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HS & Lymphadema

Posted , 3 users are following.

sickofdocs
sickofdocs

Hi All,

I am new to this group, but happy to have found it...  I have suffered from HS for 37 years... saw many doctors and no one could diagnose me until 15 years ago...

I am currently on Humira which keeps it more contained but never gets rid of the condition and I have had multiple surgeries.  The most recent one 6 mths ago which I now have Lymphadema and still have an open wound.

I am constantly in pain and contstantly exhausted and constantly feeling unwell but feel like no doctors are listening.... 

Just wanted to feel like I am not alone.  Has anyone else got lymphadema after a HS surgery?  Do any of you feel contantly exhausted?

Thanks

1 like, 2 replies

2 Replies

  • tj268
    tj268 sickofdocs

    Posted

    Hello sickofdocs, I hear what you are sayong though I don't have lymphedem. I have had HS for over 10 years now and have a bad one right now. It is so frustrating there isn't a cure! Many docs do not know or understand this disease and I ctually had to dx myself and have dr's agree with me, which they did. You are not alone, I am also constantly zapped of energy and in pain. I also suffer fron other autoimmune diseases which doesn't help. I have contemplated surgeries but am still undecided though I am getting pushed to the point  but dr sid he would do groin area because it just comes back and the pain and recovery is too terrible. There are a lot of people here, and I am sure someone will related to your lympedema. SO SO SO  sorry youare going through this too, but again you are not alone. Best wishes!

    • julie01285
      julie01285 tj268

      Posted

      Ihave kept mine at bay although not officially diagnosed with antibiotics such as amoxicillin .They are referred to sa bartholins or sebacious cysts but so regular over the years know probably genetic & this condition more likey as untreated lichen sclerosis & PCOS too. Have recently been oficially diagnosed  with lipo-lymphoedema  & believe there is a genetic link to sepsis & many severe conditions .Originally had them drained by A& Es or given antibiotics .But have noticed with preventive  ones for utis acute 3 weekly if go out of sink or forget the lumps rise with an itch vulva ignored by GPs which is very worrying as a sign which needs follow up.

      As for insects, chemicals , metals oh dear?!

      They are now saying  accupuncture cupping  could help but therapists wary ..

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