LS and urinary infections

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Hi, fellow suffers!

Three years ago, I developed an intense itch, along with recurring and severe urethra/bladder infections.

I have since had 11 courses of antibiotics, a cystoscopy, 2 ultrasound scans, a CT scan, and several urologist appointments. Plus a dermatologist appointment. Nothing was found to explain my symptoms.

However, now, three years and much pain and anguish on, another referral to a dermatologist, plus a biopsy and blood tests, plus an infection in the biopsy site, plus yet another urethra/bladder infection, the biopsy has revealed Lichen Sclerosis, and the blood test has revealed \"antibodies against the Thyroid\". At last! A diagnosis!!

All the doctors I have seen have denied any connection with the (now known) Lichen Sclerosis, and urine infections. I find this astonishing, as the two have always come together.

Has anyone else experienced both together, and has anyone here had a doctor accept that there is a connection?

I have found this condition a very lonely place to be, it's depressing, and I find it difficult to confide in others about it. I have also found the doctors I have seen about it, rather uncaring and disinterested.

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7 Replies

  • Posted

    hi there ,

    we seem to have a lot of similarities, firstly i have a family history of primary billiary sclerosis a maternal aunt and my mother (age62) both suffered,my mother also had lichen symptoms but was diagnosed pruritic.

    i am 43 and suffer hypothyroidism and both oral and skin lichen planus and am awaiting dermatology and gynacology appointments. i recently underwent a full hysterectomy due to years of never ending and profuse periods which left me still bleeding and now with recurring seemingly constant urine infections tried every antibiotic they have to no avail, have read about lichen sclerosis and informed my gp and now am seeking any help i can get,i have three daughters and am concerned for there futures too,thanks for sharing your experience now i dont feel alone it is real gps dont seem as well informed on quite a range of subjects they are the people we entrust our health too and all to often it is us ourselves and this great resource the w.w.w that gives us the answers :D

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  • Posted

    Hello, again

    Yes, you do have some similarities to me. I've had a history of gynacological problems, ever since puberty.......many, many, years ago!

    I've had several ops for polyps and fibroid removal, and an endometrial resection. (naturally always followed by urine infections!).

    I had a squamous cell carcinoma in the vulva 26 years ago. The GP didn't know what it was, and I had various creams to try, and eventually got sent to a gynacologist because I had also had a very premature menopause, in my thirties. Anyway, the Gynacologist recognised the growth straight away, and I was whipped in to have it cut out.

    My dad had psoriasis all his life, and I have got lichen planus on my gums. I forgot to tell the dermatologist about that, and also that I have inflammatory arthritis. It's difficult to remember everything at these appointments, isn't it? So, I suppose autoimmune disorders run in the family. I shan't know about what the antibodies against my thyroid means until I see the dermatologist again in January.

    I don't understand why GPs in particular seem to have so little understanding of LS, or it's effects. It's not like it's a new condition....it's always been around.

    From what I've read, most people seem to have suffered for some time before it got diagnosed, which doesn't seem right in this world where there's a test for everything.

    I've often wondered why it's such a miserable condition to have. I suppose it's because it's so uncomfortable all the time, and it makes me feel a bit unfeminine, and sort of like I've got diseased 'privates'. I've found it embarrassing to tell even my daughters. And the urine infections have made me quite paranoid about going anywhere....they erupt so suddenly.

    I'm sorry about your hysterectomy. Are you back on your feet again? Are your daughters being helpful? I hope the LS or LP doesn't erupt too much with the stress of it. That's all you need!

    Look after yourself

    Tweetie.

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  • Posted

    I, myself, have had LS for a number of years - diagnosed around 2-3 years ago.  I was getting urine infections more & more regularly leading up to diagnosis.  I now have good times and bad using steroid cream, anti yeast tablets and antibiotics for skin infections.  I have had 3 urine infections in as many months recently so, in my mind, there is definitely a connection.
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  • Posted

    Hello everyone, the posts are a year old so hopefully someone will still read mine.  I just opened the forum because it suddenly occurred to me that my urine infection was  connected to my lichen planus.  I was diagnosed with oral LP by my dentist about 2 years ago.  I had never heard of it so I extensively researched online on the subject and found out that if you have it in the mouth, most likely you have it downthere too since it affects the mucus, and I do.  I never made much of it because it only appeared as bright red vulva and occasional itches.  LP in my mouth comes and goes so I'm just determined not to worry about it.  But a few weeks by accident (the test was for something else) they found I had urine infection, enenthough I didn't really have burning symptoms etc.  So my doctor gave me antibiotic for 7 days but it did not do anything, the culture results came back with flora contaminated which is infection.  My doctor said if I should get UTI symptoms I would go back to antibiotics.  My doctor is also the one who had no idea what lichen planus was when I mentioned it to him a couple of years ago - None.  So now in the case of urine infection, he has not made the connection, I am the one who now thinks that the two are related.  So much for medical knowledge, right?  Anyway, was nice chatting with you all..i hope someone will read me.  

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    • Posted

      I too have repeated urine infections, my gynaecologist tells me it's not connected to my LS and that's not his area. It must be connected I think, I have to start all over again now and referred to the urologist. aarrhhh...lol xx

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    • Posted

      Hi,have recently joined the forum after being diagnosed with LS six months ago. Sorry I can't help with the antibiotic connection but I think using the Clob

      steroid is giving me UTIs.Am going back to my dr to ask if there could be a link, as I never had them prior to using Clob... coincidence maybe? 

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  • Posted

    I have been experiencing both together for years now. I get utis chronically.. probably 6 a year and then an additional 2 or 3 that have uti symptoms but do not show the bacteria. I've never had a doctor acknowledge them as being related but it is interesting to know someone else is experiencing the same thing!

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