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Please help.. 22 year old LS sufferer

Posted , 8 users are following.

olivia90603
olivia90603

This is my first post on here so firstly thank you to all of you lovely people who post advice on here!

I was diagnosed with LS 6 years ago when I was 16 following a biopsy. Used dermovate and hydromol and things seemed to improve... to the point where I completely forgot to maintain my treatment. Last year I had a couple of yeast infections and after examining myself I realised my labia seemed to have shrunk. I had one small white patch and a little itching. Began using the dermovate again to prevent the fusing and I have made so many others changes over the last few months but the LS has flared up really badly and things just seem to be getting worse.

I wash only with hydromol ointment (I'm thinking about purchasing the emollient wash too), wash my hair in the sink, I wear only 100% cotton underwear, no tight clothes etc. but it just seems to be getting worse. the clitorus is now fusing and there is a small red lump on my clitorus. I have a doctors appointment in a week's time but it's a telephone call due to Covid. Last time I saw my doctor a couple of months ago she said it looked fine but it's got so much worse since then and I feel like GPs just don't take it seriously. I am hoping I can get referred back to a LS specialist.

Can anyone advise anything else that would help? I have seen baking soda baths have helped lots of people so I may try that. I have also stopped taking my pill as I thought that may help prevent me getting so dry down there. I am so young and I am terrified of how this is going to get worse. I'm not in a relationship at the moment and haven't had sex in almost a year due to fear of whether I look normal or if it's going to hurt. I have added some photos of what my labia looks like now and also a photo of the white patch which is the worst part.

Thanks so much in advance x

xximage

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0 likes, 18 replies

18 Replies

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  • fiona72391
    fiona72391 olivia90603

    Posted

    Hi I never knew I had LS until I went to my doctor which I thought was a yeast infection..when she examined me she told me I had LS cos my labia was fused..most of my information I get from these threads which are very helpful.I take bread soda baths every nite nd use olive oil to lubricate inside nd out nd so far it's working great..I use betnovate cream when needed but so far it's all good for me

    • olivia90603
      olivia90603 fiona72391

      Posted

      Thank you so much for your response. I am going to try the baking soda baths and I may see if my doctor can switch me back to Betnovate. I used to use this and dermo doesn't seem to be working for me. Thanks again. Glad to hear your symptoms have improved xxx

  • suzie37971
    suzie37971 olivia90603

    Edited

    Oh Olivia , I am so sorry you look so sore . If it helps I soak in bicarbonate of soda and Lavender oil . this is what I also put in my bath . I find it soothes and helps with the itching .

    I wash with Aqueous cream or have had Dermol 500 lotion from my GP both are effective.

    Not everyone agrees here but i use Vaseline as a barrier , I also find this helps against friction. Then Betnovate to sooth but very sparingly. I have used Sudocrem with both of the above when really suffering.

    Change of diet is a must and sadly i lapse a lot in times of stress.

    Sadly this is a very unique condition and we all seem to react differently to different things.

    My advice for what its worth is do not change or try too many things as it can make your LS worse . This I have done and had to go back to basics. Less is more i have found . hope you get dome relief soon and help from Medical Specialist xx

    • olivia90603
      olivia90603 suzie37971

      Edited

      Thank you so much for your reply. I used to use Betnovate and then for some reason I switched to Dermovate so I may see if I can switch back as dermo doesn't seem to be working. I have ordered a large bag of bicarbonate of soda so I will definitely try that in the bath. I'm hesitant to change diet as I have suffered with eating disorders but perhaps this is the best time whilst we're in quarantine. Thanks again for your reply and support xxx

  • Vero84
    Vero84 olivia90603

    Edited

    Hello,

    I find Emuaid very helpful and soothing with flare ups. It's a bit pricey but a little goes a really long way. I bought it from Amazon and arrived with Prime next day.

    I had this from age 12. At that time no one knew what it was, so didn't get treated properly and I had very bad fusion all over my clitoris and around my perineum. Luckily the symptoms went when I hit puberty but the fusion stayed. I am now 36 and just had surgery to fix it after finding a very great doctor. Believe me you still look normal. 💗 I'd have been happy to look like you do all my earlier life. If you want to talk more PM me anytime. xxx

    • olivia90603
      olivia90603 Vero84

      Edited

      Thank you so much for your response. It's so helpful knowing I'm not alone, nobody really talks about this condition so I have not told any of my friends. I may look into the Emuaid thanks again xxx

    • Vita23
      Vita23 Vero84

      Posted

      Hi, what kind of doctor did the surgery? I am looking into this right now. I live in the US. Did the surgery also eliminate the symptoms?

