Has anyone ever tested positive for leukocytes in urine without having a UTI?

I am waiting on a biopsy to be officially diagnosed but I started clobetasol once a day, every other day for LS. My OB and dermatologist both said my case is mild so I'm assuming I'm getting the proper treatment. The first two weeks on clobetasol were great and most of my pain was gone. This last week, the pain came back, possibly worse. I couldn't test for a UTI because I was on my period which can yield false positive results. I'm still having pain throughout the day and more when urinating, but not every time. I can't tell if it's urinary or outer pain but seems more outer. I tried testing with a UTI test and the leukocytes came back positive immediately. I'm still not fully convinced it's a UTI and was hoping to avoid a trip to urgent care in the morning. Has anyone tested positive for leukocytes without a UTI?

hey guys, I need someone’s input on this. 3.5 years ago I developed intense vaginal itching out of nowhere. I thought it was a yeast infection and took medicine for it but it did not get better. I went to urgent care and was tested for BV,yeast, and the most common STDs. I was placed on Flagyl (just in case) which resolved my symptoms. When my results came back, everything came back negative (including BV). Everything went back to normal, until 5 months later, I had sex with a new partner and contracted HSV2 (positive swab). I had a pretty bad first outbreak (no classic herpes symptoms like no sores but I had heavy vaginal discharge, tender pelvic lymph nodes and flu-like symptoms). Since my HSV2 diagnosis, my vagina has not been the same. When I have sex, it is SO painful. It feels like there are paper cuts inside my vagina. I also am SO itchy, I could and have scratched myself raw. I also develop these fissures on my vagina, perineum and also my anus. When I poop, it hurts SO bad. My symptoms come and go, but are mostly present. I develop these cuts and tears after sex and after I poop. After sex, my vagina is RED like tomato red and so inflamed and swollen. I also will get these abscesses in my perineum ( I get like 2 a year ) that are SO painful. I was seen by a GI doctor, who did a colonoscopy and everything was normal, and was given a nitroglycerin ointment for my anal fissures. My gynecologist prescribed me estrogen cream. The estrogen cream and the nitroglycerin ointment help but the symptoms are definitely still there. I went to my gynecologist again today because I think I have LS. I do not have any white patches but my skin is soooo fragile. She swabbed me for all the STDs, bacterias (even mycoplasma and ureaplasma, and yeast) today. She did not want to biopsy me, instead she prescribed me clobetasol ointment and told me to try it for 3 months and told me if my symptoms do not improve in 3 months, to go back to her and she would do a biopsy then. I agreed. As soon as I got home from my appointment, I went to the bathroom and noticed a giant fissure on my labia majora. I think I got this fissure from her exam - my skin is so fragile that anything external will make it tear. Do you guys agree with her plan or should I go to a different doctor for a biopsy? Please help.

Does anyone else have white patches on arms?

I was recently diagnosed and got my clob from my mail-order pharmacy today. I’ve been seeing some cream vs ointment conversations here so I was surprised to find out I was prescribed the lotion formulation. Has anyone used this? Should I request a new prescription for the ointment? I honestly don’t really trust the gyno that did the biopsy/follow-up. I normally see a NP at the practice, but a doctor had to do the procedure. Thanks for any input!

We are instructed to use clob and moisturize on the outside of the labia minora. I have painful thin skin that tears easily inside my labia minora as well. I have a line down the middle that is red and irritated like a crack that was pulled too hard. I also have some lesions inside. Is this common? How is the skin on the inside supposed to improve if you are not directly treating it?

Does anyone have any advice about foods that helped LV and foods to avoid?

Today was one of my scheduled days to go into the office. I (F) had a plan to ask my manager (M) to try and get approval for a bidet in the handicap stall in the women's bathroom.

Since my diagnosis I have generally just avoided using the restroom at work. Well, last week I had to go and it was an emergency and the toilet paper ended up giving me the equivalent of carpet burn in my ass crack.

So I hyped myself up and rehearsed how to approach the situation. Only to find that my manager decided to work from home today. My anxiety was already high so I decided to try and bring it up over a chat message (because I am surrounded by people and could not discreetly ask over a call).

Well, I start typing it out and definitely backspaced quite a few times. Enough for him to notice. And he asks, "OMG are you okay?" Realizing I have just panicked this man, I copy the message I was typing, write back, "I'm good, don't worry" then paste it back in. He agrees to put in the request and handles it with tact.

An hour later I am giving a demonstration for an application I spent the last few months creating and realized I forgot to bring up a web page I needed to show the users. I check my notes, copy the link, and paste. However, my computer lagged at that moment. You can probably guess what happens next. Apparently it did not copy.

