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Embarrassed :'( and alone

Posted , 8 users are following.

Smurfete
Smurfete

Hello

Today after 10 years of suffering with HS and not telling anyone, not even my partner) I went to the doctors to get some help. 

I have never left the house or been in the house whilst others are here without wearing a jumper or cardigan, even in heatwaves.

I have no confidence in the bedroom side of things either. Lights of and as many clothes left on as possible. I wish I could of been a normal one!!!

Anyway I wanted to describe my HS story hoping maybe someone could share some advice and help understand whys/what's/ and hows....

10 years ago I had my first child, soon after this HS started along with bad tonsillitis (which I had never had before) tonsillitis lasted for four years then finally they let me have them removed.

Has anyone else had HS and tonsillitis start at the same time?

My son was born via c-section and I have always wondered if maybe something was triggered through the operation/recovery or even pregnancy? 

I am a smoker, but never smoked through any of my pregnancies and never seen any difference with HS and not smoking. 

Does any one find smoking makes any difference to HS?

Also my weight has been up and down for the last 10 years. From size 10 to 18 at worse. I haven't ever noticed my HS has been affected by my weight.  Have you?

HS is restricting my life so much. Like swimming with my children, the clothes I can wear, my relationship with my partner.... How have you managed to deal with/ overcome these things?

Also has anyone noticed a flare up caused by food or shower gels etc.... I am willing to try anything and everything 

What drugs worked best?

I am getting married next year and the thought of wearing a wedding dress because of HS is giving me nightmares.

I have never told or let ANYONE see me, I feel like I have some dirty condition or people may think it's an sti or contagious.

Haven't got a clue where to turn for help.

Today after plucking up the guts to go to the docs I got given this HS name and a website to read all about it along with two months of anti biotic

Where can I go from here?

Any advise please even if it could cure me for just my wedding day :''''(  

1 like, 34 replies

34 Replies

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  • allybugg
    allybugg Smurfete

    Posted

    I'm 24 and I was diagnosed when I was around age 14?? I also have PCOS which complicates it... I have places under my arms, under my breast, one on my chest that will not go away!, on my inner thighs, sometimes on my neck and groin area. Its very embarrassing and unfair and for a long time I asked myself what I had done that was so bad to deserve this??? This illness has stopped me from doing so many things I would have loved to do with my life. Nobody knows of this illness but my mama & my husband And I have never talked about it until now, as I have gotten older I have learned to deal with it much better I guess you get use to the pain all the time although some places are worse than others. It was always put off as a rash or and ingrown hair but it had finally got its proper diagnosis, I've took it all and I've tried everything... antibacterial soap helps some but its nothing dramatic for me but I love how dove makes my skin feel, lever 2000 soap is my main pick! Hot baths help me, when I'm in pain I'll soak in the tub as long as the water is still hot !and it helps me relax. I also believe stress plays a big role in it. BUT the tanning bed works wonders for me!!! I don't know if it dries my skin up and that's what helps or what but it really helped, so maybe you could try that before your big day =) I've been with my husband since I was 17and I remember when I told him "I have some things wrong with me that I should tell you about now..." and he said "I don't care what it is because I already love everything about you" 

    What matters the most is you learn to live with this and learn to cope, everyday is a struggle and nobody knows how strong we are or how hard it is. You have the support from many people, especially from someone who loves and cares about you... keep your head up! It gets better...

  • mae07358
    mae07358 Smurfete

    Posted

    Hi Smurfete, 

    I feel compelled to try to help you and share with you what has been so helpful for me.  I've had on and off breakouts for the last 9-10 years.  I'm only 30. This has been so embarrassing for me and my partners. I share your pain.  I had lost some weight 2 years ago and started taking turmeric, which seemed to kick all of my hs symptoms away for a while. Still, it came back to haunt me really badly earlier this year.  The main difference I can think of was due to smoking cigarrettes, and maybe not eating as healthy. So I tried again with the turmeric.  It was sort of helping, but not really. I've tried EVERYTHING. Draw out salve, tea trea oil, coconut oil, etc.   Until finally, about 2 months ago I got a horrific outbreak. I was trying to trace back my steps in what I was eating/consuming/ or smoking. Then I did a search around HS and diet. That's when I discovered Autoimmune protocol & paleo. The very next day I went paleo, and now I am in month 2. nearly all symptoms are GONE.  Most HS sufferers react with breakouts after eating nightshades (tomatoes, peppers ,potatoes, eggplants, & even TOBACCO!!!)   

    Do some research on AIP & paleo. You'll be pleasantly surprised that you can put your HS into remission just by changing your eating habits. 

    Best wishes and CONGRATS on your wedding! 

    • kaymate
      kaymate mae07358

      Posted

      Here here, I totally agree and fully endorse that mae07358. It is also my belief that it might be due to following a healthy diet and for me, avoiding nightshades. I had a nasty outbreak recently and traced back to what I had eaten. Red pesto seemed to be the culprit, I hadn't realised it was made with sun dried tomatoes. Unfortunately all the nightshade veg are all my favourites, so if anyone is thinking of giving it a go,  you have to decide whether you want to be pain free and feel normal again, or carry on eating nightshades and be covered in boils and abscesses.  It's not an easy choice and inconvenient at times but with a bit of determination it's do-able. 
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