1. Community
  2. Women's health
  3. Lichen Sclerosus

Newly diagnosed - no white patches and other Qs

Posted , 7 users are following.

sophie48844
sophie48844

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. 

0 likes, 20 replies

20 Replies

Prev
  • dianne.us
    dianne.us sophie48844

    Posted

    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.
    • tabby72761
      tabby72761 dianne.us

      Posted

      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.

       

  • sophie48844
    sophie48844

    Posted

    Hi guys! I just wanted to say I am over the moon this week - for the first time in SO long (I'd say a full 12 months) I feel....normal down there. Like totally, completely normally. When i walk I don't feel uncomfortable, when I wear tight jeans I'm not dreading the inevitable pain, I'm not feeling a raw burning sensation at random times, dreading the shower because the water made everythign hurt. 

    And, I took a look down there, and it's the first time it's not looked raw and red in even longer than 12 months. I just assumed I'd always look like that there, but now I just look a wonderfully regular colour. 

    I really didn't think this last lapse would go away! And it's not just gone away, it's better than before!

    Inevitably, I am sure, it'll return in some form. But for now I am enjoying feeling upbeat as I am sure it all translates to my hoo-ha! 

    If anyone is interested or if it helps at all, here is what I've been doing slightly different over last couple of weeks since I posted that I think has finally paid off: 

    - used coconut oil every night. Just before I go to sleep, so that it doesn't go everywhere and stain the crotch of whatever I am wearing

    - using vaseline in the shower (thank you to whoever on here suggested this!). This is especially good for me as I think it must have some sensitivity to the type of water here in ol' London. So when I Am showering I use it as a barrier protection, so that I don't get conditioner/shampoo anywhere near it. Also in the gym showers where I use the gym shower gel. 

    - Dermol in the bath. I thought E45 would be a good replacement for Dermol bath emollient but it wasn't great for me. I couldn't get any more bath emollient (for some reason my doctor KEPT getting the prescription wrong, still trying to sort it) and so I am just using the lotion in the bath and swishing it around. Sort of same thing! Keeping the baths regular, in fact every day if I can manage it. 

    - Dermol lotion every morning as I get dressed. Applied with a cotton swab. This was a recommendation from my gyno and I've finally worked out how to apply properly (it sounds silly but I finally found where the specific problem was, instead of just applying wherever I could reach) and when/how it works for me. 

    - lowering sugar. I knew this gave me thrush in the past so I am always careful with my sugar. But when I am unhappy, I want to eat my feelings, and I think I was doing that when this stuff made me sad. I've wrangled my cravings under control and I think that's helped. 

    Anyway, I am sure this will no doubt dip. Perhaps even in a few days time, you never know! But thanks for this initial discussion I had on this forum which I found so helpful adn comforting. 

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.