So for all to see, I opened a webpage with the search result being along the lines of, "I would like to request a special accommodation for a bidet because the toilet paper injured me last week." It took me a moment to realize what I was looking at. Panicked and defeated, I closed the page and saw the look of confusion and concern on the faces of those with their cameras were on. No one said a word about it. But I can guarantee they will they will think of that every time I have to work with them now.

My mom has excruciating urethra pain and bladder pain when she needs to go to the bathroom. Her urethral pain is non stop, burning stabbing pain. She feels like she has to go all the time even after urinating. Any bowel movement is also extremely painful. To me this sounds like IC, but Dr says LS can affect urethra as well.

Is this common for LS, I talked to her doctor and she said yes and that she can go under the operating room to put in an estrogen ring. She believes she is also estrogen deficient and that’s what’s causing her pain. My mom also cannot walk at all due to a stabbing pain in her clitoris. She had an implant in her back to control her over active bladder bc of incontinence and open up her clitoral hood bc of fusion and took out some keratin pearls. She also has intense itching all around her vulva, and surrounding areas. My mom refuses to put on clobetasol and estrogen and testosterone cream. She says the reason she has pain in her urethra is from holding in her urine years during work. She screams day in and day out of pain, completely lost weight to around 90 pounds. She stands for over 20 hours a day in the bathroom. I don’t know how to help her anymore. She can’t even open her legs because of how tight her pelvic floor is. I can’t even put on any ointments for her. She is currently taking uribel with no sign of relief. This has been going on for 5 years. Please help me help her. I also have pelvic pain and I know how hard it is. It breaks my heart. I am at a stand still. When I take her to the Dr. she won’t even allow Dr to get a look bc even opening her legs or touching skin makes her scream. Everything needs to be done under sedation. Please I ask for your help. Thank you 🙏🏼

I have suspected LS since may when I flared with the worst burn and itch of my life. I am 35. I am post partum - this all started when my period came back at 7 months pp. The normal usual misdiagnosed yeast infection and wrong ointments, till I suggested it to a doc at a sex clinic and she started me on clob. Things have been pretty well maintained, but I always flair a bit around ovulation and the week before my period.

I was referred to gyn and finally went to see them today. They listened, and without even looking said it sounds like LS, and during the exam she said I have some architecture changes. But I have no white patches. The skin of the vulva is very red though. She asked if I use pads, which I do not- I’m guessing she thought I was reacting to something. They took a biopsy and are having me back for results in 6-8 weeks.

Had anyone else experienced this? No white patches, but quite red? She said the architectural changes look like LS, but the redness isn’t classic.

Btw- I had read about some pretty unpleasant biopsies on this sub. I didn’t know I was getting one today and was glad I didn’t because I would have been nervous. Just wanted to share my experience that it wasn’t bad at all. Obviously the freezing needles weren’t comfortable - but not terrible. And I didn’t feel the biopsy at all. I went straight to work after and was nervous it was going to be bad once the freezing wore off- but so far, so good!! If you’re worried about biopsy, don’t be. Especially if you’ve had kids… lol. Walk in the park comparatively !! :)

Hi everyone! Yesterday, my doctor gave me (26F) a working diagnosis of LS. I’ve been doing a lot of reading on this subreddit and it’s been so helpful. I’ve NEVER felt so validated in my life since having these problems. Overall, I feel okay about the likelihood of this being what I have, but have some questions. I am prescribed to use clob twice daily for a month and I think I understand the application part. So obviously I apply once in the morning and with in the evening. But I do like to bathe with epsom salt and obviously use body wash in the evening. Do I need to eliminate the salt? I use Dove antibacterial body wash and then the regular Dove body wash on top of that more to smell a little better. Do I need to change soaps? I try to avoid the vulva/vagina when washing as it’s self cleaning, but the soap being in the water concerns me. Any thoughts on this would be super helpful. I’m working on getting 100% cotton underwear and decreasing my shaving!

Have hit a month using clob and still don't feel much of anything. If it was caught "early" my specialist says, shouldn't I feel some type of relief by now? I've been suffering for over a year with no definite answers. NONE. I got diagnosed with chronic yeast. That went nowhere. Currently pending results for a candida culture that will grow at the lab for any type of candida. My biopsy results came back with chronic inflammation only. I wish I could post pics of my vulva to show. I don't know what else this could be. I see my regular gyno, a specialist 4 hours away, and an out of state specialist I've seen once in April. I feel like giving up :/ symptoms started after oral sex with a partner To ADD It also feels...weird on the inside. I can't explain it. Sometimes when I have sex i feel so dry. Plus I have discharge. White discharge with white little clumps in it, usually only seen with a pelvic exam. There's hardly ever discharge on my underwear. It's on my partners penis when we have sex too. Is discharge normal with LS? I feel like My vagina is swollen. It looks like it.

