Lichen Planus VLP: Hi l have vulva and vaginal... - MY SKIN

MY SKIN

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Lichen Planus VLP

donna profile image
5 Replies

Hi l have vulva and vaginal Lichen planus added to my SLE and many autoimmune stuff. Have seen a vulval dermatologist and also had a laparoscopy 2 weeks ago with the uro neuro gynae,,have dermovate for vulva nothing for vagina..( sorry to be so up front) . Does any one else here suffer with this ? They think I also have in my throat an ear! Waiting for another ENT referral.( never a dull moment!) my toe nails have dropped off ...and my head is itchy and picking bits off! Doesn't help with the ever decreasing hair!

There doesn't seem to be a Lichen planus forum here on health unlocked?

Having a bad SLE flare at the moment..bad head aches ( also have APS/ Hughes , (can't tolerate the aspirin) )would my Rheumy want to know about my new auto stuff ...? Could he help with this and flare? GP is at a loss and dithering..gave me prednisalone ( have had lots before) but asked me to rest for another few days to see if things improve ,before we will decide wether to go on a course..I saw him yesterday as I had a lump come up on my annus ..outside ..says its a thrombotic haemaroid..now have lidocaine/ hydrocortisone..defiantly some thing going on,,

Had the LP going on for a year...

All the lids of many boxes ( different auto stuff) are all flung open together this time ( can usually cope with a couple) but seem quite overwhelmed at the moment and various different pains! And the down side is l react to all the pain meds ..so not taking any ..feel sure this flare is due to the anaesthetic and morphine ( that I asked not to be given) I had with my laparoscopy..!

Any advice? X

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donna
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Shell567 profile image
Shell567

Poor you, Donna. SLE by itself is enough to deal with!

There is a free Patient.co.uk LP forum that seems to be very active at the moment. patient.co.uk/forums/discus...

There is also a UK Lichen Planus (UKLP) forum, but you have to pay £5 to register. uklp.org.uk/

The UKLP does provide a free patient information leaflet that you can download. It discusses most aspects of LP, including genital LP. There are a few other free downloads too. uklp.org.uk/downloads

DermNet NZ lists a number of treatments for LP including hydroxychloroquine (also a treatment for SLE), and tacrolimus & pimecrolimus cream for oral or genital LP. dermnetnz.org/scaly/lichen-...

It sounds as if you may need to be seen by a dermatologist with good knowledge of LP. I have Sweet's syndrome not LP, but I hope that someone with LP will be able to offer you further advice.

Take care,

Shell.

donna profile image
donna in reply to Shell567

Hello shell

Thank you for responding to my post ,and with all the information you have given me ,there is plenty to check out and read! I wasn't aware of the patient .uk forum nor the Derm net ..so I will pay a visit !

I'm sorry that you have Sweets a Syndrome another nasty thing to have ,I hope you have good quality of care and are able to manage your symptoms ..

With best wishes

Shell567 profile image
Shell567 in reply to donna

Thanks Donna! Fortunately my Sweet's syndrome has settled down over the years. It's much less problematic than it used to be. All the best. x

lovesradio profile image
lovesradio

Donna good luck with getting support as described by Shell567, you need and deserve some proper support and help

donna profile image
donna in reply to lovesradio

Hi Lovesradio,

Thank you for leaving your kind comment ..I will check out shells suggested websites and have a good read..need a good knowledge of what's going on!

Best wishes .

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