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[Melbury]

I have never had thrush, but was diagnosed with LS a year ago - quite a shock. 

No lovemaking for about 18 months now, just too scared it will be a painful disaster.  Keep thinking I must really make an effort, but very nervous about it.

[flushtered]

Hi Melbury
After having my lichen sclerosus diagnosed, I wanted to keep trying to make sure that I wasn't closing up and was more worried recently as more troubles in that area.  Decided that being peri-meno was probably the cause though as the LS has been okay-ish for a while.  Think I will need to make a GP appointment soon though to have both things checked out - I've only had my LS checked out once since initial treatment with dermovate 2 and a half years ago. 

[flushtered]

I managed to get GP appointment for tomorrow as they had a cancellation, so should find out if she thinks my dryness probs are LS or peri-meno and hopefully get something to help.  Also bit worried about sore bit at top of boob, don't know if I was just over zealous when checking myself and I've maybe just made it sore with pressure?  Has anyone had similar?  I'm quite bony at top of them anyway so difficult to tell if anything there, glad appointment is tomorrow  -been a bit irritable because of it. 

[flushtered]

Dryness/tightness was Lichen Sclerosus again, got more Dermovate for it.  Boob/chest discomfort was inflamed cartilege probably caused by man-flu last week, to take ibuprofen for it.  Relieved about that, but bit fed up about the LS, thought it was waning - obviously not.

[Firewalker50]

I was recently buying some Yes products.  I noticed a section on Lichen Sclerosus.
I have nothing to do with the company - just happy with their products and thought perhaps the section may be of interest to those suffering.  All organic and 'everything nasty' free.

I am fortunate not to suffer from LS and so pleased!  Hope the information helps.

Fx

[flushtered]

Thanks Firewalker50, will try something from them as don't like to use the steroid cream all the time.

[Firewalker50]

Those of you with LS may find it helpful to read this article.   It is quite heavy to read all at once, but it has references, and it gives a view on an alternative or complementary way of treating LS.   It gives all the background of the cause, which is the heavier bit and gives a view of how to treat the causes rather than the symptoms.
It also makes reference to vaginal dryness towards the end.

I guess if I was suffering so badly, I would be open to any information and potential help. 

http://www.wholewoman.com/library/content/articles/LSRemedy.pdf

Fx

[flushtered]

Thanks again Firewalker50, I knew some of this but did not know about the use of Red Clover so have ordered some tea and tincture.  Will let you know how I get on.

[shrimpette]

Hello Ladies, I too have LS. I was diagnosed about 10 years ago when I was 37 and have managed the symptoms with dermovate & support from dermatology. It was quite a shock and the itching is intolerable. I must read the article from firewalker since the medical profession have labeled LS as auto immune since they don't know what causes it.
I understand that it's quite rare but there are a few of us here. I make sure I have regular check ups with GP and report any changes in appearance, texture of skin and so on. At the moment meno doesn't seem to be affecting LS too much thankfully though HRT alleviating some of the dryness. Big hugs to you all. xxxxx

[flushtered]

You've been coping with it for longer than me then Shrimpette, hug back x

[flushtered]

I have never had thrush, but was diagnosed with LS a year ago - quite a shock. 

No lovemaking for about 18 months now, just too scared it will be a painful disaster.  Keep thinking I must really make an effort, but very nervous about it.

Melbury, Shrimpette, Vera and Eddie
When I was at dr this week, she said that it is best to keep having sex to keep the entrance to vagina stretched and prevent it from narrowing.  She said to make it easier the best thing to do is for partner to use a condom with lubricant on it to prevent too much friction.  I have also received yesyesyes lubricant that Firewalker50 recommended and will try this and I have also received red clover tea and tincture today, will try them from tomorrow as they are mentioned in the article Firewalker50 also posted on.  Will update with results.

[Firewalker50]

Hi Flushtered.  I hope your plan works - or at least shows signs of improvement soon.
FYI - I use the oil based first and then the water based.  My ex-partner prefered the oil, so often he would use the oil and I would use the water based.  I made sure I had plenty of the water based inside and for me at least it felt very natural actually.  I found the individual applicators helpful for inserting it, and it can be inserted a little in  advance if you don't like the thought of 'fiddling'.  To be honest, the fiddling is minimal.  I have not used it ever with a condom so cannot comment on that.  I personally find a condom causes friction and dryness in me.

I would suggest you experiment with the combinations and timing.

Good luck.  Let us know how it works out for you please.

Fx

[Elena]

I was told at age 19 that I had Lichen Sclerosis. I was referred to the local GUM clinic by my stupid GP. I had never had sex and it was the worst place she could have sent me

My symptoms were pain and a build up of what I can only describe as White Stuff which, when I squeezed the area around my clit, would seep out. The pain would then subside.

The "doctor" at the GUM clinic thought at first I had some kind of genital warts (!!) and tried to freeze them off.  The pain was excrutiating. I had to be held down by an assistant despite the fact that apparently I had been given twice the normal dose of anaesthetic.

I was then given this explanation of LS, sent away with steroid cream and told to come back if it got any worse.  Well then what happened was that my inner labia disappeared!  They fused with the  outer labia.  I used the cream very sparingly as I hated going to the GUM clinic so much. I would go for years eeking out my tube of steroid cream. 

After I had my kids I moved to another area and attended a different GUM clinic.  I went in a panic as I had read in a women's magazine that LS could lead to cancer.  I had never been warned of this and I was really angry.  The doctor there was patronizing and acted as if it was up to them, not me, what I knew about my own body.  This was back in the 80s.  He mustve felt guilty though as he later rang me and asked if I could attend the clinic on a day when the dermatologist was in attendance. Unfortunately I couldnt as we were in the process of moving house again.

I arrived at new GP and told her all about my LS and she referred me to local dermatologist who suggested that I didnt need the steroid cream, just to continue with aqueous cream and used Diprobase as a moisturiser. I have now been doing this for 18 years and it has worked fine although I do still have the original problem of the White Stuff.  This stuff builds up underneath the hood of the clitoris and causes pressure and pain. I find the best thing is to have hot baths every day and massage the area so I dont get a build up of it. I found this via the web and my new partner who basically diagnosed me.  After that I got referral to gynae who said she didnt think I had LS.

So all those years of ghastly attendance at the GUM clinic were for nothing. I was angry about this for a while and then I thought well there are so many things that are much worse for some people I need to put it behind me and move on.

SO, I have had no inner lips since age 20. I had no idea that this would happen to others upon reaching the meno, I feel almost normal now

Thanks for letting me vent about this. I never talk about it to friends.  Only my ex husband and my current partner know the story.

Ellie

[flushtered]

Hi Ellie,
Feel free to vent anytime - I know what you mean about never talking to friends about it.  What a time you've had with wrong diagnosis, it's a disgrace - they're meant to know these things and not second guess them.  Can't say I've been bothered with white stuff, it's the infernal itch in bed at night that's the worst thing for me but the steroid cream does get rid of that.  I think the red clover tincture is also helping, but can't drink the tea  very often.  My inner lips have all but disappeared too as well as my clitoris.  The narrowing of the opening to my vagina has caused difficulties but lubrication is helping.  I can't have too hot baths as it makes it itch worse.  As you say though, there are worse things that people have to go through and on a scale of 1-10 on how managable it is for me with 1 being okay and 10 being very bad, I'd probably say I'd score it as 4.

[Elena]

Thanks Flushtered

see this is what makes me think I dont actually have LS. I dont have your symtoms I have my own set  of "lovely" unique ones.  Basically I think that my clitoral hood is too tight.  That's why the stretching helps but woe betide if I dont do it for a few days

Ellie