Hi all I am new and have so many questions??

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after several trips to my GP then Gyno I am waiting to se Derm.  Long story short I have no confirmation but the Gyno. Is saying I gave H.S.   I have it in my groin. And I'm not sure if this is an accurate diagnosis.  I've been waiting and wondering and have been on different med. and of course discomfort and pain.  I'm hoping for answers soon! Can H.S. Stay in one area (groin) or will it eventually show up in other places underarms etc. also I have a small out break on my butt and today I have felt lots of tenderness and soreness through out my entire butt muscle and thighs, is this common? The pain I feel in my groin area is more located near my vagina it is a weird pain that is had to describe. I can't find anywhere that people describe the pain that I am feeling. I was told it is a mild case and I am on antibiotics now for an infection in my cervic which was a surprise as well. I'm so confused! Any suggestions, I would appreciate greatly! Thank you

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  • Posted

    Hi I am sorry you have received such a diagnosis as I wouldn't wish HS on my worst enemy.   However best to wait until your dermatologist confirms it.  In my experience doctors don't know much about it.

    In answer to your question - yes it will spread unless it is caught early (mine wasn't unfotunately) and aggressive treatment is essential to stop it spreading.   There are many more treatment options available if it hasn't spread.  The more it has the less options are viable.   The emphasis has to be on stopping and controlling it in one area if possible.  

    I too get a sore tingling sensation when an outbreak is occuring and I think this is quite common.   I will have a look and will get a bit of redness (which is infection).   I think the widespread tingling you feel though is more related to the infection in your cervix.

    The most common place to start is underarms and the second most is either in the groin area or top inner thighs.   Mine started on the inner thighs and has now spread to my stomach.  If you get any outbreaks you need to go straight to the doctor to get ab's.  Do not leave them and most of all do not squeze or prick them as you risk making them worse,  causing more damage to your skin,  and spreading the infection. 

    There are a few members here with a great deal of knowledge and especially one called atticus who has a lot of knowledge about HS and I hope s/he comes in. 

    Try and push for as early an appointment as possible with your dermatologist. 

    I hope this has helped a bit.   x.

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    • Posted

      Thank you 🙏🏼 this was very helpful I am pushing for a dermatologist! This not knowing is stressful and these symptoms are something I've never had.  My Gyno hold me to read more about it I wish she hadn't unless she knew for sure. I'm will continue with the antiobiotics and I have to wear different clothing it's not a big  thing I know but  No more jeans it's very uncomfortable. All this is very different. I have so many unknowns. Thank you again,
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  • Posted

    Hi there!  I too am sorry you are dealing with this.  I have had it for 15 years and counting.  It gets worse with age I am told and also have learned this with age.  Mine started near my tailbone area, which in my experience is the worst pain in the world.  When I get them there it a huge tight lump of infection and I can hardley move, sit or lay down. Antiobiotics have stopped helping me over the years.  I now have them on my inner thighs and all around the bikini area.  They are always there no matter what I do.  I get rid of one and 3 more pop up.  I recently went to a specialist about the option of surically removing my sweat glands in the infected areas but the surgeon said it is not guarenteed and its an excruciating surgery that I may never recover from.  So basically my only option is to live with it.  I hope you find better answers and find some relief.  If I went to the doctor everytime I had a flare up I would be there everyday. So I have taken matters into my own hands and it's probably not the best remedy for everyone but when I have a bad one I sit in a tub of hot hot hot water (it helps with the pain and brings the absess to a head where it can release on it's own) Then i apply Neosporin ointment to a non stick guaze pad (Bandaid brand is the best) and place it on the absess to catch what comes out and it makes it more comfortable to wear clothing.  The ones I have had drained surgically always come back and I can't be on antibiotics every day for all eternity, so this is how I handle it and it has helped me live a more normal functional life. (Thank God I have an understanding husband)

    I wish you good luck and let us know how you're doing!

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    • Posted

      Thank you for sharing, I appreciate all insight and advice as I am still waiting to get to the dermatologist.  Meanwhile my symptoms progress and manifest.  I don't have too much topically but the pain has increased which confuses me more.  I can't find too much about early stages. I'm just tired of  not knowing, pain and sleepless nights.  I'm thinking sense I don't have a severe outbreak of lesions or cysts/boils which is what seems to be the primary symptom this sharp nerve pain could be something else??? Just don't know..... I will see. Thank you again and anything to share about the very first symptoms would be appreciated 
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  • Posted

    I'm new on forum actually registered to post a reply to you valerie20628. HS well it sucks! I'm in US have had incidents, flareups, outbreaks or episodes for 15+ years. I don't know what stage every time I see Dr GP, GYN or Derm they all want to have me take Antibiotics for rest of my life etc.

    I want to give you the 3 most important things I've learned to help my HS situation:

    1) STOP SHAVING affected area with a DISPOSABLE RAZOR PERIOD!! Seriously, I've had more issues SHAVING bikini area is in shower than any other trigger. However, even if you have hay fever still need to mow the lawn (lol) I advise getting an electric razor I have less issues and working on getting laser removal.

    2) DON'T use soap with perfume, collegen, moisturizing etc I've found good old plain unscented white bar DIAL soap is good.

    3) I live in desert so I get dry skin on arms legs etc but DON'T use lotion on my upper inner thighs & derrier because it exasperats condition by clogging pores blocking sweat glands causing cysts.

    Hope this helps. Do research HS online and ask family members if they have condition I am of the school this is hair follicle related (I've seen 2 hair shafts from one pore or follicle which can lead to plugging then cyst) and think this could be genetic.

    Good Luck!

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