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LS on urethra - anyone?

Posted , 10 users are following.

dani2590
dani2590

Hi all,

So I actually feel like the only woman in the world that has LS on her urethra sad It's actually on the urethral meatus around my pee hole. My doctor said it is an usual place for LS to show up but it can happen.

Having the LS on this area is not affecting my urine flow or anything but I have urethral pain more when strain and sometimes symptoms of UTI.

Does anyone have LS on this area of skin or no of anyone that does? I feel so alone. I'm thinking of going to a urologist just to make sure everything internally is functioning normally!

2 likes, 18 replies

18 Replies

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  • Wil816
    Wil816 dani2590

    Posted

    My first big flair-up was around my urethra. I was getting frequent uti symptoms. I couldn't sit down and I was urinating every 15 minutes. I went to my Gyn who was not sympathetic at all. I then went to a clinic where I was prescribed Cipro. The Cipro made things worse. I finally went to a Uro-Gyn who did a cystoscopy to rule out any bladder problems. I had a mild uti. She prescribed lidocaine for the pain around the urethra. Once the uti cleared up I went to my dermatologist who prescribed clobetasol for the LS. It took a while for the uti symptoms to get better but they did. I Changed my diet and started taking supplements. Some people have said that d-mannose (a supplement) didn't work for them. I found that it worked for me. I initially took it every two hours for the first of couple of days. Now I take it daily for maintenance. I also did castor oil rubs on my abdomen which helped with the bladder pain. Occasionally, I feel it acting up when I have sugary foods or wine. I just cut the stuff our and drink lots of water. This has worked for me. Good luck...
    • cynthia40883
      cynthia40883 Wil816

      Posted

      Did you get another antibiotic for theUTI?What happened with the Cipro? I am afraid of getting a yeast infection by taking antibiotics, on top of the LS. I have it in the urethra.2 urine cultures, not growing any bacteria of significance. Did the lidocaine, I have some, irritate?Also have clobetasol,afraid to use. How did you do with that?Are you under control, after all of that?
  • hanny32508
    hanny32508 dani2590

    Posted

    What I would like to ask you - did you first notice something unusual,when your blatter didn't entirely empty during a bathroom visit?
  • dani2590
    dani2590

    Posted

    Thanks for the replies. I may arrange to see a urologist. Hanny - yes as a matter of fact on a number of occasions I felt like I didn't empty my bladder after going to the bathroom and that the urine was flowing out slower and I almost had to strain. But it's only happened 3 or 4 times over many months and I thought it was strange but brushed it off. Maybe there is some connection??
    • hanny32508
      hanny32508 dani2590

      Posted

      Well, I'm trying to trace back the earliest symptoms of LS.  And I had exactly that - the feeling that I wasn't able to empty my blatter entirely.  But just like you - I brushed it off.  But had numerous bladder infections and medication to fight that.  Next to a narrowing/tightening of the vagina.  Are these a combination of the earliest symptoms, I wonder.  
  • UlliS
    UlliS dani2590

    Posted

    I thought I was the only one suffering from urethral problems in connection with LS. I´m sorry to hear that you have the same experience but in a strange way glad not to be alone. My urethral pain started later than LS in the rest of the vulva but are since then actually a much bigger problem for me than the vulvar soreness and scarring (which are also a burden). I have from time to time severe pain and urgency, especially after trying to dilate the vagina or after bicycling or horse back riding (which I manage to do with much lubrication, bicycle pants and other protection although it is bad for my condition). The doctors never confirmed that my urinary problems were due to LS but I am sure there must be a connection. Only seldom, it was a real infection and if I put pressure on the urethra, it is very sore even when I don´t have a flare up. The urgeny problems have become slightly better during the years but the pain is sometimes unbearable. I almost would like them to cut off the nerves, so that I wouldn´t have to feel anything. This area is extremely sensitive. Did your doctor have any suggestions how to deal with this pain?
    • cynthia40883
      cynthia40883 UlliS

      Posted

      what lubrication do you use,that doesn't irritate? I feel that if the dryness hadn't occurred, the PH wouldnot have gotten off balance, and that is the key to LS,in my opinion and limited experience....PH. I had 2 veryy stripping occurences prior to getting this. 1.I had a cystoscopy to look at frequency issues. They used a cleansing agent, before the procedure, maybe betadine, not sure. I had severe inflammation for 2 weeks after,but recovered. 2. The mild cleansing agent, Moisturel, that I used for 20 years, was discontinued,so I tried various other products(non soap).....should have just used plain water.Another stripping issue. Partially recovered from that. Moved to a house with well water,R/O system in place, but not maintained properly, therefore water was very acid. From the moment I started taking showers with this water, I deteriorated with inflammation. Started using bottled water soaks, but damage already done. Afraid to use clobetasol or anything at this point. Doc. is not happy with me, for not trying Clobetasol. Be careful of water quality,better to stay with city water, as they control PH.Found a Vulvo Clinic in Phoenix. May consider going there.Going to Derm. doc who sees many patients with this,but not getting much help.I have not had a biopsy.What does anyone think about the necessity of a biopsy?
    • hanny32508
      hanny32508 cynthia40883

      Posted

      My experience too is that PH balance is connected with LS.  Therefore the use of baking soda/bicarbonate rinses after every bathroom visit makes a big difference for my LS.  Calms the LS.  It also makes good sense to follow an alkaline diet - no gluten, no dairy, no sugar, as the main non-ingredients, as what not to put in your mouth. For 'cleansing' I sit in a baking soda bath every other day.  All helps to keep LS at bay.

