Newly diagnosed - no white patches and other Qs

Women's health
1

Hi everyone

I was recently diagnosed with LS (*sarcastic cheer*) although actually at the time I was overjoyed to have a name for it. I have pretty bad health anxiety so obviously I was convinced I had some terrible terminal disease, so being diagnosed with this felt manageable in comparison. 

I basically had the usual things I've seen on here. I'm in my early 20s and had months and months of itching, treatments for thrush, some for BV, recurrent urine infections, more thrush treatments. Then I went for a smear test and I was in so much pain I couldn't bear it. I finally insisted to my GP that I DIDN'T have thrush and I needed to see someone. She admitted GPs don't know a lot about things beyond thrush, so I got a referall to a hospital (I'm in London, UK) and the consultant was amazingly thorough, took a detailed history, did an exam, and said her clinical diganosis (with no biopsy) was lichen sclerosus. She said when I told her I had had childhood asthma (with some adult flare ups) and ecezma that everything suddenly made sense. 

But...I don't have white patches at all. Does anyne else not have any white patches? I can't find any sort of medical website or paper that mentions not having it. I have itchiness (well more like a sharp scratching sensation, sometimes will feel like I have a thorn trapped down there!) that usually comes when I am walking about especially in tight jeans (if I am having a flare up). Also after I've peed it feels a little sore and during contact with any kind of water (though having a nice Dermol bath does feel amazing but only afterwards, once I am out of the water). I think a recent bad cold and serious stress has impacted it and I am doing my best to work my way back up to how I felt after seeing gyno, which was going weeks without any symptoms. Now it's more like days, or hours. 

I am going back to consultant in 6 weeks and have so many questions for her. But after all my rambling I also have a few questions for you guys: 

1) Has anyone else not presented with white patches and yet been diagnosed with LS? 

2) Does water affect anyone else? When I lie in the bath I feel...weird, like it's going right up inside me with no barrier and it feels very raw. I almost have to cross my legs to get rid of sensation. I try not to get any water on it at all when I am in the shower as that just sets it off - and this is whilst using Dermol, not a fancy soap or anything. But I do love a good bath and it ruins the enjoyment slightly. 

3) Smear test and sex - these are my two biggest fears with this or any similar diagnoses. I haven't had sex yet but I am anxious about it already. And I am anxious about trying for a smear test again (though my gyno calmed my fears and I am not going to have one until after I've had sex). 

4) Flare ups - how long do yours last? I feel like this one started about 6 weeks ago and it doesn't seem to be calming down! Which makes me anxious. Which probably makes it worse. Ahhh.

Thanks everyone. This forum has in turn helped and scared the bejeezus out of me, so I thought I'd finally contribute. 

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Hi Sophie

I am 51 and fairly new dealing with this. It took 2 biopsies to diagnose mine. I do not or have never had white patches either. I just have red, raw skin and tears when really flared up. I dont have any issues with water. Like many others I deal with , sweat, and urine irritating and tight clothes. But it does get better if you diligently treat with steroid cream or ointment and all the other things everyone suggests on this sight. I also never really had itching even, more just pain and burning. 

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Thank you for responding! It's good to know I am not the only one without white patches. My symptoms sound very familiar with the red raw look and burning rather than itching. Every doctor who inspected me said everything looked ok 'but a little sore'. Maybe it's the sort of thing that is different in different people.

I've had no visible tears but then again it's only been about a year since I started having symptoms to diagnosis, so maybe I caught it soon enough.

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I am 34 years old and I am coming up on one year with a diagnosis.  I feel like I have suffered longer than that but finally more symptoms were present and with my own online research and demanding the gyno seeing me we were able to properly diagnos.  I was then sent for a biopsy which confirmed it. 

At present I don't really have white patches.  I do get itchy sometimes and after a long day on my feet or after an intense workout I feel very "heavy" in my vaginal area.  It is the only way I can describe it. 

At present I am still secsually active and have not had anymore tears.  I tore twice in the past and one time required stitches.  Again, they didn't know why this happened to me as I was only 25 and on my honeymoon.  This is a story in itself.  smile 

I use the steroid twice a week now and it seems to keep everything under control.  I also coconut oil throughout the day and aquaphor baby ointment.  I also soak in a tub twice a week with baking soda and a few times a day use a perinal bottle with some baking soda and water to clean the area after using the bathroom.  I have also cut out sugar and try my hardest to stay clear of gluten (which I am not great at).  I have also quit washing in anything that contained scents.  I also use an all natural soap to to wash my body that is made with frankincense oil.   

I have had one flare up since diagnosis and it took about a week to get under control.  The steroid really helped then. 

