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

    Hi

    We all get your frustration.  Saw my vulvar specialist last week and asked again regarding having an op they will not do it whilst the condition is active.  Which mine has increased in the 3 months since seeing her.  My vulva is virtually encased and like yourself having similar problems.  

    She has a lot of empathy compared to a lot of Gynis/Dermatologists.  Sadly though and there is now way to sugar coat it, they know there is no actual treatment for this condition,  hence why you will read on this forum different attempts to cure/slow it down.   Which at some point we will all try.  It also appears that some doctors abroad are offering certain methods but most of us are never going to be in a position to afford it.  

    Regarding uncomfortable intercourse.  Has your gyni suggested the use of Sylk rather than KY gel?  It is far superior and you can buy it cheaper online rather than on prescription unless of course you qualify for for free prescriptions.  I have also been given varying sizes of dilator to try and keep me “stretched”.    Have now been told to use mine 3 times as week and am now back to using the Dermovate everyday plus a barrier type excema cream.

     

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  • Posted

    Oh Ann that does sound awful. Some of those consultants are dreadful. Many people have had poor experiences with, usually male, consultants who are arrogant and unsympathetic. Whereabouts in the UK are you? I can recommend a great GP in Bristol who is a specialist in skin and very knowledgable with LS. I've abandoned the Vulval dermatology clinic now as my GP seems far more clued up and is actively trying to increase her knowledge as she has so many patients with it.

    Have you read the 'Experiment with Borax' thread? Some of us are finding various degrees of reversing happening. Mine is very slow but seams are appearing where things had disappeared before. There's enough to give me hope. Do read it.

    There are a few good specialists and GPs around, but the best source of information and support is on here. And it's great that you don't have cancer! that's worth celebrating...

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    • Posted

      Hi I’m in Bristol and would be interested in finding out who the Gp is with an interest in LS as mine treated me for thrush for several months and didn’t seem to notice my LS at all which has resulted in lots of scarring. 
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    • Posted

      Hi

      I'm sorry to say that she's left the practice. Her name is Dr Monica Cuellar. She was at the Helios Medical Centre on Stoke Hill (which doesn't have a catchment area). I've been told that she's having some time off and then may do locums and a small amount of private practice. If she does, I'm over there like a shot, just for the LS, whatever it costs. And I'll post here for Bristol people so they know.

      In the meantime, did you know there's a Vulval Dermatology clinic at St Michaels? You can get a referral from your GP. I've had mixed experiences, never seen the same doctor twice, and they just tell you to do the steroid routine, but at least you're being checked yearly by someone who knows what they are looking at. I don't tell them about my alternative health regimes, (I haven't met one yet who looks like they'd be interested) and just get checked for my peace of mind.

      Good luck

      Bridge

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    • Posted

      Thanks for getting back to me Ive been referred to the st micheals clinic but no appointment till march next year!!!! which will be 46 weeks from when I first went to my GP I'm really disappointed by the NHS responce so far.

      What alternate regimes have helped? I think I'd give anything a try

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    • Posted

      Hi Sally

      Just going to say that I'm expecting a bunch of teenagers to walk into our open plan space so if I stop mid-word, that's why! will resume on Monday if necessary.

      I spray with Borax (20 Mule Team, bought online) diluted in a spray bottle after every toilet visit. I'm just having a 3 week burst of Dermovate as I just felt my skin needed a change, but going back on the borax next week. I wash after every toilet visit, I think removing urine from the skin has made a big difference. I also put oil on, again after every toilet visit. As a base I use avocado or olive and then put a few drops of essential oils in. I have Turmeric, Palmarosa, Frankinsence and either calendula or chamomile something beginning with M (it's blue). I look for anti-inflammatory and anti-bacterial properties in the ones I use. Go the the wonderful Amphora Aromatics on Cotham Hill, they've got everything there and the women behind the counter know their stuff. they've got a website too. Make sure you change every few weeks, when your bottle is empty use something different. Try to have three things in your arsenal and rotate them. LS gets used to things if you stick to a single routine. You can alternate Borax with Bicarbonate of Soda, and also put coconut oil in the mix. I overused coconut oil and got sensitive but I've just started using it again and it's OK.

      I can give you some Borax to try, if you DM me. I am also trying to start a support group here, if that's any use.

      That's rough, having to wait so long, they will just tell you to use Clob though, but it's reassuring to know that you're being kept a (yearly) eye on. You could try ringing them and asking for a cancellation. It might work. I guess a combination of NHS cuts and more women being diagnosed isn't helping.

      It takes me a while to reply, but I will, when I can (not in school holidays usually).

      Sorry for typos, rushing.

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    • Posted

      i thought NICE NHS guidelines you had to be seen within eighteen weeks from referrel. 46 is no good at all. i used savings to see a specialist, which i know i shouldnt have to do and doesnt at all mean Im rich but the NHS for some things is getting so bad.

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    • Posted

      yes it should only be 18 week wait but apparently they have one Dr on long term sick leave and only 9 appointment spaces each month . I have lodged a complaint but don't think it will make a difference .

      I felt I couldn't wait until the NHS got their act together so have been to see a private Dr. not sure it was worth the £160 to be given a £3.50 tube of cream but its scary when you read about what can happen if this is left untreated.

      Im really disappointed by the NHS wait for simple treatment that can prevent avoidable permanent damage which is both physical and psychological .

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  • Posted

    Thank you all for your suggestions, I really appreciate it and will follow up.  I've just found Borax powder on line (borax decahydrate) and will order it.  Then give it a go...

    I'm seeing a female gp tomorrow and will ask for clobetasol. 

    Thank you again - I'm so glad this site exists.

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  • Posted

    Hi Ann,

    its saddened me to to read your post as you are yet another person including me who just gets failed by these supposed gynaecologists.  You did well getting that amount of time, females aren’t always better the one I saw said everything looks normal, what you are joking my minora are reabsorbed also and have no ridges or anything and that’s normal apparently, I was given four minutes.  The ushering out is a really horrid thing to do.  I hope you find some more answers somewhere.  If it wasn’t for ladies on here describing the same thing I don’t know what I would do, I would be even more frightened as this is hard to talk about to people.  I wonder why it’s re absorbed, I would love to know. Xx

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    • Posted

      Hi Sue, thank you for posting - it's such a shock to have this and even more of a surprise to see how widespread it is - yet not talked about / publicised.  I'm signed off work until next Tuesday so will spend time hunting for answers - as has everyone on this forum smile I must say again that I'm so happy to have found this site and all the informed and brave people posting on it. 

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    • Posted

      You’re welcome.  I’m wondering now if L S is as rare as they say or that a lot of ladies don’t want the embarrassment of seeing someone as let’s face it it is a very intimate part of us or just don’t notice changes.  I’m shocked how quick it reabsorbs to be honest, that’s what is so frightening.  You look one week and then the next it’s gone.  Hope you relax off work and it does you some good. X
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    • Posted

      When I was diagnosed, I was told that one in every 1000 women had it. That soon came down to one in 500. A couple of years ago a friend was diagnosed and her doctor told her she thought it was one in 50, and then when I saw my lovely dermatologist doctor (sadly gone now) she thought it was so widespread that most women would get it at some point.

      I had a chat with a female pharmacist who said that recently she'd seen a dramatic rise in prescriptions for thrush and other itchy vulva creams, so much so that she's thought it strange.

      Either it's on the increase or people are getting less embarrassed about going to the doctor...?

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    • Posted

      Maybe the internet helps in some ways too. Thats how when I first had symptons I found L S. Years ago we had to go to the library or trust out GP.x

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