New member struggling with HS

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Hi there,

I'm so happy to have found this group and to know I'm not alone. In November 2013 I was diagnosed with HS, I have never heard of it before. Last year I had 4 surgeries under my armpit, 3 dranage and insisions and on the 4th surgery they removed the tracks. I was then left with a big whole that was too big to pack so I was put on a vac machine for 3 months. After the 3 months I still had to go to the surgery to have it packed everyday. Last week I had to have surgery on my inner thigh to remove an abscess. My doctor has now put me on Tetralysal antibiotic long term. Has anyone else taken these?

Also now the skin has closed under my armpit I have limited movement and finding daily life a struggle when having to do things, does anyone else have the same problem?

Sorry to go on im not getting any answers from my doctors sad

Thanks Angel x

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6 Replies

  • Posted

    Hi Angel, I'm sorry for what you are going through. I can sympathize as I'm having surgery to remove tracts from the side of my groin area (right where my underwear line is)next week. Please excuse my ignorance but what is a vac machine? What does it do?

    As for antibiotics, I've been on doxycycline but I've not beej told to take anything long term.

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    • Posted

      Hi Meagan,

      Thank you for your resonse. Sorry to hear you will be going in for surgery and I hope it all goes well for you.

      A Wound Vac Machine is a device that consists of a dressing which is fitted with a tube and attached to the wound VAC. It is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened. It helps the wound to get smaller and pumps any unwanted fluid out of the wound.

      Angel x

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  • Posted

    Hi I am sorry you are suffering like this.  I had a friend who was left with scars under her armits due to HS and she couldn't raise 1 arm above her head   She had surgery on them and said it did help but not a huge amount. I presume you are seeing a dermatologist?  If so have a word with them about available treatments. All the best  x

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    • Posted

      Thank you for your resonse, I am unable to raise my arm or pick things up off the floor it's so frustrating. I am not seeing a dermatologist at the moment. I have asked my doctor but he wants me to try out the long term antibiotics first. I'm going to keep pushing to be referred.

      Thank you

      Angel x

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  • Posted

    Hi tell your doctor to stuff his ab's where the sun doesn't shine!   Don't ask to see a dermatologist but demand a second opinion which is your right.   Don't be put off and keep to your point.   But you need to see one.  Ok?   x

     

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    • Posted

      Thank you for the advice. I have made an appointment with the doctor and I will demand for a second opionion as I need to get this under control now as it seems to be taking over my life.

      Angel x

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