Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Robin on April 30, 2021, 11:04:25 AM
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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?
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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.
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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
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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 :-X
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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
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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?
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I can’t use any of those CLKD. The thought makes me cross my legs and squirm ;D. They’re all awful products for me but thanks. My skin is a real nuisance
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Did U uncross the legs yet ;D
What about honey products, honey is a natural healer. Though sticky. Silver is an antiseptic but that's a little too pricey, probably ;)
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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
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:thankyou: a Mine of Info aren't we! 8)
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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 ;D
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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.
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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
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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
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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
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Hi Robin, good advice there from racjen, hope you get to see a dermatologist soon to get it under control. If you end up going private it will be money well spent :)
As to Facebook, you've also had some great advice on your other thread. I only use it for the VA group and a similar one for chronic UTI and no one has ever tried to contact me. You don't have to put any details on your profile, nor any kind of photo if you don't want to.
I'm fine, thanks for asking. Hope you are doing as well as can be expected after the strange times we've all been going through!
Best wishes,
JP x
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Thanks Joaniepat,
Im keen to interact with people from the Facebook groups but not so keen for what I’m looking at to be flagged up to my plumber, kitchen fitter etc ;D but it does sound as though it’s possible to avoid that so 🤞🏻
Lovely to hear you’re fine. Me too, I feel very lucky not to have been impacted as badly as many have this last year.
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Thanks Joaniepat,
Im keen to interact with people from the Facebook groups but not so keen for what I’m looking at to be flagged up to my plumber, kitchen fitter etc ;D but it does sound as though it’s possible to avoid that so 🤞🏻
Lovely to hear you’re fine. Me too, I feel very lucky not to have been impacted as badly as many have this last year.
;D I can assure you that my plumber knows nothing about my 'personal' plumbing! As these groups are private, they do not show up on one's profile ;).
JP x
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Thanks Robin, I've been thru a whole meltdown and up the other side during the pandemic, but it has resulted in me being put on drugs (quetiapine and duloxetine) that are actually helping alongside the HRT.
You shouldn't have to go private with this, I saw an NHS specialist - it's an uncommon condition but perfectly run of the mill to a proper specialist.
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Sorry to hear you’ve been through so much. I took both of those medications, the quetiapine for quite some time. It’s really good to hear you’ve finally found something that helps.
I’m considering one more try with GP in a few weeks and then go private if they won’t refer me. After being misdiagnosed for so many years and being put on so many medications, enduring awful treatments unnecessarily in my case and horrible experiences with some doctors, I’m at the point where I’d prefer debt to emotional upset. It shouldn’t be that way but although I’m in a good place now with the right menopause treatments I don’t have the necessary defences to go through any of that again. Hopefully I won’t have to. Just need to find a bit of courage and try again 🤞🏻
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Robin - ring the surgery on Monday and ask for the referral, why wait?
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Would just rather wait till my nerves have recovered from this appointment first ;D and also as GPs are really struggling with workload at the moment there’s a hefty dose of guilt added to the mix. I will do it but just need a bit of time to get in the right frame of mind
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FYI,
Doctor Victoria Swale is and excellent dermatologist specialising in the Vulva.
Peppermintyxx
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Hi pepperminty,
Unfortunately I’m northern so she’s too far to travel to. I found somebody a year or two since who’s only an hour away but I didn’t get as far as booking an appointment. I can’t remember any details but hopefully will find her. It’s good to have a back up though in case I can’t find anyone so thank you
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Hi Robin,
hope you get an answer and some relief soon. This may be of interest also. x
https://www.bad.org.uk/shared/get-file.ashx?itemtype=document&id=6475.
PMX
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Thanks PM,
I’m reading through it now and it says that lichen sclerosis can be managed in primary care or hospital so I wonder if they might not refer me for that reason. Will continue reading as it might give more detail but I’m guessing with the NHS being under such strain at the moment if there’s a reason not to refer they’re probably likely use it.
Robin x
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Hi Robin,
I think a multidisciplinary team is the ideal. But a dermatologist who specialises is the best person to diagnose. You should be more likely to get a correct diagnosis. If it is not clear what it is, a biopsy should be done really, as treating LS involves long term steriod management and you don't want to be using that if it isnt LS.
You could always call your local hospital and ask if they have a vulval clinic also.