    • Vero84
      Vero84 Vita23

      Posted

      Hi Vita,

      I saw a gynaecologist in the UK. She was the first doctor I have met who knew at first glance what I had. She also did many of these surgeries before. I was super nervous as I have been living with fusions my entire life. She removed the fused tissue and did a Fentons procedure in the perineum area and also a biopsy to be sure. I healed nicely and sex is much better, no more fear of ripping the skin around my clitoris. To be honest my symptoms of LS (constant itching) went away when I hit puberty. What I have now is occassional mild burning but around the inside where the vaginal opening is. My doctor thinks I developed a bit of a vulvodynia. I have no other symptoms and the skin healed well. I have the whitish colouring of the LS still here and there, but that's all. The surgery was done in Circle Bath Hospital in Somerset and was covered by my private insurance, otherwise it would have been around £1300. Hope this helps xx

    • olivia90603
      olivia90603 Vero84

      Posted

      Hi Vero, thank you for sharing the story of your surgery. I have tried to find info of potential surgeries online but couldn't find much. This gives me hope if I ever get to the point where I need it. Glad to hear it has helped you xx

    • Vero84
      Vero84 Vita23

      Posted

      Forgot to mention there was a lady in the US who had the same surgery as me just weeks before, she posted a reply to help me. She could recommend a place to go to I'm sure. Let me see if I can find the thread for u.

  • sarah24152
    sarah24152 olivia90603

    Edited

    Hi Olivia,

    Hope the soreness is getting a bit better - if you're not already doing so try going without underwear whenever you can.

    I find the Hydromol ointment a bit thick and it hurt the delicate skin to try and moisturise it in so use Cetraben ointment to moisturise and whatever is left on the skin is what I use to wash with ( briefly) I do use Hydromol Bath & Shower Emollient on the rest of the body - its nice and gentle.

    Lots of help on this forum - Good luck !

    • olivia90603
      olivia90603 sarah24152

      Posted

      Hi Sarah,

      Thank you for your help and advice! I am finding one good thing about all of this self isolating business is I can go without underwear more easily and can pay more attention to my treatment, but I also think the stress of it all isn't helping... such is life! It's funny you mention Cetraben... my doctor has given me the cream version of this and advised using it to moisturise but I found it would sting. Maybe I will see if I can get hold of the Cetraben ointment, thanks again x

    • sarah24152
      sarah24152 olivia90603

      Posted

      Yep - Cetraben cream stung me too. If you order the Ointment be sure to get the smaller size just in case it doesn't suit you. I have tubs of gloop where I have just clicked online in desperation and not checked the size.

      I find whilst they may irritate the delicate area they're pretty good for moisturising the feet ..... and as a hairline barrier for hair dye !

      Who knows what else I may find them useful for in this crazy time !

      X

  • JLouC3
    JLouC3 olivia90603

    Posted

    Hey Olivia,

    First of all, I'm sorry to hear that you are having a bad flare up!

    I completely agree with the suggestions in the other comments regarding underwear and using demovate.

    I was also diagnosed with LS at 16 and I'm now 25 and have flare ups. Something that is a MUST for me is controlling my stress levels. Stress is my number one flare up so it would be worth trying different ways to de-stress. I have tried meditation, yoga and reading to calm me down and I haven't had any flare ups since I'm bee proactively tackling my stress.

    I really hope this doesn't come off as patronising! I was in your exact situation in Feb trying and buying all sorts when my specialist asked me if I was stressed and I was (due to work) she stated its most likely to be the cause.

    I hope this helps and I really hope you find something that works for you.

    Jess x

    • olivia90603
      olivia90603 JLouC3

      Posted

      Thanks so much Jess! Things seem to be improving in terms of inflammation- I've been using Betnovate twice a day and Cetraben ointment to moisturise. Had no itching or soreness for a while now, but I still have the white patches and fusing on the labia still seems to be getting worse. My clitoris has almost gone and it's happened so quickly, this is what upsets me the most. But you are right, I do need to manage my stress and I will look into what you have suggested. Thanks again best wishes to you x

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