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[Joaniepat]

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

[Robin]

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  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.

[Joaniepat]

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  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.

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

[racjen]

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.

[Robin]

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 🤞🏻

[CLKD]

Robin - ring the surgery on Monday and ask for the referral, why wait? 

[Robin]

Would just rather wait till my nerves have recovered from this appointment first  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

[pepperminty]

 FYI,

Doctor Victoria Swale is and excellent dermatologist specialising in the Vulva.

Peppermintyxx

[Robin]

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

[pepperminty]

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

[Robin]

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

[pepperminty]

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

[Robin]

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

[Loo53]

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.

[pepperminty]

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