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LS and the effects on the urinary tract

Posted , 11 users are following.

njacksonl
njacksonl

Has anyone experienced any bladder symptoms that have been linked to LS? I've recently passed blood (a lot) in my urine and there was no infection and I've experienced bladder aching. I am having this investigated separately but wondered if anyone had anything similar that was linked to LS, because my Urologist says its not linked, but I'm not sure.

1 like, 15 replies

15 Replies

  • Guest
    Guest

    Posted

    Oh yes..I know all about bladder problems with LS...definately linked...Never had it before LS ...Have peed rosea wine for england and bladder ache, excruciating pain and throbbing down below...I have to take a special urnine test as soon as the next flare comes to see whats what.......Lots of threads on this on the other site as bran says above......xx
  • njacksonl
    njacksonl

    Posted

    Hi Marilyn - thanks for your input, I'm seeing my dermatologist tomorrow so I will check it out with her aswell. If I get any information about it I'll let you know. I couldn't see \"brans\" comments that you referred to. Which other site are you referring to please?
  • Guest
    Guest

    Posted

    the site Bran means is to click on the messageboard found on the homepage at ****... halfway down on the left and then when open, below the flowers, click messageboard again..lots of us are chatting about urinary symptoms with LS, auto-immune problems and the lists and loads of LS comments..This site and **** seem to get the responses we all need......good luck tomorrow with the derm..keep us posted and tell the girls on the other site too....Malx

    [color=blue:57b1ed8c43][size=9:57b1ed8c43][b:57b1ed8c43][i:57b1ed8c43](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:57b1ed8c43][/b:57b1ed8c43][/size:57b1ed8c43][/color:57b1ed8c43]

  • marilyn49
    marilyn49

    Posted

    I apoplogise for including a name..I got carried away, as you do...I will not include that type of information again... sad Malx
  • Guest
    Guest

    Posted

    Hi Njackson1!

    How are you doing? How did your appointment go. I too have urinary symptoms but think it is attached to LS.

    May

  • njacksonl
    njacksonl

    Posted

    Hello all who've been with me on my urinary tract journey. My dermotologist and urologist both say that the blood in my urine is definately NOT to do with LS. If one of them had said yes and the other no, than I may have had second thoughts, but both of them? Anyway, I've had a flexible scope up to my bladder to check it out and all was well, except that in the process of trying to get the tube into my bladder, they split my skin in the genital area as its so sensitive and I bled a lot from the skin being broken. So be aware anyone who has this procedure who has LS, your skin will suffer unfortunately. Its OK now. I'm now having a CT scan of my kidneys, but the urologist isn't expecting to find anything. He can't explain the blood loss, but I haven't had it for over 3/4 weeks now so the urologist thinks its just a \"blip\". But the important thing for us all is that both specialists say that blood in the urine is not linked to LS.
  • Guest
    Guest

    Posted

    Ls does not directly cause bladder problems but LS treatments can annoy the urthrea. in my case creams that are watery and runny tended to cause me problems as i believe they can run into the urinary tract.. I had that happen a couple of times. My worst bouts are a couple of days after trying sex...I have stopped now as the cystitis was so severe and was peeing wine for a couple of days..I was again on anti-biotics...I now have been given a special sampler to use next time I have a bout and then i can get it tested with the doc etc., and see what is causing it for sure....I use only the ointment that looks like vaseline as a aqueaus wash and that is great..Mine brand do a cream wash in a dispenser and that too annoyed me..
  • Kate_Gilbert
    Kate_Gilbert

    Posted

    Hi. I see this thread has been quiet for nearly a year but regarding bladder problems with LS I'd like to share my experience. I had a diagnosis of LS four months ago after years going undiagnosed. By the time I got the diagnosis I had lost my inner labia and sex is impossible because of narrowing of the introitus. Anyway, have set off with the eumovate and also have tried to use vaginal dilators. Twice in the last four months, once after trying sex and once after practising with the dilators, I have ended up with all the symptoms of a urinary infection. Just off to the doctor's again! :roll:
  • ann41183
    ann41183 njacksonl

    Posted

    Hi I was diagnosed with LS on Tuesday and am feeling quite down about it as I have other health problems. This condition sounds terrible and I like many are worried what the progression will be. With regard to the urinary problem I have noticed in the last 2 weeks that when passing urine it is stopping mid flow which is not normal and also I keep getting the feeling I am getting cystitis I have a constant small ache in the bladder and it may ease and then come back again 
    • njacksonl
      njacksonl ann41183

