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Need support

Posted , 13 users are following.

stephanie15666
stephanie15666

I have delt with HS.for about 7 years near my groin (panty line), was diagnosed about 2 years ago, I have had surgery and it was gone for a while then came back.... I am having another episode, been for about a month I finally went to doc for a prescription she gave me antibiotics, I have been on them for a week and it's not healed, I am getting very depressed I am going to need surgery again, I hated packing it with the gauze I couldn't wear jeans, I couldn't even go to work some days. I also feel bad for my husband because I am in so much pain, or having drainage I can't or don't want to be intenintimate and I feel so bad for him. I don't know what I want from joining a support group I guess just to know I am not alone.... most docs don't even know what HS is..... sorry for long post

1 like, 20 replies

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  • whoshunny15289
    whoshunny15289 stephanie15666

    Posted

    hi Stephanie I'm new also and haven't even gotten a Dr to assist or confirm I have hs but I have been reading and making diet changes not eating gluten and sugar and working on taking nightshades out as well I have noticed a change already and it's only been 7 days have you tried to make changes in your diet. People here have given me great feedback. I'm sure your husband loves you and understands and probably feels for you and wishes he could help make it better. Talk with him and communicate how you feel scared and bad at the same time I bet he understands and feels helpless also. I feel for you and hope this helped a little.

     

    • stephanie15666
      stephanie15666 whoshunny15289

      Posted

      Thank you, I forgot that someone had once told to watch my sugar intake.

      My husband is a wonderful man and u are right I just need to talk to him, I think a lot of times it's me that starts to feel like here we ago again... some years it seems like I have an episode almost every month, I think longest I have went in seven years is about 6 months without having an episode. It's these long (time length) that start to get me depressed. Your kind words mean alot and I will look into eating better.

  • hypercat
    hypercat stephanie15666

    Posted

    Hi in my experience ab's don't heal it but they do at least stop the infection so it isn't painful.   If I get ones that recur several times I get them incised to clear them up completely.   I don't know of any other way to remove the gunk inside and this does work for me.

    I agree doctors know diddly squat about HS which is why you need to insist on a referral to a dermatologist as they are the experts.   They will make a firm diagnosis and give advice on all the treatments available.  I hope this helps.  x

    • stephanie15666
      stephanie15666 hypercat

      Posted

      I have always been seen my just regular doctors (internal medicine, ER, urgent care, family doc)and most recently it has been my OBGYN because of its location (she has seemed to know the most) in 7 years I have never seen a dermatologist..... I better try getting an appt.

      Thanks, I guess joining this group was a good thing, I.debated for a long time if I should join. :-)

    • hypercat
      hypercat stephanie15666

      Posted

      Oh I didn't hesitate for one moment before joining as this is the first time I have managed to find a site about HS.  I was feeling isolated and needed to talk.  I also wanted to find out what works for others.   I knew there must be a lot of folk suffering out there and wanted to meet some of them.  I am so glad I joined as well smile   x
  • lumpofsugar
    lumpofsugar stephanie15666

    Posted

    Hey Stephanie,

    Having struggled with the elimination diet for a year and now getting results I would definately recommend it. For me it's dairy and nightshades. I also have outbreaks on my panty-line and can totally sympathise with the problems with intimacy. For a long time I had open sores down there, lets just say I wouldn't be keeping the light on. It makes you feel responsible when you're not, it makes you feel like you're dirty when you're not. It's truly horrible, and I'm sorry it happened to you. I now have scars, which are still ugly, and I don't think I'll ever feel confident with my clothes off, but this is the hand I was dealt, and I'm slowly trying to accept it. I'm sure your husband wants to support you and make you feel loved, but I know it's hard to let someone in, when every instinct is telling you to hide away. Remember that we are here, and that there are thousands of us: it makes you feel very alone, but we need to try and remember we're not. Hope it gets better for you my friend.

    • stephanie15666
      stephanie15666 lumpofsugar

      Posted

      Thank you, I am not sure why your post meant so much to me, maybe because I have never met anyone with the same issue or just your kind words but thank you thanks for support and just understanding :-)

      BTW What's a nightshade?

    • lumpofsugar
      lumpofsugar stephanie15666

      Posted

      Ashwagandha

      Bell peppers (a.k.a. sweet peppers)

      Bush tomato

      Cape gooseberry (also known as ground cherries—not to be confused with regular cherries)

      Cocona

      Eggplant

      Garden huckleberry (not to be confused with regular huckleberries)

      Goji berries (a.k.a. wolfberry)

      Hot peppers (such as chili peppers, jalapenos, habaneros, chili-based spices, red pepper, cayenne)

      Kutjera

      Naranjillas

      Paprika

      Pepinos

      Pimentos

      Potatoes (but not sweet potatoes)

      Tamarillos

      Tomatillos

      Tomatoes

      I haven't even heard of some of them, but basically bolognaise and chili are off the menu (god I miss pizza). Aw, no worries! It takes a while, but was one of the best things I've ever done, good luck!

    • ashley_17884
      ashley_17884 lumpofsugar

      Posted

      Well it sure feels good to see someone have the same exact complaints as me which are rather embarrassing when it comes to intimacy. Like you said, the panty line area is where i unfortunately suffer and the lights must be OFF if anything is going to happen. It is ashame, but luckily I have an understanding boyfriend. Anyhow, I just want to share my little remedy which is drawing salve. I particulary use Prid which really kind of sucks all of the pus and whatever else is in there out within one day. You have to apply a generous amount on a gauze pad and place onto infected area. I recommend to keep doing it for a few days because it helps the healing process. Hope that was helpful!
    • stephanie15666
      stephanie15666 ashley_17884

      Posted

      I have never heard of Prid, I will go get done ASAP, thank you!!

      Everyone is so great in this group.

    • lumpofsugar
      lumpofsugar ashley_17884

      Posted

      Ahaha, I know right! I'm suprised it isn't mentioned more in HS forums; the intimacy thing is right up there with the worst aspects of this illness for me. Not a nice thing to have to explain, and hard to be in the moment so to speak if you're always worrying about it. Wow, I will be getting myself some prid, sounds good, thanks for sharing!
  • whoshunny15289
    whoshunny15289 stephanie15666

    Posted

    Nightshade are foods like tomatoes peppers eggplants look them up you can find a really good list of them I have been taking them out of my diet also potatoes are one also I think or they are gluten. LOL. I'm cutting as much out as I can for eight now to try clear my skin then will add. One new food to see what happens

     

    • adampaul79
      adampaul79 whoshunny15289

      Posted

      No they are not glutens smile

      Gluten foods are totally different to nightshades. 

      Glutens are the breads, cakes, biscuits, cerials etc. Its a totally different list and if I say so myself a lot more depressing lol.

      I can have chips, but you cant. You can have a sandwich but I cant. Oh its nasty isnt it lol

  • rachee881
    rachee881 stephanie15666

    Posted

    I have had HS for about 4 years but only got diagnosed in December. Just before I hit 18 I have never not had one. My birthday was in September. I have at least 2 at the same time. Luckily I have an amazing fiance that understands (or should I say tries) I can't work or go to college because it is so bad. I failed my last college course because of the amount I was absent. I also feel bad when it comes to intimacy. It is a lights off situation. But if you even want to talk (even though I am new and other people will probably be able to help a lot more. Just a shoulder to cry on. I am here for you
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