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Very Long term sufferer :(

Posted , 3 users are following.

Charliewales
Charliewales

Hi everyone. 

I'm 29 and I have been suffering with these abscesses since I was 13 years old. I have been diagnosed with a condition called  hidradenitis suppurativa, I have had 8 operations over the last couple of years, I have had 5 of these on my rear ( pilonidal sinus) in the last 18 months alone. I am currently in recovery 16 weeks since my last operation and my abscess has once again returned. When I last spoke to my consultant three weeks ago he expressed he would have me back in hospital once again for a operation and also a skin graft , as my skin on my rear is very fragile due to the excessive operations. I have tea current infections , I'm currently on two lots of strong antibiotics once again, I'm now having trouble with all my medication and my body is starting to reject it and is super sensitive to these. Good job. I have a very supportive husband who understands about my condition. As like everyone else I find it embarrassing, most of my family and close friends know about my condition as I had to open up about it, I get very upset and is making me depressed. 

I'm seeing my surgeon on Monday ( last minute app due to abcess coming back few days ago) so everything is crossed as I need this sorting, my work place are starting to get funny with me having so much time off work in statuary sickpay which is rubbish and I'm not entitled to any benefit either as husband works full time. 

Sorry for the long story but good to get it off my chest. Is their anyone out there who suffers like me and has different treatment or who has had a skin graft please comment. 

Thanks Charlie xx

0 likes, 4 replies

4 Replies

  • Charliewales
    Charliewales

    Posted

    I'm now waiting for a MRI scan and a skin graft. Anyone else had this ? 
  • PlymouthPete
    PlymouthPete Charliewales

    Posted

    Hi, I've had 15 operations on my sinus and have just had the results back from my MRI and it's still there. I have to see the pain team at the end of the week as the painkillers I'm on are not working very well and my GP is reluctant to put me on anything stronger until I have seen them.  

    I can't believe how poeple have to suffer with this condition and no one seems to be able to give us a real solution to what is essentially a disabiltity when it gets into the further stages.

    I know it's not much but there are people out there who are in the same situation as you and it's awful that no one can really help us as they can with other medical conditions. 

    • Charliewales
      Charliewales PlymouthPete

      Posted

      I thought I had replied to you but it's not showing up. 

      Well been just over two weeks since I last seen my consultant and still waiting for a date for my MRI scan. I have now also had a abcess appear under my breast so back to the doctors tomorrow I'm sick and tired of all this trouble. 

      How r u doing ? 

  • seth16
    seth16 Charliewales

    Posted

    Do you have a good colon rectal surgeon?

    I have finally got a mri scan after two years of asking, its riduclous

    So many people are suffering and the doctors still dont have a definate cure or reason.

    Thanks

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