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Not sure what is going on... Possible LS

Posted , 10 users are following.

renee72446
renee72446

I gave birth to my last baby may of 2016. I am breast feeding and got my period back at 18 months postpartum and have had 2 so far (21 post partum now). Six months after he was born I started getting very itchy above my clitoris to the right of it and occasionally on my perenium. I do not have any white patches and have seen my doctor (he has only looked) and says he thinks the itching is due to me breastfeeding. My question is can LS stay is small spots and not spread? Do white patches always show up after a certain amount of time? I do not have any disappearing of parts. I sometimes get little fissures in my perenium. I'm just terriefied that its undiagnosed LS.

0 likes, 19 replies

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  • Sedg
    Sedg renee72446

    Posted

    Hi Renee please don’t be terrified sweetheart this condition can be managed as countless women on this forum will testify.  

    First thing tho you have to know what you dealing with.  So you need a biopsy   Remember it might be something easy treatable 😊

    Go to doctor ask for referral to LS specialist as soon as you can. You can look on line and find LS specialist yourself in your area and go with name for referral. 

    GPs do not know enough about LS, in fact woman on this forum  know more than anyone. 

    One step at a time Renee and try not to be over anxious

    You are amongst friends 

    Sending big warm hug 🤗 x x x

  • george_32756
    george_32756 renee72446

    Posted

    This is what happened to me. I just had one itchy spot on my labia that I could have scratched the life out of and sometimes quite often did. I then 6 months later got an itchy spot above my clitoris. I had no white patches so my doctor misdiagnosed me with thrush. Blasting me with tablets, creams, gels and pessaries. I didn’t even know anything about LS so didn’t even occur to me to look outside the box. I just thought she was doing her best for me and I was run down. I broke down in her office because I was feeling tight every time I had sex and was tearing and this itch was unbearable! I’d looked in the mirror at how sore I was and realised I was smaller down there. She then sent me to a sexual health clinic who instantly diagnosed me with LS, done a biopsy to confirm and put me on clob. This stopped the itching but hasn’t stopped me from losing my labias. Go to a sexual health clinic is my advice as they are More aware of these symptoms. To this day I’ve never had white patches. Xxxx
    • sarb73328
      sarb73328 george_32756

      Posted

      George: did they not swab for thrush diagnosis before treating you? It infuriates me that doctors misdiagnose so often.  I too have never had white patches. I only got clear diagnosis after insisting on seeing a gynae - my GP had seen fusing and said the skin was 'pale' but suggested waiting and monitoring. I am so glad I saw the gynae who just by examination confirmed LS and suggested steroid straight away. My GP might have waited another year or so before prescribing. 

    • george_32756
      george_32756 sarb73328

      Posted

      Yes she swabbed me

      7 times but told me my levels were too low to be picked up on but that was 100% what it was! If she would have referred me sooner I probably wouldn’t be missing 3/4 of my vagina. Makes me so sad everyday. 

      I had no reason to disbelieve her as usually she is a brilliant dr and is booked up 3/4 months! I went back to her to get another prescription of clob and she wasn’t bothered at all. I said I think I need to go on antidepressants as this has made me feel so low and she was like “book another appointment if you feel you need them!” I can only hope she learns from my case so others don’t have to endure what I did. Xxx

    • sarb73328
      sarb73328 george_32756

      Posted

      I am with you in hoping she learns from your case. I hope all our doctors do. We should be able to trust them with diagnoses. I questioned my GP about whether there was any help to deal with the psychological effects of this disease (as it is devastating when you realise what it can do to you) and was told there are no resources for such things. It seems the days of empathetic GP's taking time to listen and advise are gone, certainly where LS is concerned anyway. 

      My GP did however give me amitryptoline which helps. 

    • Sedg
      Sedg george_32756

      Posted

      George sweetheart how are you ??  

      I 🙏🏻 You are feeling a little more positive with how things are going   

      Warm wishes for healthy everything ??X

    • Assilem7477
      Assilem7477 george_32756

      Posted

      I had the same gyno for 10 years. Diagnosed countless amt of times for yeast. I never had a reason to doubt him. I didnt know any other conditions existed. I have no whote patches. 1 labia disappeared and I went and told gim what I have! He still only wanted to treat me for bv. Now I'm 37 with 1 missing labia, 1 very small labia, shrinking clitorus, and shrinking clitoral hood. Lots of burning and sometimes itching. Constant UTI symptoms....

      I've been under a doctor's care this whole time. I'm angry at him and myself for trusting him.

    • Sedg
      Sedg Assilem7477

      Posted

      What a dreadful experience Assilem  obviously a time for change   For the good of your body and mind. 

      Find a LS specialist in your area or like George visit Special Clinic where they have all specialist consultants available, then you will gain confidence and get correct advice as far as they know. 

      Sending healthy wishes 🤗

    • Bridge_of_Sighs
      Bridge_of_Sighs george_32756

      Posted

      I know of other people who've been diagnosed through a sexual health clinic much quicker than through the gynaes. Stands to reason that they are familiar with variations in vulval health. Look and see if there is a vulval dermatology clinic in your area. There are a few around. Good luck and hugs to you.

    • george_32756
      george_32756 Sedg

      Posted

      I’m not much better to be honest. My mind is struggling to come to terms

      With it all to be honest. It’s the change in appearance I’m finding the hardest. I’ve started on the vitamin d3 and have done a massive food shop all healthy so let’s hope this helps! 🙌🏻🙌🏻 Keep coming on here and having a little read on everyone. Thank you for asking lovely. It’s nice to know your there xxxx

    • Assilem7477
      Assilem7477 george_32756

      Posted

      I agree. If this condition was this just the itching in the burning it would suck bad enough but I could deal with it. A change of the vaginal architecture so saddening to me.
  • sarb73328
    sarb73328 renee72446

    Posted

    Presumably your doctor has ruled out fungal infection: thrush? Once again, like many of us, you have been subjected to a casual response from a doctor. Insist on further investigation and/or referral. Good luck. 
  • micheline16004
    micheline16004 renee72446

    Posted

    Hi,

    If things don't get better, you should ask to be referred to either a doctor experienced in LS, a gyn, or a Vulva Clinic. I had to practically fight with my GP to get a referral but in the end she did. She referred me to a Vulva Clinic. She wanted to take care of it herself, but the meds she prescribed were not strong enough.

    Good luck! 

    • Bridge_of_Sighs
      Bridge_of_Sighs micheline16004

      Posted

      I had that experience too. My former doc thought she knew enough and got it all wrong... Got a great doc now, and go yearly for a check up at the clinic, just as insurance.
  • sandra01720
    sandra01720 renee72446

    Posted

    I had anal itching for many years. Eventually one spot on labia majora that was itchy for a long time. Occasionally itching on clitoris. You could definitely have LS without white patches. For me, I didn’t see white until I had suffered a long time with it. 
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