I don't know if any of this has helped.  Sometimes I feel like I rambled on and on here when I actually respond.  You will find so many helpful things on here.  I was devastated when I found out.  Literally cried like a baby at the doctor's office.  I have since accepted it and everyday try to keep things under control.  It becomes more manageable with time and having this site. 

Hang in there and you will get through this. 

 

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To see my white patches, i have to use a magnifying, illuminated make up mirror.  The type you can buy on a stand for about £30.    I cant see anything in an ordinary mirror.

anxiety and stress all seem to make it worse.

is it worth you using a waterproof barrier before you get in the bath or shower?   Something like vaseline?

xx

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Hi Sophie, I also have not had any white patches, but with everything I was doing to clear things up I killed the flora down there! I did have childhood asthma, with adult flair ups. I experienced burning, itching, biting sensation, tightness and irrigation after voiding. I was also treated for everything BUT LS! I went to a good gyno who took one look at me said LS! She put me on Clobetasol twice daily, telling me to get off it as soon as my symptoms abated, which they never did! On this site I have learned about Borax and baking soda, it has been a true Godsend! Please read all the forums here, I am so new to this (6 weeks) so I really don't feel comfortable giving advice except read every thread! There are so many very helpful woman with good information that was worked for them and now appears to be working for me. There is life and hope with LS wink

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I forgot to say that I use Vitamin E after every void, bath and at bedtime!

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yeah mine has been about that long too. It comes on so slow. I started feeling uncomfortable during sex, but part of my problem was a complete hysterectomy and going off HRT after 7 years. Because i didnt get after it soon enough, it got real bad, several lesions. By the time I saw a gyno, he thought it was herpes, but I knew that was wrong. He finally relented to thinking it was hormonal. I changed to a woman gyno and did a 2nd biopsy which was positive for LS. Like you, I was relieved to have an answer a least. I thought cancer and all that also. But though our LS I guess puts us at more risk, it is rare. This sight has shown me there is hope to live a sort of normal life with this.

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Hi Sophie,

I am 55 and have dealt with this for about the last ten years. It was only about 4 years ago I finally received a diagnosis and name for the symptoms I had. And then, only because I had done the research, and contacted a 'female' gyno. (Don't trust males anymore, one told me I had herpes.)

I did not have the classic white patches, more like all my skin was just a pale color. As though it lacked blood supply. I did have the typical itching, it was crazy itching. And I also had tears, when I would be intimate with my husband. It seemed like it took very little to produce a tear in the flesh. Sometimes even toilet paper would cause it.

I tried homonal cream, and chlobetasol for a while, with no success. Still had all the symptoms and it was becoming painful to have sex.

My gyno told me about the Mona Lisa Touch treatment and said she thought I was a good candidate for it, as I had not lost too much of my architecture down there. (That is something you don't hear much about, but this horrible diagnosis changes the structures of your 'parts'wink She said she had had great success in the women she had treated. But it was very expensive. That was last year.

This year, I opted to put more money into my flexible spending account at work to pay for the procedure this year. It is a laser treatment to the interior and exterior tissues down there. They do three treatments four weeks apart.

The first treatment wasn't too bad, but as they went on the tissue was rejuventated enough the feeling was more pronounced and the last treatment was quite painful.

I am now about 3 months post treatment and have to say it has helped immensley. No more itchiness, the skin seems more normally colored and the natural lubrication seems to have returned. I still have some discomfort when my husband and I are intimate, but lubrication seems to prevent the worst of this even.

All in all, if I had to do it again, I would. They say you should have a treatment each year to prevent relapse, so that is down the road for me.

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Thanks for your response! That treatment option is interesting. I didn't know about that. I definitely don't lack colour down there, it is really quite red. But I think that maybe these things do show differently in different people, and maybe to do with the stage of it?

I have to say I was so glad when I saw my gyno was a woman. It took so much just to get a female GP to take a look down there for the first time and I am now Ok ith it, but I'm not looking to stretch my bravery any further by having a male gyno. 

No uterus, no opinion - and all that. 

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Thank you so much for taking time to reply! It's so comforting to know other people have experience with this and have advice to give. This thing majorly exacerbates my health anxiety which then I think agravates my symptoms which is a bad cycle - but I hope using this forum efficiently will help break it. 

 

I am not sure how to even define my flare ups. Sometimes I get a twinge of pain or scratch that lasts two minutes, and that's it. Is that a flare up? I'm not sure! And I never know when to ease off the steroid cream. I am now doing hte second week of what my gyno told me to do, once every two days, but anxious it'll just go back. Glad to hear  that sex is still possible with this thing. I am worried that having not had it before that when I do, this will be something to worry about, but I will cross that bridge when I come to it….