I would also consider using 0.01% estriol cream at some point, after any issues have been ruled out -start with a tiny pea size on the outside every other day and if all is well build up to a blob every day around/ on the vulva area to build up the skin. It will take 6 months to a year to see improvement, but it should look and feel much better on the outside.
Obviously get medical advice, but most of the issues down there are caused by lack of estrogen later in life.
Misdiagnosis is common, so make sure you clearly and strongly state that you have been before and I would take a friend or a partner with me as unfortunately it is statistically proven you get better service if you do!
PMX
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Hi PM,
Will give GP one more go if I can pluck up courage but think I’m probably going to need to go private to get that level of care.
She has prescribed a mild steroid but I haven’t dared try it yet as if if she’s right and it’s not lichen then it could possibly do more harm than good.
I’d love to use estriol cream but unfortunately is causes an immediate reaction. I can use Estring and vagifem but other than yes VM haven’t found anything I can tolerate externally which I think is a big part of my problem.
I think I’m more likely to be able to take my husband with me to appointments if I went private too so that might be another reason to take that route
Thanks for your help PM, it’s much appreciated X
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I have LS I was just given steroid cream which I’ve hardly used. For the AV I was given estriol and testosterone but I don’t have a partner and am not interested in plumping up my privates for this purpose but going au naturel into old age. Mine developed back in 2013.
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Hi Robin,
First you need to get the inflammation down, so the skin will have a better chance of accepting the estrogen, that can happen eventually. That usually means a steriod follwed by a moisturiser such as hydromol. And no knickers .Please feel free to private message me if you want and I will try to give you a few more pointers as it were. There is hope by the way, you will get it under control- not cured though as it is an ongoing process. It is horrible when our lives are ruled by our VA.
PMX
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Thanks PM that’s so kind x
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Thanks for your all your replies, they were much appreciated. My GP took advice from gynae and I’ve been referred under the 2 week rule. It’s a relief to think i’ll know soon one way or another after a few years of worrying 🙂
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Great news Robin, not long to wait! 👍
JP x
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Thanks JP and thanks for giving me advice on the subject a year or so ago too. I’ve had my head in the sand since then but can ignore it no longer x
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Hi Robin,
pleased you have finally got somewhere, or on the route as it were . This may be worth having a look at? it has a couple of links near the end for lichen.
https://www.bad.org.uk/shared/get-file.ashx?itemtype=document&id=6475.
PMXX
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I’ve had my appointment but now I’m very confused. The registrar examined me first and said it was lichen sclerosis with the classic figure of 8, he then went to get the consultant gynaecologist to check if he wanted to do biopsy to check for anything sinister. The consultant looked and said it wasn’t lichen and only requested swabs. It was all extremely rushed and I didn’t get an answer as to what caused the colour change and discomfort. I came away feeling more confused and upset. How can one doctor be so so sure it is and another sure it’s not? I could carry on trying to ignore the changes but that’s hard without an explanation of their findings.
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Oh Gosh Robin,
you must be feeling so upset. It is quite common for experts to have differing opinions. They should really have taken a biopsy to check . That is the recomended protocol as far as I'm aware.
I can only suggest that you go private to a dermatologist specialising in the vulva. I can recomend Victoria Swale. https://www.thelondonclinic.co.uk/consultants/dr-victoria-swale
Or and try your local GUM / sexual health clinic. As they can diagnose and take swabs same day. Look them up in your area online and I know lots of ladies who have had sucess with ruling out and diagnosis.
The trouble is you feel so vulnerable at the time. Sounds like they had no understanding of how a woman feels after years and months of discomfort . It makes me so angry.
Dr Swale writes to your GP with recomendations etc.
I would not ignore the changes, because they more than likely will not improve on their own.
Once you know what you are dealing with you will feel more in control.
I would also if you are up to it call the clinic where you went and explain clearly that you came away more confused and concerned and was given 2 different opinions and no further diagnosis and can someone call you and clarify?
This may be worth a quick look and it states at the bottom that referal to vulval dermatologist should happen or gynae with expertise . Personally I would want a dermatologist if it is the outside skin as they are the experts in skin.
https://cks.nice.org.uk/topics/pruritus-vulvae/management/management/
If you need to PM me please do.
PMXX
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Thank you so much PM, have sent you a message xx