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Feeling low. Struggling at the moment.

Posted , 16 users are following.

Chrisy
Chrisy

Have been having to treat daily with clob to try and prevent my urethra from fusing totally.  Now on top of that I have an infection and am constantly on the loo.  I do not normally have infections.  Only ever had one once when I was pregnant.  I know that things are going to flare if I am not careful.  Started antibiotics tonight so hopefully things will improve with those.  Due to go on holiday this weekend and we are camping so I hope things settle as I do not fancy running back and forward to the loo (antibiotics give me the runs sometimes as well).  Just weary with all the problems I have at the moment and fancied a winge.  Drinking plenty to try to flush my system.  I found a nurse at my practice who knew all about ls and we had a good chat about things.  She offered to check me whenever I wanted if I was worried about anything.  Instead of being happy with that I have left the surgery feeling very down.  Don't know why!  Just this horrible disease. blah blah blah...........I think I've winged enough.  Sorry everyone...

2 likes, 209 replies

209 Replies

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  • Barking
    Barking Chrisy

    Posted

    Oh poor soul! I couldn't imagine anything worse than camping during a flare up and having to share toilets, put on clob and generally trying to keep clean. I am having to put it on twice a day for 3 months and see where we go from there, but I do feel 'tight' whilst weeing and feel it is closing too much. Ladies on here have been wonderful support and please don't apologise for wingeing - as you put it. We all need to let off steam, so go for it! I am sure that many of the regular contributors will back me on this and I hope that the camping break gives you some calm. All the best.
    • Chrisy
      Chrisy Barking

      Posted

      Thanks for the empathy.  Feel a bit better today and able to cope a bit more with things.  Hubby went out and bought me a porta-potty so I can have some privacy in our tent. We have a two bedroomed tent and we can use one for a toilet/changing room.  He has also got a camping shower so I can wash myself in privacy too.  I love this man, he always seems to be able to work out problems for me.  On the positive I have no more fusing at present things seem to be calmer.  Thanks for caring.
    • Barking
      Barking Chrisy

      Posted

      Glad you feel better today. What a thoughtful, caring hubby you have. Enjoy the trip!
    • judy02533
      judy02533 Chrisy

      Posted

      Chrisy, enjoy your camping trip.  I think it is great that you are going.  Your husband has shown how much he wants you to be with him.  Like many have said on here..live life !
    • Jackiem26
      Jackiem26 Barking

      Posted

      I'm new to this forum and keep seeing clob? What is it please?
    • Jackiem26
      Jackiem26 karen41728

      Posted

      Karen I've never heard of either doc just told me it was lichen sclerosis affecting the vulva , I haven't really got much information, I'm just trying to find my way, just itchy and sore all the time
    • Chrisy
      Chrisy Jackiem26

      Posted

      Clobetasol proportionate, also known as renovate. It is an extremely potent topical steroid. Use sparingly daily at first but then reduce treatments slowly but regularly with a maintenance dose of twice a week eventually.
    • Chrisy
      Chrisy Jackiem26

      Posted

      Jackie look at the beginning posts on this discussion where you can find a link to a webinar by Dr. Goldstein who really explains this condition well. It lasts an hour but is full of valuable info. Called 'new to ls start here'
  • alison54950
    alison54950 Chrisy

    Posted

    I feel the same, some days you feel as if it's under control, others are just a nightmare where no matter what I use nothing works giving me no relief! This gets me down as it's just never ending. I have a vulva specialist appointment in just over 2 weeks. I just hope I get some good advice that u can share too.
    • Chrisy
      Chrisy alison54950

      Posted

      Thanks.  I hope you do too.  We can all use as much info as possible.
  • Guppy007
    Guppy007 Chrisy

    Posted

    LS is life changing, and so it can definitely get you down!!

    What has your consultant said about your urethra? Do you feel like you are getting the care that you need?  Often people can feel overwhelmed and low if they don't feel that they have a good support team around them.

    It would be a shame to let LS spoil your holiday, I certainly wish I was going camping, such fun!!!  cheesygrin

    • Chrisy
      Chrisy Guppy007

      Posted

      Thanks Guppy.  If you read my reply Barking you can see that my husband has come up trumps and will not let this ruin our holiday.  I am no longer under a consultant but with my GP,  they have a practitioner nurse who seems well read up on the subject and I saw her with my UTI she had a good look and tells me that the ls is not active at the mo so I have been able to delay any fusing.  A&E if the urethra closes hopefully not over holiday.
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