 

Sugar! Yes sugar has been really interesting part of that. I think that was how I got my very first bout of thrush. I am not a sweet toothed person at all but one Christmas I worked in an office where we got so much free stuff from clients. I didn't go a day without scoffing at least a handful of chocolates and some cake. I think it ruined my body! ANd since then I have noticed a correlation between bad eating and symptoms. I cut down majorly on gluten for IBS reasons recently - not completely but only brown pasta when I do eat it, no bread etc. I really think that helped. 

 

Coconut oil is interesting. I am afraid to try anything new in case it flares but I d like the idea of something more natural to help with just the occasional itch.

 

I think I know what you mean about the heavy feeling. I sort of feel like I could push something out of there if I pushed hard enough? (FYI, I don’t actually!) I guess it's the swollen feeling. 

 

No thank you so much for replying it is helpful just to talk this through. When I talk to people about it (even online) I feel so much more positive and pragmatic than sat on my own worrying about things. I’ve told one friend and she was sympathetic but it’s still a bit weird chatting to your privates with your best friend!

 

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Yes I am thinking of trying vaselien for showers. For my baths I think I want the emollient to get there, so I'm not sure a barrier would be best idea. But it is a good idea for when I am just popping in the shower and also when washing hair to protect it from shampoo/conditioner etc. 

I'm not sure I want to see them! Plus my gyno couldn't mention seeing any to me, os maybe there really aren't?  Who knows I will ask her in my next appt. 

Yes unfortunately I think they do make it worse. Just sucha coincidence I had a really bad bout when I went through some really stressful personal stuff and work issues. I am hoping new exercise regime will help me find a bit of balance for my anxiety. 

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Oh and thank you for replying it's such a relief to talk to people about this and hear words of wisdom!x

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Thank you for this! That is my new mission, to read as much on here as I can and to make a list of tips and tricks to try out. I am on Dermovate (it's what they give out in UK I believe) and it seems to do the trick but then I am struggling weaning myself off it without the sensations coming back. 

Your symtoms sound very similar to mine! And my doctor looked at everything in different light when I said I'd had terrible childhood asthma and ecezma, it made her really go for the LS diagnoses over other things. 

Baking soda is interesting! I have read that a few times already. 

Thanks again. Here we go I guess! 

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Another interesting tip thanks! 

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I'm wondering about a biopsy. She said if I come back adn things haven't improved at all (they have, just struggling with this particular flare up but it's nowhere near as bad as it was before) then maybe we can do a biopsy to work things out. Maybe for mypeace of mind I should push for it. 

17

Welcome.  I did not have the white patches either and was diagnosed at 31/32 yrs old.  I am now 53 and enjoyed many years of remission until recently.  I guess my body is going through some major hormonal changes which appear to set off my flare.  When I have my menses symptoms disappear.  This last flare has lasted several weeks starting 2 weeks around ovulation time (typical for me) then resumed after my period was over.  I figured maybe I contracted an infection so I put myself on teas made of uva ursi and buchu which has helped alot.  This and application daily of clobetasol and vanicream asa moisturiser has kept me comfortable alll day.  I have increase my topical application of estriol oil on my labia and also use progesterone cream on my thigh so I do not get a dominance effect.  Its a battle but I have to say that water has never bothered me unless i have an open sore.  Maybe there is something in your water????  TRy buying a bottle of distilled water and pouring it on to see if you get a similar effect and go from there.

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Dianne.us

Interesting that you say you experience flares around your menses. I had that too. It seemed my symptoms got much worse around my period, and then would settle after. Once I hit menopause, the symptoms went nuts. And even though I didn't have a monthly, I could still perceive a slight increase at certain times of the month. I told my gyno this, and she said, "hmmm...that's interesting. But you know we are learning so much about this, just in the last few years, it doesn't surprise me that there would be a hormonal connection."

I am very appreciative of this site, as it provides a place to discuss and compare notes on this syndrome.

For me, before diagnosis, it seemed that there was nothing at all written about this. Even the doctors were unfamiliar with it. I had to do extensive research to discover it, and then printed the information out and took it to my, then new, gyno. I told her ... "I think this is what I have, can you help me prove I don't or I do?"

She was totally on board. I have been very fortunate.

 

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Sophie, it was been 11 days without any itching, burningor feeling like bugs were biting me, and NO Clobetasol! I am taking Borax baths and using the saturated solution you can read about on "an experiment with Borax" on a forum here. I am so excited about this and wanted to share with you. Also I still use the Vit E as it keeps everythingsoft and supple down there. Keep reading everything you can, there is great help and hope here!

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Yes, a male Gyno told me I had Hepres also. I didnt know about LS and it only took reading on my own to think thats what I might have and yet I wasnt sure because i didnt have the white patches either. It took a woman gyno to diagnose me also, and I only went to her to do the Mona Lisa Touch thinking that might help. I need to go back and see if they can do the outer area now.