I first saw signs of LS end of 2020-beginning of 2021 and was not diagnosed up until march 2024. Was initially going to urologists who dismissed it as vitiligo and eventually after some googling found out that I have to actually go to a dermatologist for this and he immediately suspected LS and did a biopsy to confirm it. So far my LS is mainly on the frenulum and a bit on the glans (on both sides of the frenulum where the frenulum connects to the glans). I don't think I have phimosis yet because I can easily retract the foreskin. Initially was prescribed clob and used it for a month and it did help (masturbating/sex did not hurt as much after the treatment). So far I never had tears or anything like that. Fast forward to August 2024 I started applying clob again because I saw it becoming more white and around the end of September after having sex (which involved more rubbing) I started having pain even at rest. Sometimes its like burning pain or just irritated skin. From what I have read this should be a flare to my understanding but this time clob does not help. My dermatologist suggested to use Benival but it just made it feel worse so I tried clob ointment for a while but it also did not resolve the constant pain. I noticed that using lots of Vaseline during the day makes it a bit better but not what it used to be before the "incident" if you can call it that. I went to 2 other dermatologists to get more opinions and one suggested to try steroid shots and the other did a swab test and talked about tacrolimus. The swab test showed I have small amounts of E.coli but my urine tests did not show E.coli at all so I just finished my course of antibiotics yesterday and now my options are to try the steroids shots or go for Tacrolimus. I did read that Tacrolimus takes longer to have effect and that steroid shots provide more immediate relief. I had to order the steroids myself from abroad because they don't sell it in the pharmacies in my country and managed to find Kenakort (the dermatologist told me it's one of the injectable steroids I can try). I have a booked appointment for tomorrow and will probably ask her to do the shot/shots (not sure if it will be a single one). So my train of thought was to do the shots first , since my condition seems to be more acute and use tacrolimus as maintenance therapy. Can anyone (preferably males) tell me what has your experience been with injectable steroids?

After I was diagnosised as "possible LS/BXO" 2 weeks ago, I usually feel super scary in the daytime, but peaceful in the night, then feel super scary during sleeping(especially in early morning), my whole sleeping is cracked, wake up every 1-2 hours in the night, is it Anxiety disorder?
How long do you totally feel peaceful and treat the disease as a part of daily life?

Following up: it sucked pretty bad. For new people who might read this, comfy pants, something to squeeze, if they offer you relaxing meds TAKE THEM. This shot is the 1000% worst part, and there is no shame in crying because girl, so did i. Day 2 recover isnt so bad, get a peri bottle.

My gyno highly suspects LS, especially since I have already lost my labia minora. I've already had a biopsy done on my uterus a few months the ago(had to rule out endo, cancer, etc) and I opted to be put out for it. I've had iud's- i knew it wasn't going to be fun. Today I have a biopsy scheduled for the vulva and there is no option to be put out, which i get.. but I'm really, really nervous. Like i had thoughts about canceling the appointment, but I know I shouldn't. Any advice? Soothing words of affirmation? This whole things sucks, I wasn't expecting to have to deal with this at 29.

I recently saw a urologist having complained of irritation, slight discolorisation. They didn't formally diagnose me with anything in particular, just said likely inflammation irritation from urine, and steroid cream management or circumcision is an option. See again in 6 months for a checkup.

I have seen success stories with people trying auto-circumsion. Can anyone recommend me any particular 'bands' or simple devices, preferably I can find of Amazon (for convenience) that can safely and effectively retract the foreskin back. I want to try this first. I don't have phimosis but I can see my foreskin is a little more red than the rest of my penis skin.

I will also add, this isn't a replacement for 'official' medical advice, as I am being looked after by my GP and urologist.

Many thanks.

Do you need to rinse it off or just leave it there all glistering? Also how much do you usually apply?

I’ve been on clob 2x a day for one month. My derm(who specializes in Male LS) said to stop entirely after the month and not to taper off. I’ve read online about rebound symptoms from the steroid dependency but I also don’t want to go against the doc who surely knows more than I do. Does anyone have experience stopping cold turkey after 1 month?

Has anyone ever had doctors tell them that your LS isn’t autoimmune? I had all my hormone panels done and had no signs of autoimmune condition, however I was diagnosed with LS over a year ago. The rheumatologist said it’s just a mysterious disease but for me, it isn’t tied to autoimmune dysfunction.

