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[Chattenoire]

Hello! Someone suggested I joined this forum because I was recently diagnosed with LS. However, I think it's likely to be misdiagnosed.

I apologise for the TMI in advance. I'm 39 yo, almost 40 with no real peroenopause symptoms apart from my periods varying a bit more (1-2 days).

It all started 2 months ago when coincidentally I started a new job. My butthole started itching a bit more than usual but it's not usual for me to have an itchy butt on every now and then.  One day I do remember I scratched and scratched because it gave me instant gratification. (Remember the stress I mentioned?) At the same time I noticed my ears started to become flakey and crusty but didn't think much of it.

About 5 weeks ago I had the fantastic idea of removing my bikini line hair with a cream, a few weeks later it started itching like the new hair and was scratching the opposite side of the labia, this was for the most part external and around my clitoris, which at that point was a bit enlarged but I also "overused" it at times.

About a week ago it reached critical point and started to apply all sorts of creams with some relief pit of them but I thought I might as well get it checked.

By now my poor buttcheeks were super raw and red and even oozed so much fluid that I wet my pants.

My ear rash spread toy upper back and nowy neck and face .

On Thursday I was told that ALL of it was LS.  My cousin (a dermatologist) that has only seen photos of my neck and ears says it looks like standard eczema. I have NO white patches and the GP didn't take a sample.

It's worth a second opinion, right?

[Chattenoire]

Forgot to mention I do a lot of spinning and sweat A LOT everywhere including my crutch

[CLKD]

Certainly is worth another opinion - do put 'lichen sclerosis' into the Forum search box: make notes ;-)   This condition requires the eyes of a Consultant au fait with symptoms!

Nowt is TMI on here we discuss everything, even menopause ;-)


Anything with 'isis' is due to inflammation of some kind, i.e. appendicitisis, tonsillitis ........ [pity I can't spell  ]

As oestrogen levels drop the body may become dry: inside and out; deep in the ears, nostrils, eyes, vagina, anus, skin ......... bladder conditions may become worse = vaginal atrophy.  Do read the 'bladder issues' thread and any on VA.  VA can be eased by appropriate treatment and mimics repeated urine infection-type symptoms really, really well.

Anusol is what is recommended by GPs for itchy bottoms.  Savlon is my go-to, less embarrassing to ask for  .

Ask your GP for an appropriate referral to a dermatologist with knowledge of LS.  U may find from your local Health Authority web-sites if there is one at your Hospital. 

[Suziemc]

There is a fab FB group called "Lichen Sclerosus - UK Support Group for Women" which is well worth joining. As well as good, solid, non-judgemental support from fellow sufferers there is a plethora of information available.

A biopsy isn't always needed for diagnosis, LS can be recognised visually by knowledgeable GPs, mine was. It is, of course, possible that you have been misdiagnosed and a second opinion might put your mind at rest one way or the other.

What treatment did the GP suggest? Hopefully steroid cream for your vulval and anal area.

Suzie

[Chattenoire]

@ CLKD Thank you! You have been very kind and thoughtful and certainly what you mention resonates with my symptoms. Especially now that you mention it, it feels at time like a UTI even the tenderness in the lower abdomen!

I was just shocked (after I started reading about LS) that the GP diagnosed it without a differential diagnosis and/or a biopsy! Especially when it's not a textbook case.

@Suziemc I've joined that one in fact! Although I had the feeling that they didn't quite understand why I wouldn't believe a GP. My experience with GPs has been atrocious! They misdiagnosed two major things in the past and they normally diagnose the common denominator of symptoms. Before I saw this GP, I did fill a form online with my symptoms.i then was asked by dermatology to send photos. I believe they liaised with the surgery that a swab was needed (as I received a text saying that), but because they were no appointments until July with the GP that sent that message I just wen and saw whoever was available.
The steroid cream is working wonders, but my neck and face have got much, much worse to the extent that I can feel my eye pulsating at times. (The rash has reached around my eye).

[CLKD]

Let us know how you get on!   I would never be sending photos !  I suspect that the Dermatology Dept wanted swabs ready for the appt., were you actually given an appt as July isn't long away. 

Would an oral antihistamine tablet plus a good hand cream on all affected flaky areas be worth a try?  We use 'vaseline' in the yellow bottle with success for everything other than my vagina 

[Chattenoire]

No I was not given an appointment (the July appointment was for a specific GP).

I'm still waiting for a referral to dermatology for bleeding nipples! (That one was done a year ago :/ )

My ears are responding really well to vaseline. I'm just a bit hesitant to apply it around my eye maybe I'll have to!

[CLKD]

It won't hurt to apply anywhere - Grandma swore by zinc and caster oil, green I think it was.  We use 'nivea', Vaseline hand cream in the yellow bottle [which says not to use on the face  ], 'savlon' ......... vaseline can be a bit sticky though 

[Chattenoire]

Just wanted to report that I had the best night in probably weeks!! No itch, no stinging!

Plus my buttcheeks are starting to flake (I see that as a good thing!)

Considering I feel normal again within 48hrs does make me think I didn't need such strong creams. Not complaining but corticosteroids are to be used lightly.

[CLKD]

When I had radiation therapy after breast surgery I was told to use no more than a teaspoon full once a day on the affected area!

[Chattenoire]

Update: New GP said it was just  stress related dry skin and that I need to stop applying Dermovate ASAP and only use vaseline . She said that the original diagnosis was too severe, and there was no way I would have recovered so quickly.

[Suziemc]

Wow, well done on getting the second opinion.

Keep an eye on your vulval area, try and get into a routine of doing a visual check every week or so, just to make there are no further changes over the coming weeks/months.  We really should be encouraged to check our vulvas just as regularly as checking our breasts.