful,

    Shell x

  • Thank you for your kind words Shell - I'm still getting used to this website. I think I have replied directly to Npainbuthopeful now. I agree with Shell, you sound an amazing nurse. We were very lucky with the skin hospital when it was in Edgbaston, Birmingham but the last time I was in, the nurses wanted us to do more for ourselves. I can understand it from their point of view (I understand how busy they were) but I was so dry that I couldn't even put my arms behind my back to put my cream on my back.

    I wish you all the very best

    x

  • Hello Npainbuthopeful. I am so sorry to hear of your plight and the disregard and ignorance you have/are experiencing. I have a MOST severe form of HS and have had a whole gamet of HS disasters, operations and mutations.

    I will caution EVERYONE who even thinks they have HS. OR any of these associated symptoms. PLEASE PLEASE PLEASE read my update NOW!!!!!!!!!!!!!!!!!!!

    Last week, I was supposed to get a debridement of the buttock for a very severe part. My surgeon had to halt all planned action as I have mutated and contracted cancer now. This week I have had a CT and will be going for chemo and radio therapy soon. Can't wait for next week's news!!! Hahahaha.

    I am handling it very well as there are worse things in life than that word cancer. Like chronic severe pain. Please make sure you are in touch with your surgeon at all times/regular intervals so that this can be picked up quickly.

    Ok I had a workplace accident a couple of years ago and additional stressful incidences that has given me added mutation and increased HS activity but the mutation still goes on no matter what. Surgery is usually the only route and quicker the better.

    So that's me up to date so far. If you wish to talk over anything or have any ideas or additional experiences please message me.

    Please take care and look after yourself wherever possible.

    :)

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