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Does this sound like Hidradenitis Suppurativa?

Posted , 4 users are following.

Janelle85
Janelle85

It started when I was 17. I got a huge painful lump in my vagina near the opening. I went to the emergency room. The doc said I had herpes and sent me home. I got the same lump a few times a month. It would drain and come right back. A few years later they started in both armpits. Huge lumps that drained, took forever to heal and left track like scarring. These days the lumps, boils or whatever are mainly located on my vagina. Two outside, two inside. They are very painful, red, drain and come back. Ive had antibotics but it doesn't seem to help. I have 3 children and have been tested for every std. My youngest is just 2mos old. All tests are negative. Its not herpes. Tell me what you think...

1 like, 6 replies

6 Replies

  • anne21112
    anne21112 Janelle85

    Posted

    Hi Janelle85

    So sorry to hear you are suffering so badly. Sounds lik HS to me by what you've said. Cannot believe that you were told you had herpes without them even testing for it - how insensitive can someone be? Have you been referred to a dermatologist? You should be referred to one if not as you really need to see someone that can diagnose you properly sweetheart. You can probably find lots of advice if you look on these groups. Hidradenitis Suppurativa Trust - Patient Support Group and Hidradenitis Suppurativa Strength in Love and Numbers Family Photo Forum. I hope so.

    You'll probably find that lots of people find relief in many different ways as what works for one person may not work for another. For instance, I started taking baths using Epsom Salts and I find that this really helps me. Also, I stopped wearing panties years ago because I found that flare ups were worse when I wore them and eased off when I didn't. Always stick to wearing natural fabrics next to your skin. I've also heard recently that sulphur soap has really helped some people.

    The only thing you can do is check what other people are finding works for them and see whether it might work for you. I really hope you can find some relief sweetheart. It's a horrible disease to have to deal with. Mine started at around the same age as you and I'm 60 now. I did have surgery on my armpits which I'm glad to say was successful for me. 

    I hope this has been a little helpful to you and please do try to get a referral to a dermatologist. Good luck with whatever you decide to do Janelle.

     

    • Janelle85
      Janelle85 anne21112

      Posted

      The emergency room doctor was a young guy with no bedside manners. He still works at the hospital.

      Anyways, my grandpa, sister and neice all get these lumps on their armpits. I saw it tends to run in families but I have it the worst sad

  • crystal_08850
    crystal_08850 Janelle85

    Posted

    It's probably your bartholin's glands. I would get these sometimes along with my HS outbreaks but it's different than HS. I showed it to my gynecologist thinking I was starting to get HS in my vagina and he said you couldn't get HS there and that it was an irritated bartholin's gland. The same triggers may cause it though that brings out your HS. I stopped wearing tampons and started wearing menstrual cups because the tampons seemed to irritate those glands tremendously when they were inflamed. Maybe something in the cotton?? I don't get the irritation anymore. My HS is also now in remission once I found my food sensitivities/triggers which are nightshades, coconut and nuts. Good luck!
    • Janelle85
      Janelle85 crystal_08850

      Posted

      I do not wear tampons. They make my cramps worse. I do not just get them on the inside. A few outside. I haven't had one open up and leak in my armpits in years but i will get a huge lump that comes up then goes down. My case is a very mild case.
  • hypercat
    hypercat Janelle85

    Posted

    This sounds very much like HS to me.   However no one can diagnose you over the net.  Go back to your doctor and tell them you want a referral to a dermotologist.  You will get a firm diagnosis and expert help in dealing with this.  Doctors don't generally know much about HS so don't rely on their knowledge. 

    The best way to treat a lump which recurs is to have it incised by a surgeon so ask your doctor or the dermatologist to refer you.   I have had several recurring ones and had them incised and none of them have ever returned.  Other ones yes but not those.  x

    • Janelle85
      Janelle85 hypercat

      Posted

      I see my gynecologist tomorrow. Im supposed to get birth control started tomorrow. I wonder if he can get me in with a dermatologist.
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