Anyone else have a similar experience? What did you make of this? I’m getting another opinion with a double certified dermatologist rheumatologist soon but curious what you all think?

I can’t get this area better. It is always red. I tried upping the Clob and it made me burn. I was using too much, thinking that would help since the usual dosage wasn’t. Doctor told me to take four weeks off. It’s been almost four weeks and that area is still red. I’m going insane. I’ll start Clob up again when the four weeks is up, but I know it’s not going to get better bc it wasn’t getting better when I was using it before, which was for 4 months. The white patch on my perineum is better. Posterior forchette- is not. I’ve already been to the doctor three times for this, and asked if there was alternative treatment and he said no.

hi :)

i have a question that I’ve never gotten a good answer for: when i flare and use clob daily for a few days (i get flares before my period sometimes), can i just go back to maintenance or should i taper off? Like if i do 3-4 days of clob, do I then need to do every other day and two times a week and then once a week or can i just go back to once a week after that flare?

So I've been using the clob ointlemt as prescribed, I has 2 weeks of applying every day and I'm now at phase 2, which is 2 weeks of every other day... and so far the discoloration seems to be a little bit better, but I realised today there's another area I hadn't checked and had no idea was also affected... so yeah.. i haven't applied any ointment on that patch. Do I finish this round and start again on that specific patch?

Basically I think I'll have to live like this. I haven't been able to get diagnosed and I haven't been able to be calm without pain and they ignored my spots and my pain.

Hi everyone, this sub has provided me with a lot of peace of mind and support that I’ve needed in navigating my own health journey. I just had a biopsy done almost 2 weeks ago of the vulvar vestibule and I wanted to share my experience in case anyone is panicking like I was. I did get a hole punch biopsy, I believe 2mm, and left with 2 dissolvable stitches.

In my experience, it was really not as bad as I predicted. The worst part of the procedure itself was the cleansing wipe that the doctor used beforehand on the area, which stung my skin. I did not think the needle was super painful and after that I felt nothing. In my opinion, my IUD insertion procedure both times that I’ve had it done, was far more uncomfortable.

I am really lucky to have a great derm (in the Boston area, if anyone needs a rec feel free to message me!) The hardest part of the experience for me was the exercise of mental strength when it comes to recovery and taking it easy, while also kind of agonizing waiting for results. But, it’s now been almost 2 weeks and I am nearly back to normal. It turns out I actually do not have LS (although it was suspected that I did) so, for me the search continues. But I thought it might be helpful to share this positive experience anyways in case it helps even one person :)

Has anyone had a biopsy in an area where there are no active lesions? And was the biopsy still accurate? I have 1 active fissure currently and my biopsy appointment isn’t until 4 more days and I am not sure if it will still be active at that time. I don’t have any white patches. My symptoms are intense itching, fissures, this internal and external raw sensation/feeling and pain during sex. Advice and experiences appreciated!

I am a 26 yo f diagnosed the beginning of this year. I was prescribed clobetasol which has significantly reduced my flare ups and itching. However, I realized that sex was becoming kind of uncomfy for me and I would get little tears that would burn for a few days & during sex. This was awful for me as my husband and I have always had an amazing sex life. I just want to share with anyone that may be in the same boat.. try Vaseline as a barrier before sex. It has changed the game & now I don’t feel I tear & am enjoying sex again. I’m so happy I found this group and y’all’s recommendations. Thank you!

Does anyone have a cropped image of the area affected by LS? Or can I get permission to post a cropped image of the area I suspect to be affected by LS.

My skin almost always tear when having penetrative sex. It's usually very small tears that's hard to see, so it's not super serious, other than the fact that I do tear. I'm just wondering if this happens to other people and if you also still have sex, or if it's bad to keep doing it?

So far tearing has been an issue for almost two years, so it's not like I can just wait a few months until tearing is not a problem anymore. It would just plain out kill my sex life if I had to stop.

Has anyone had lichen due to hormonal imbalance?

Hi guys. I’ve been researching ls symptoms and some people have said they had a white coating on their vulva that peeled off. With those that had this when the white coating peeled off was it sore or was it just normal skin? I had two white patches on each side of my labia majora which peeled off. I went to gyno and she had no clus what it was and to just keep it hydrated. Its gone now but no clue what it was

Hi Everyone - New here. Had a question about applying Clobetasol. My derm's directions were to apply to all the red and white patches on my penis, but he didn't specify whether I need to pull the foreskin back over once you apply it. I'm on .05 Clobetasol ointment. Curious to understand how others are applying it, and if there's any difference between having your foreskin back or covering your penis. Thanks!