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...
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.
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.
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!!! 
Life can be pretty bleak at times and I know from experience there are few people we can off load on- however this is one place you can- so dont apologise. Remember to eat live yoghurt when on antibotics -it helps restore the natural flora of the gut and may stop the squits! Try and squeeze out the las - painful drops of wee - use your spray bottle at the same time - it may lessen the discomfort!
I had an email from my sister saying she and probably Ihave a MTHFR mutated gene that could be a reason for the autoimmune condition! This means that no matter what I eat or drink I can change little, perhaps a tad by eating more green leaves and reducing the wine refined carbs and the sugars - but as my only REAL weakness is the red wine I say a reluctant fairwell to my comforter!
Pecker UP Chrisy when the antibiotic kicks in you will feel a lot better and the weather hopefully will be kind so that you can really enjoy your trip. I emphathise about leaving a listening ear making you fell lower than a snakes belly - somehow by hearing STUFF from informed others can pull our heads from the sand, and make us face our issues!
Take care and hope you have a lovely time Sue
What have they actually said about your urethra Chrisy I do hope the infection improves with the antibiotics especially before your camping trip, if it's not one thing it's another with this bloody disease, at least we have each other to moan to I would be lost without this sight I find it really helps me. Do keep drinking lots of water.
You take care Chrisy I really hope things improve soon Xx
I don't have many suggestions at this point. Just trying to find my way. Struggling right now. But hugs to you. So glad for this support group. It's such a lonely condition to have. do something relaxing!
Christy,
I am so sorry for your discomfort and pain.
LS is a horrid disease and I too am just learning basic remedies to ease the suffering and pain.
Mine is all perianal and hope it does not spread to the vulva etc.
I use the clobestisol three times a day, which may be excessive. However it gives me peace of mind that it may prevent further complications.
Do you have sufficient medical providers?
Elizabeth
Hello,
Do.you find drinking alcohol exaserbates the LS pain and discomfort?
I drink vodka nightly, take a pain blocker and use valium as a muscle relaxer. These helpers allow me to sleep. Some days I wake up.pain free and others it is hell to manage the say without three baking soda baths.
Am I drinking too much?
Elizabeth, I am new to this world, so I am reading all the info I can get on this forum. I try the suggestions and hope to find what helps me. Everything I have read recommends we be very careful with the Clob. I have never read anywhere of using it three times daily. So I wouldn't use it more than twice a day and then I would cut back on that. Do you have good doctor that you trust and you feel is helping you? That is very important.
Elizabeth, It might be best if you decrease alcohol intake since you are also taking a pain blocker and valium. The three together are not really good for you to take. I wish you could find relief. Please be careful.
Chrissy..What a frustrating catch 22 situation. You are using steroid cream daily to halt one problem which is developing another. You don't say how long you have used the steroid daily but it could now be suppressing your immune system leaving you vulnerable to infection you wouldn't normally get. Is there anyway you can cut back on the steroid use. Sending good vibes.
Gosh Chrisy that is a tough one. And camping ... I don't know what kind of camping you do but I bring a sitzbath and try to use it every other day with baking soda and tea tree oil. Especially when it is very hot, going camping has its challenges. I also don't dare swimming in the lakes, afraid of infection. So the sitzbath is my safeguard from things getting worse. I add a big table spoon in the water and a shake some drops with the tea tree bottle.
And of course I don't leave home without the glob. A small amount is sometimes necessary twice a week.
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.
Thanks. I hope you do too. We can all use as much info as possible.
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.
Thank you Sue. I am very interested in this mutated gene theory. Once they find the cause they can hopefully get working on a cure.
Good advice about the yoghurt. Off to get some now. Thanks.
Thanks Karen. Yes I am drinking lots. The urethra has stopped closing for now and the clob has done its job thank goodness. The nurse has said I can get her to check for me whenever I am worried about anything. If you read my reply to Barking above you can see that Hubby has been wonderful. Can't wait to go in the morning and get away for a while.
Hugs back. Kindle at the ready....
Thankyou yes I do. I am a little worried about the three times a day application. Is this what you have been told to do?