      Posted

      Hello Ann, sorry to hear about your diagnosis and understand how you feel as I felt much the same myself.  I've now had LS for about 12 years and for the most part its OK but I do have to manage it carefully, otherwise it flares up and is a problem.  Over the last few years I've been getting repeated urine infections so I have had them investigated.  My urine flow also felt a little restricted in that the urine didn't flow as quickly as it used to.  I have now had two bladder dilations (over 3 years) which have given me some relief, but the infections still occur.  The urologist said that the LS can contribute to bladder problems, but he tended to lean on my age and said that repeated urine infections do occur in ladies of a more mature age (I'm now 69).  He said that using the Ovestin hormone cream will help and I have been using this now for about 4 years.  I also use Dermovate for the LS and Hydromol ointment to protect my skin on the genital area.  I've had biopsies done a few times because I had some white patches but they turned out to be fine.  The secret is to have a good dermatologist who checks you regularly and managing the condition yourself with the dermovate, ovestin and hydromol.  My local hospital has just started a Vulva clinic and my dermatologist has transferred me over to them.  I had my first appointment a couple of months ago and felt much more confident in the consultant because they are actually specialising in the genital area and see lots of LS cases and are up to date with the latest data.  I thought I had it under control, but when visiting the Vulva clinic they said that I was having a chronic relapse so I'm currently using the Dermovate once a day for a month, one every other day for a month, then twice a week for a month, and then I go back to see her.  It never goes away and sex with my husband is difficult and painful, but he is very understanding.  I've come to terms with LS by thinking that there are other people who are a lot worse off than me and providing none of my white patches turn nasty I can live with this disease.

    • ann41183
      ann41183 njacksonl

      Posted

      Thank you for your reply. The dermatologist I saw just said your labia has fused together and gave me a leaflet told me to use steroid cream and not to wash with soaps and I mentioned to her do I need regular checkups? She said no unless you notice any lumps or bumps gave me a leaflet never asked if I had any questions couldn't wait to get me out. I felt very upset and disheartened about it all I feel a bit let down because I would like to see if possible, a specialist who could check regularly and put your mind at ease. Do you see a specialist and are you checked on a regular basis? Thanks again for your help.

    • njacksonl
      njacksonl ann41183

      Posted

      Hello Ann, not sure where you are living as the website is global.  However, in the UK I am under a dermatologist and have been seen by her about every siz months, ever since I was diagnosed.  I was signed off at one point, but I had a small issue and went to my doctor who referred me back again to the dermatologist. I did ask my dermatologist that because of the difficulties the NHS are experiencing would I again be signed off and she said no.  The dermatology department has now started a new vulva clinic which specialises in anything to do with the genital area.  The specialist I see there is very knowledgeable and kind and has assured me again that I can continue to see her on a regular basis.  This may vary of course depending on how my condition is fairing at the time.  I'm sorry that your dermatologist didn't spend time to explain things to you, perhaps he/she wasn't that familiar with LS?  Its such a difficult disease to live with with no apparent ending in sight, so having your mind put at ease is essential and you should pursue this through your GP or Specialist.  As a fellow sufferer I can only say that once you learn to manage the symptoms it is easy to live with this disease, but when it flares up it can be an awful experience and its then that you really need that support.  Hope you manage to get this........keep trying and don't give up.

    • ann41183
      ann41183 njacksonl

      Posted

      Hi

      Thankyou ever so much for your advice it's really appreciated. As I live in London I thought help would be pretty good! But I shall speak with gp and see what happens funny enough I went to a vulva clinic but not very helpful I shall see if I can see someone else. The dermatologist at the time said it's very common I've never heard of it before it's a shame it's not more documented sites like these are invaluable. Take care and look after yourself 

  • Guest
    Guest njacksonl

    Posted

    Hi I've also just been diagnosed this week with LS. Mine started with terrible pains in my pubic area as if one the pubic bone either side of my labia, when these pains and itching are really bad it seems to radiate Through to my lower abdomen and feels as if I need to pee. My gynaecologist couldn't explain these pains and said it wasn't related to LS but I wonder if they haven't actually experienced these conditions themselves they don't have all the answers!

    • njacksonl
      njacksonl Guest

      Posted

      Hi there, sorry to hear about your diagnosis, its an awful blow and I do recall feeling very depressed about it when I was first diagnosed, but over time (and its been 12 years) I have learned how to manage my condition and only have chronic flare ups now and again.  I have to say I've never experienced any pain in my labia area, just terrible itching.  But if you feel the need to urinate more I would get a urine sample checked by the doctor just to make sure there isn't an infection.

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