Loss of vulvar architecture

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I saw a gynaecology oncology consultant yesterday, who confirmed that I don't have vulvar cancer (hurray), but said quite casually that 'there is significant loss of vulvar architecture due to lichens sclerosus'.  I tried to push him on what this meant and he said that both sets of labia have been reabsorbed into my body and that my clitoris is also being absorbed.  I asked what could be done and he got impatient and said nothing, that it was very common and that he would refer me to a dermatology clinic.  I asked again for more details and if it was associated with the split in my perineum, difficulty in passing stools and finding sex very painful and he (really, I'm not exagerating) became almost cross and said yes, the scar tissue is in a figure of 8 pattern around there but it was very common and that I shouldn't worry about it!  He then stood up and motioned for us to leave, which we did.  DH did say when we came out - well that was fast - we were with the consultant for just under 15 mins.

So, here I am, trying to be happy that I don't have cancer, but feeling completely lost and so, so upset...

I'm stunned that the loss of my sexual organs is nothing to worry about? Does anyone have any advice about where I can find a consultant in the UK who specialises in 'loss of architecture' and lichens sclerosus?  

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  • Posted

    I am not sure where you are located.  

    There is a dermatologist  In Los Angeles

    Using stem cells to treat Lichen Sclerosus.  His name is Nathan Newman.   I also am suffering with loss of architecture, much pain and suffering.   I am scheduled to have my first treatment this week.  I have used clobetasal, tried chinese herbs and borax.   All have helped alleviate the terrible itching and burning, but none have really helped the progression of this disease.  I am very hopeful about this treatment. 

    If you google stem cell Lichen Sclerosus Dr Newman you will find information about this procedure.  

    Expensive and not covered by insurance, but this is the first thing that has given me hope that I might get my life back. 

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    • Posted

      Hello Kruthko, thank you for posting - it's very interesting.  I'm based in Oxfordshire in the UK, but if i could afford it I certainly would look into this.  I hope your treatment is successful and that you do indeed get your life back. Ann.

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    • Posted

      I saw a blog someone is writing on stem cell treatment for LS.  It looked very promising.  If I was younger I might seriously consider it.  For the moment I am just hoping to slow the progression down as much as I can and keep the itch at bay.  Good luck with your treatment and let us know how it works out.
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  • Posted

    Hi ann, yeah, that sounds about right.  I have no idea why these pompous specialists think it is okay to speak to someone like that, it is terrible.  I would definitely find someone that cares about their patients.

    I dont know whether this helps, but what I have found out recently is that some women are born without their Labia minora and have found to have no significant problems with that, and so I have decided not to worry anymore about the fact that I have lost one side of my LM and the other is going as well.  I am just not going to dwell on it anymore, I don't have itching or white plaques of skin and so, therefore, I am thankful that that is all I have to worry about visually!  

    However, If you look online and on on this site you may find posts regarding the Mona Lisa touch. I have not had this treatment but many women have, and it supposedly helps and some have even found having sex again less painful.  In the meantime, I have found that liberally applying KY jelly on a vaginal dilator and inserting that seconds before sex helps a LOT.

    Try not to be too upset, I think if you find a good consultant, you will feel less upset, its not that bad once you come to terms with it, and you are probably still in shock.

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  • Posted

    Ann what a double edged blow for you. 

    Hoorah no cancer and as for the symptoms you describe all sadly classic symptoms of LS.  

    With the correct treatment for you some of your ‘Ladyship ‘

    architecture may change 

    Though truth be told for me, mine hasn’t,  though  sensation in my clitoris has remained 🙏🏻 

    Lots of things depend on age, diet and location as you find a treatment to suit you 

    Please be mindful that there is no cure and only management for this condition. 

    I am 67 and was diagnosed about 16 years ago  

    Treatment has not changed in all that time from the medical profession.

    However on this forum are women who deal with and know more than any specialist that I have seen  

    Professor Sean Kehoe is my consultant and the most honest and informed professional I have ever met regarding LS. Even he learns from the women he treats 

    I live in Warwickshire and he is in  Birmingham. 

    As far as the spitting of your perineum, I share that problem too 🙁

    To help with passing soft stools I take Fybrogel  daily 

    I would advice you to look online for lichen sclerosis specialist and get clear advise as what is best for you.  

    Sadly Ann there is no Golden Vagina Fairy to help but this forum will lead your way. 

    Sending big cosy hug 🤗 to you XX

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  • Posted

    Ann, it sounds as if you have had a horrible experience with your gynie and you should definitely find someone else to go to. If you read through this forum you are sure to find something that will help you with your symptoms. Borax seems to be a favourite ( dissolve pinch in half a cup of warm water and use as a spray). Someone else uses Australian Dream Cream, coconut oil is mentioned often. I use a mixture of 4 tablespoons Organic Castor Oil, 1 DROP of Lemon Grass Essence Oil and 2 DROPS of Lavender Essence Oil. Don't exceed the drops and use a small dropper. It seems to me that it is best to only use a steroid cream once or twice a week to stop the fusing.

    Hope you find all the support on this forum comforting, I certainly do. I am going to see my gynie this morning to see if my lesion is healing so that I don't have to have an operation next week. I have been using estrogen cream for the past few weeks.

    Jan

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  • Posted

    hello Ann and i want to say i feel for you. i saw my lovely dermatologist who said my 'architecture' holding up well when i saw 2 months ago. I checked it out today and left labia pretty much been absorbed into my body. Its pretty scary and i cant help myself but look up images of LS online and feel so sad that my vulva seems to slowly be disapearing before my eyes. It gets so sore but i dud read on a helpful page that i will try and locate again and let you know if i can, that coconut oil makes a great lubricant and just a smear of in day is as refreshing as drinking a large glass of water when its hot. GO AND SEE A DERMATOLOGIST AS THEY MORE SyMPATHETIC and get yourself sone sompke coconut oil. BEST OF LUCK X

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