      Biopsy is needed to establish a solid diagnoses.  Globetasol can be used in tiny amounts, again, to keep LS controlled. 

      There are many factors that seem to play a role in controlling LS. Another is the estrogen level. I also take hormone replacements. (not premarin) and extra supplements.  LS is high maintenance, really.

    • cynthia40883
      cynthia40883 hanny32508

      Posted

      Thank -you, Hanny, I appreciate everything you are saying. Can you be more specific on the hormonal treatment,exactly what it is, oral or otherwise?I am post menopausal,and the only hormone that most will order for me is Estrace,which is a topical low dose estrogen. It could help to some extent, but I am too sore to take the chance to apply. I wonder if an oral HRT would help, or a patch?Could you also be more specific on your supplements? I take coq10, Vit.D, Lutein, Morenga(which is a superfood powder from the Amazon. I have greatly reduced sugar, as I am prediabetic,and am working on Gluten. Still afraid to try chlobetasol. Did it burn at all when you used?I have the ointment.   Cynthia
    • hanny32508
      hanny32508 cynthia40883

      Posted

      Hi Cynthia,

      I too use a topical low dose of estrogen called Bi-Est. It's applied in the vagina.  Then I take progesterone in capsule form.  It does make a difference for me.  Perhaps also because I have had a total hysterectomy and have malfunctioning adrenal glands, which is a double wammy; no hormone production therefore, not even for post menopause.

      I use vit. C, B combo, Vit D, Omega 3 with LS in mind.  

      And I use very small amounts of Globetasol. It is to keep LS under control. Once, sometimes twice a week. (no more than pea size, less I think) No more soreness.  The amount I use will not burn at all or so little that I don't even feel it anymore.  Globetasol is key, especially in the beginning of your treatment.   

      Did I mention coconut oil for moisturizing? Also used Emu oil early on and that was very soothing, but for me less affective than coconut oil.  Sometimes I use Calendula oil. LS likes a bit of variety sometimes.   

         

    • dani2590
      dani2590 UlliS

      Posted

      UlliS I'm also starting to think that the urethra is causing me a lot of more problems than the LS on the vulva skin.

      I notice the soreness and urgent need to urinate comes after having intercourse or sitting for long periods of time which puts pressure on the area. I was so sure I had an infection I went to my GP who tested my urine and said that it was clear. Does LS ever affect inside the urethra? I'm terrified it will spread inside!

      Like you said the area is very sensitive. It is an awful spot to have LS. I would also like to cut off the nerves so I didn't feel anything! It makes me so miserable, especially because it also affects my sex life now sad I'm thinking of seeing a urologist.

  • theresa85496
    theresa85496 dani2590

    Posted

    My LS has started to go to the anal area I have IBS going to the bathroom is bad enough but with the LS it's terrible
  • winifred02134
    winifred02134 dani2590

    Posted

    Hi dani , Sorry your in so much pain, l too suffer in this way , l am seeing a urologist now and am having tests done l have had a uroldynamics test done to measure urine coming out and the amount of water going in , they found l still had 175ml ,s of water left in the bladder when l thought l,d emptied it , also the urine flows slowly. Tomorrow l am having a kidney scan and next week a cystoscopy done . l also started to see a gynercologist at the same time , she did a biospy , l started these tests last November and will see the urologist on Feb 20th for his verdict and the gynercologist in March for hers . Between them l am hoping for a way forward hoprfully pain free ! You must get yourself checked out in  the same way , l had UTI,s constantly they got worse because l dithered each time , thinking it might be the LS but mostly it turned out to be an infection. Basically check your water first dont delay , delay could at worse be trouble for your kidneys if the infection reached them . l think LS causes the UTI,s its all linked . Hope my story is of some help to you , you are not alone . x
    • dani2590
      dani2590 winifred02134

      Posted

      Thanks for the reply. I actually took your advice and went to my GP to have a urine test done as I was so sure I had an infection. The results came back clear though.

      I find it is worse after intercourse for some reason.

      Can LS affect inside the urethra? Like I mentioned in a previous post I'm terrified about this scenario!

      I'm thinking of seeing a urologist too to get some advice as its making my life miserable. I'm 25 but feel like a 90 year old woman. Do let me know how your appointment with the urologist goes and what he/she suggests.

    • winifred02134
      winifred02134 dani2590

      Posted

      Hi Dani , glad to hear you are clear of UTI,s , its best to check . I was always told that you should wash after intercourse after having a wee , passing urine flushes out anything bad , you could use whatever you use to moisturise the area with to finish off . I feel a lot like what you describe today l had my cystoscopy yesterday and am rather sore l have put vaseline on to sooth it.

      y and the area around the vagina is very sore l have put vaseline on. The cystoscopy was painless and revealed everything normal , l need oestrogen because l am dry inside and not empting my bladder properly the muscle is slack the oestrogen will help all this plus it helps the LS . The nurse gave me some good advice she said sit on the loo for 5mins after you think your finished and you will wee again and then your bladder will be empty , leaving water in the bladder leads to infections . I tried it and it works ! Also drink lots of water.

      The urologist did say l had scarring very near the urthera

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