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[Robin]

Hi All,

It’s a long time since I’ve posted but I’ve got a query that hopefully somebody might be able to help with.

 I have vaginal atrophy which was untreated for a long time but improved after a few years of treatment. There’s still some daily discomfort but I’m in a much better place with it than I was. I do however have occasional flare ups of very intense itching and burning although not as often as I used to. This latest episode has been on and off for a couple of months so I had a look to see if there was anything visibly going on. I was surprised to see that most of my perineal area has become white. I had it looked at by my GP as I suspected lichen sclerosis but she doesn’t think that’s what it is as although it’s white it’s not thickened or plaque like. I obviously don’t want to treat it unless it is LS as the steroid might make my VA worse.

Sooo my question is does lichen sclerosis always cause thickened plaques or is it sometimes just smooth and white?

[CLKD]

Firstly - which product are you using for the VA, sorry - you may have said but I'm short brained [as opposed to short sighted].  'Vagifem' can be used nightly along with 'ovestin' for the outer labia etc..  If the product is working correctly, you shouldn't have any underlying symptoms.  Some find 'yes' products of use along with VA treatments.

If your GP isn't worried, but you could of course ask for a referral to a dermanatoligst.  Put 'lichen sclerosis' in2 the search box to see if anything pops up, I know it's been discussed.  If your search doesn't work, I'll bounce some threads.

[Robin]

Thanks CLKD. I use vagifem daily and sometimes the Estring as well, also use Yes VM several times daily. Unfortunately I react badly to the estrogen creams which I why I still have some external issues.

I’ve done a search but haven’t managed to find anything that directly answers my question. I think I would consider a second opinion though if others have had lichen diagnosis with same presentation as me

[CLKD]

Is it the active ingredient or fillers that causes the reaction, how does that manifest?  When my urine is too acidic I get a sore bottom ....... not that I leak but when I pee sometimes it fails to go in the right direction 

[Robin]

I think it’s the fillers because I can use vagifem. I’m allergic to many things topically. Can’t use ordinary soaps, shampoo, moisturisers. Have spent the last 50+ years hunting down products I can use only to find them eventually discontinued so the hunt begins again 

 The remaining VA is external on my vulva so I think I’m stuck with that until they create a more skin friendly estrogen cream. I have a feeling though that the bouts of more extreme burning and itching I get occasionally may be linked to the possible lichen sclerosis so I’m hoping someone might know if it always presents as a thickened plaque

[CLKD]

How R U with KY Jelly-type products, I use that when sore or itchy.  Even 'savlon' helps.  [DH tells me not to use too much in case it heals up]. 

'simple' products can be useful.  Or make your own soaps?

[Robin]

I can’t use any of those CLKD. The thought makes me cross my legs and squirm  . They’re all awful products for me but thanks. My skin is a real nuisance

[CLKD]

Did U uncross the legs yet 

What about honey products, honey is a natural healer.  Though sticky.  Silver is an antiseptic but that's a little too pricey, probably 

[Joaniepat]

If you suspect LS, you could ask for a referral to a vulva dermatologist, or see one privately. They are better placed to diagnose than a GP. It is unfortunate that you can't use the estriol creams, because Vagifem and Estring don't necessarily do much for labial issues. Have you joined the private Vaginal Atrophy Facebook support group? (There is one for LS as well.) The lovely moderators there seem to know all there is to know about VA!

JP xx

[CLKD]

  a Mine of Info aren't we! 

[Robin]

Hi Joaniepat, hope all is good with you?

I’ve suspected it for a long time. I think you kindly gave me some advice a year or so ago about it but there was barely any white then. I was considering going private at the time but wasn’t in a very good place at all and ended up sticking my head back in the sand and hoping it would go away. I will pay privately now if I have to but not sure if I’m just being over anxious about the white patch. I’d expected the GP to either say yes it was lichen or she wasn’t sure but would refer me so not sure what to think now.

I’m not on Facebook so not on any groups at all. I would like to if it was possible to join Facebook only for that reason and not have friends/family know I have an account. Is that possible? I have no idea how it all works 

[Whatsupwiththis]

Hi Robin.  Totally agree with Jp and CLKD.  Have you researched Intrarosa?  Some ladies have had great success with this product when Vagifem and/or estrogen cream is unsuitable.  I personally have mild discomfort from fillers in vagifem.  It leaves white, chalky residue that can be annoying and bothersome.  This *might* be what is causing the white discharge but LS needs to be ruled out.  If no LS then possibly it is the residual 'morning after the vagifem night before'.  Good luck and keep us posted.

[Robin]

Thanks whatsupwiththis.

yes I tried interosa but unfortunately didn’t get on with it at all and it took ages to back on track after using it. I find the vagifem ok for inside although it took a long time using Estring before the tissues were supple enough to tolerate it. I know what you mean about the white discharge and the discharge sometimes feels like it burns but its my skin that’s white but it’s not thickened and GP said it would be if it lichen. I have no idea whether that’s right or not

[racjen]

Hi Robin, sounds like your GP doesn't really have a clue. I have LS, and it doesn't present as thickened plaques of skin, that sounds more like lichen planus, which I don't think affects the genital area. LS typically presents with areas of smooth whitened 'pearly' skin, which may be thinner and more delicate than the surrounding tissue. In advanced cases you can develop a build-up of scarring, because the thinned skin tears more easily. It causes intense itching and irritation and needs a course of steroid cream to get it under control. You need to go back to your GP and insist on being referred to a specialist - your GP can't diagnose it definitively because it needs to be done by biopsy. Good luck x

[Robin]

Hi Racjen,

Your description matches exactly with what I’m experiencing. The GP I saw this time was lovely but my gut feeling was that what she said wasn’t quite right.  I get into such a state about having to interact with doctors after bad experiences but hopefully knowing that the symptoms do fit will give me a bit of confidence and the push I need to try and take things further finally.

It’s a long time since I’ve been on the forum but I hope you’re feeling much better than you were back then. Thanks for the info xx