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I am 58yrs and have been diagnosed with both LS & LP.

I have had biopsies (neg) and treatment with Betnovate and emollients.

The initial itching and thickened ridged skin is gone as has the majority of

discomfort. However, I now have significant fusing of the surrounding skin

and am unable to have penetrative sex.

I have been given a dilator along with an anaesthetic gel but am

finding it very painful. Has anyone been through this process and what was the

outcome?

I feel very isolated and alone in dealing with this.

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14 Replies

  • Posted

    Hello there, the first thing you'll find out is that you are not alone.  I'm no longer sexually active - others on this site are, so don't feel that's your future - but certainly keen to prevent any further fusing.  If you look on the major online selling website you will find dilators which come in sets from little finger width upwards, so you can begin with the smaller ones and then move upwards: this might help.  Every best wish.

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    • Posted

      Thank you , I am so glad I found this site. It's very reassuring to know others are experiencing the same. Not hat I get pleasure in others discomfort. I have been given the multiple sizes and will persivere.

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  • Posted

    Dear Wero,

    Please know you are not alone! There are many of us, and you do not have only the dialator as a choice for treatment. I do not know where you are in the world, but here in the US a recent treatment has been approved for LS. It consists of laser treatment to the affected areas. By using the directed laser on the tissues is rejuvenates the tissue and can significantly reduce the loss of architecture. I had the procedure done a little over a year ago. And it is amazing!! There were three treatments 4 weeks apart. The initial day after and for several days it was quite uncomfortable, but the results were worth the discomfort. My tissue is much plumper, and doesn't itch like it used to. I am able to be intimate with my husband again, and with lubrication, no tearing. I was able to pay for the procedure with my pretax medical spending plan, as it was not covered by my insurance. I am hoping with more people reporting excellent results maybe the insurance companies will start to cover it. It is much better than trying to restructure after all the damage is done. The procedure in the US is called, Mona Lisa Touch. I wish it had been available earlier, I could have avoided a lot of pain and loss of tissue.

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    • Posted

      Thank you for your answer. I am in the UK and think my options are limited. I do attend a vulval clinic once or twice a year and see a dermatology nurse specialist. The clinic is full to capacity and often my appointments get cancelled. I will initially work with ghetto dilated but will investI gate further the Monaco Lisa touch. Thank you
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    • Posted

      Hi, I hope you don't mind me asking ,I'm from Cheshire.

      Which part of the UK do you live,?

      I'm just curious about what we have available in the UK

      Many thanks x

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  • Posted

    I think it may take time for you. I use the Clobetasol every other day or twice a week and believe I always will. The vulva skin doesn't hurt like it did at first so it gets better. Important- moisturize all the time, I use Aquaphor ointment.

    I also had Mona Lisa Touch and think it helped with vaginsl opening.

    Don't be discouraged. I think the anatomy can improve and with the therapy use of dilators, sexual activity is possible.

    Keep trying. Best wishes!

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    • Posted

      Thank you for the information. Clobetasol did not help and I have been prescribed Betnovate which helps. My symptoms are calm but the skin is friable and splits easily. I also moisturise daily with white soft paraffin as this is soft and easily massaged into any leisions. I only wash with Dermal. Really my main issue is my relationship with my husband. It's miserable and I worry where it will end. But you have given me hope, thank you again.

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  • Posted

    You are not alone.  Many of us LS and LP sufferers here.  And what's more - there is hope that your 'bottom' will return to fully functional. 

    ?Dilation is one item on my list.  Next are the baking soda and borax baths and rinses after bathroom visits.  Baking soda and borax made that the fusion disappeared.  Mind you - it took a long period of time and determination.  But in the end I won. 

    ?I would encourage you to read some of the topics on this forum of various good treatments that have helped many. 

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    • Posted

      Thank you. I am gradually learning more about the condition all the time. I was diagnosed just over a year ago but think I have had it for much longer, in fact possibly around 5 years.

      This is all so reassuring.

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    • Posted

      The forum on this site about Borax is called "an experiment with Borax". Please read it from the beginning, it will truly encourage you! I found the site about 6 months ago and all my symptoms completely stopped! I am still waiting for the fusion to completely release, or at least more than has up to now. I was still be patient and I am.

      God bless and guide you in your healing.

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    • Posted

      Thank you, I have read the post.

      Really interesting, I am going to do further reading and may try this

      Alongside dilation.

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