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

might have ls, need advice

Posted , 8 users are following.

gwynethleeks
gwynethleeks

Hi everyone,

Im 31 and have 2 children.  After my second was born, 2.5 years ago I noticed my labia had turned white.  It was a shock , but I assumed it was an iron deiciency thing.  Also since then I have been itching and burning a lot.  I always assumed it was thrush and have gotten through a lot of canesten, but it never seems to go.  Sometimes, and now actually,  I get big sores.

I googled symtoms a few nights ago and was shocked by the results.  I saw my doctor on friday about a separate issue and mentioned it to her.  She was horrified that @id left it for so long and thought it was a sign of anaemia.  I have an appointment with her next week to look at it, but am hoping anyone may be able to tell me if the symptoms sound like theirs.  If it is LS how do they diagnose it? thanks

0 likes, 36 replies

36 Replies

Next
  • Morrell1951
    Morrell1951 gwynethleeks

    Posted

    Gwyneth, you need to see a gynaecologist or a dermatologist ASAP. Many GPs don't know enough about LS to diagnose it. You want to make sure those sores aren't bad cells and you want to get started on the tiny bits of ultra-potent topical steroid ointment we're all on. Please watch Dr. Goldstein's presentation. He's a gynaecologist who happens to specialize in vulval disease and he has a lot of helpful advice about how to make the standard treatment as effective as possible.

    When you say 'sores' do you mean red raw areas or more like boils?

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    • gwynethleeks
      gwynethleeks Morrell1951

      Posted

      Hi, thank you for replying.  The sores look like red raw areas - possibly from scratching? or knickers rubbing? (hopefully)  Theres no way its an STD or anything.  
    • Guppy007
      Guppy007 Morrell1951

      Posted

      I havent had the red and raw.....only that white patchy lacework look, so your right of course, it could be either, I think thats why they like to do biopsys.. I wonder if the treatment differs at all, I would think it would be the same...

       

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Most gynaecologists and dermatologists can diagnose LS just by seeing it, but some do a biopsy, for instance if you've been using over-the-counter hydrocortisone the surface might look pretty good – the symptoms are masked.
  • Guppy007
    Guppy007 gwynethleeks

    Posted

    Hi, I went to my Gynocologist for my diagnosis.  As mentioned, doctors arent really that well informed with this particular disease, so you need to go to the right place to save time, and money actually!.  For diagnoiss of LS they will normally want to do a small biopsy, although I dont always think that is always absolutely necessary, every case is different. I would not want to wait another week, I think you need treatment asap for those sores.
    • gwynethleeks
      gwynethleeks Guppy007

      Posted

      Hi thanks for replying, my appointment is on tuesady. do u think i shoulkd get an urgent one monday instead then? 
    • Guppy007
      Guppy007 gwynethleeks

      Posted

      Hi, No I dont think one day is going to make a difference..just so you know there is also another condition from the same family called Vaginal Lichen Planus, which usually differenciates itself with red sores that are found within either side of the labia..they are very similar, but either way no doubt she will treat you with the same steroid cream anyways.
  • suedm
    suedm gwynethleeks

    Posted

    Hi  Gyneth where are you In the UK ? If so i would speak to the GP  tomorrow or the practice nurse - ask for a specialist appointment - if one is MONTHS away as is often the case these days - phone your local hospital  and ask the day  and time of the clinic for  vulval / gynae/ dermatalogy  clinics- whihc one you think would meet your need - check it out on line re your local specialists. Speak to the consultants secretary and ask for an urgent appointment, If you can afford the £100+/- consultation fee you may get seen even faster. Do you have other symptoms? itching/ soreness/bleeding?

    DO NOT SCRATCH

    cool your vulva with cool / cold water pads, it will help a bit

    dont let urine- or other body fluids -  get on to your skin and use  a barrier ointment  this weekend- vaseline  emulsifying ointment for the chemist - go to the Chemist and talk to the QUALIFIED  pharmacist and ask what you can put on to relieve the symptoms while waiting for the appointment 

    Check the  various threads on this site and- no soaps tight clothes lots of water to drink and reduce your stress and sugar levels!

    We are concerned for you not because  you are in any danger but because the sooner you can get treated the better your  recovery. IF you DO have LS then the faster you will get some relief when you get the potent steroids- If you dont have LS and it is something else then worry is removed 

    Take care and try not to get stressed out

    Well done for looking at your undercarriage - that was very sensible

    Sue 

    • gwynethleeks
      gwynethleeks suedm

      Posted

      Hi Sue, thanks for replying.  Yes i am in England.  I will see what my GP says and then follow your advice to try to get specialist appointment.  It is very itchy/sore and hard not to scratch.
    • suedm
      suedm gwynethleeks

      Posted

      IF you MUST scratch  then scratch your arm or your leg thinking you ARE giving The Itch a lot of relief, If you REALLY  believe it will work - then it will - and it can help

      Do you have any fusing- sometimes the labia looks as if it is stuck  to the opposing skin surface, or sometimes the labia is hot and swollen- not necessarily caused by scratching but the condition.

      Go commando if your pants are rubbing Dont wear skinny jeans jeggings tights or ANY tight trousers - long skirts are so much easier - but i find  wearing a petticoat a must cos sometimes the unlined skirt can get caught up in an unbecomming fashion and it is SO inelegant trying to loosen the skirt with dignity!

      Good luck- fingers crossed you have some thing else  that isnt a life long condiditon, but can be sorted fairly swiftly

      sue

  • sha1271
    sha1271 gwynethleeks

    Posted

    Hi,

    My story is a lot like yours. I was 31 and just had my second child. I started with lots  itching around anus and thought   bad hemroids. Then the vulva itching  thought it was yeast. After eight months I had an irritated spot that was painful. Finally had a look and th whole vulva was white and I had a blister on the clitoris. I freaked of course and searched medical books. Thats when I found LS and just knew I had it. Took several drs to finally get a diagnosis from  derm. Althougg I never got a biopsy til 11 years later to confirm it.

    I strongly urge you to ask for a biopsy. Im learning there are many disorders of the vulva. It does sound like LS but could be something else.

    If you are prescribed clobetasol or dermovate, ask for the ointment it works better and faster.

    For now you can try vasaline,  unrefined coconut oil to ease Itching and soreness.

    I wish you luck.

    Shari

    • gwynethleeks
      gwynethleeks sha1271

      Posted

      Hi Sha, thanks for sharing.  What has it been like for you having it at this age?  
    • sha1271
      sha1271 gwynethleeks

      Posted

      For the most part it hasn't been too bad. Ive used the clobetasol off and on over the course of 11 years. It has helped a lot to keep it from progressing to much. I don't have to much fusing. My inner labia is gone but everything else has been good up until the age of 40. I started getting more ffrequent episodes of bruising and small tears. Ive learned recently with a new gyn that it's very important to use the clobetasol twice daily for two weeks at a time during these episodes and even when I just have white patches. Very important to keep up on treatment. I don't have sex until tears are healed and use good lubrication to keep friction minimal. I recently found out that my case it's pretty bad for my age. But I know it would have been much worse if I had not been treating it. I did go through long episodes of no symptoms but it does recur . I hope you get it under control soon, you can have a normal life if you keep up on it.
Back to top
Next

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.