Vulvovaginal lichen planus

[sobs1962]

Anyone have this condition,it's truly horrendous but I haven't had a definitive diagnosis due to constantly cancelled appointments with dermatologist because of covid. It's intensely itchy and causes skin to crack and bleed and have also had pink discharge and a tiny bit of blood spotting which is worrying as I am post menopausal. I know it's an autoimmune condition and as I have Hashimotos thyroiditis, it's no surprise I now have yet another one. Any advice or benefit of experience would be greatly appreciated.

[Carlettejaque]

Rinse the urin off your skin every time you use the loo. Keep a small jug in your bathroom. Only use warm water and you must do this every single time, don't miss a rinse. Sit well back on the toilet when you rinse and dab dry with a soft tissue not toilet paper.

[sobs1962 in reply to Carlettejaque]

Thanks for that,will try anything to try to get some relief and should also mention that I am using YES vaginal moisturiser as have vaginal atrophy. Could the VM be making things worse?

[Carlettejaque in reply to sobs1962]

Yes, it could. Don't use anything for a while. Just try the warm water rinse. It takes about two weeks before improvement but keep doing it. If you go out and need the loo take a little flask or small bottle of water with you. It will be cold water but better than nothing. I always carry a bottle of water with me. I am now symptom free. Just keep doing it.

[sobs1962 in reply to Carlettejaque]

Thanks so much for that tip, stopped using the VM for a few days but as it made the vaginal atrophy worse had to start using it again as my skin is so dry it cracks with very little contact and was in more pain but since I have been rinsing there is very little irritation even after restarting the VM. I have also bought myself some good quality 100% cotton briefs and hopefully a combination of all 3 will keep me reasonably comfortable. So grateful for your tip and it has definitely made a big difference.

[Carlettejaque in reply to sobs1962]

I'm so glad my tip helped you. Yes, I only wear white cotton briefs and at the end of a wash cycle I give them an extra quick wash with no washing tabs or powder just to make sure they are well rinsed. I cant use any lubricated medjcation other than a stetoid ointment Dermovate. That is really good. Good luck.

[Maxim7]

Yes don’t scratch. Use cetraben to cover the skin after going for a pee but wash off first.Also don’t presume it’s LP LS tends to be the one that causes the skin to crack. The GO can prescribe dermovate whilst you wait to see a GP as this is what the dermatologist uses as a first line. Don’t use anything perfume in the bath water and if you bath limit it to about 10mins warm not hot. If you shower the same don’t use anything perfumed. Ensure toilet paper and any panty liners are none perfumed. Underwear not tight and ensure cotton they recommend white but I wear men’s boxers and that’s fine.

It is not always related to thyroid but sometimes occurs in relation to stress but they will always say they don’t know.

If you are diagnosed with LP there is a UK support site and same with LS.

Usually erosive LP will bleed however LP does spot.

So leave it wash it off when pee use a barrier on the vulva like cetraben ointment this helps the skin to start and calm down.

[sobs1962 in reply to Maxim7]

Thanks for replying unfortunately I find it impossible not to scratch as it's insanely itchy and I know I shouldn't. I have been prescribed emollients to help with vaginal atrophy with no success and am using YES vaginal moisturiser which I put on outside and inside my vagina at night before I go to bed. Could this be making things worse?

[Maxim7 in reply to sobs1962]

In short YES I found at the worst that product irritated so stop using it until the flare is under control. GP and dermatologist both prescribe the same emollients but I found cream annoyed me ointment didn’t . I changed from hydromol which made me worse to cetraben ointment and it worked. Well the worst is you are destroying the skin and not giving it chance to heal which will cause it to infect and you don’t won’t that to progress internally which it can.

Don’t scratch and when applying any cream put it in the fridge first the coldness dissipates the itch.

The dermovate which the GP could have prescribed helps with the itch but takes about 3wks.

At worst put a few cubes of ice in a flannel to cool it down.

[sobs1962 in reply to Maxim7]

Thanks for that. Unfortunately if I stop using the VM I get so dry it causes a burning sensation and makes the pain worse and my skin is more likely to split and bleed. Honestly I don't know what to do for the best. I have been using the VM daily but could try cutting down to every second day and I have yellow foul smelling discharge. I am going to ring doctor on Tuesday regarding all this as have had lower back pain and have recently lost weight and extremely worried it might be cervical cancer and just hope they don't fob me off due to covid.

[Maxim7 in reply to sobs1962]

That’s what the cetraben is for it keeps the skin moist without irritating it and allows the skin to form a protective top layer which is what you need.

Yes you do need to chat with the GP they can’t fob you off if need be ring 111 and they will book an emergency appointment if needed in A&E.

Think positive as it could simply be an infection.

Hope all goes well.

[alliebc]

I recommend Calendula ointment, if pure, made with just cold pressed organic olive oil and beeswax as a binding agent . It can go inside and out and heals all sorts of skin conditions. It works great for me for LP/LS and doesn’t thin the skin like the prescribed steroid ointment. Always wash after urinating, get a bidet spray attachment for your toilet.

[sobs1962 in reply to alliebc]

Thanks for your reply, can you recommend a brand to try?

[alliebc]

It sounds like you need to get an appointment and deal with the greater issue of weight loss and back pain first. I was referred to a gynaecologist, prescribed ClobetasoI steroid cream. A biopsy showed both Lichen Planus and Schlerosis. I live in Canada so I ordered the calendula from the maker, Winnipeg herbalist rivercityherbals.com or cheaper through an online Health Store yeswellness.com. I chose river city ointment because it is the most pure form of calendula salve I could find. It healed the bleeding etc. If you know a herbalist, you can buy the organic calendula oil online and they could make it up. Avoid any perfume or additive. Unfortunately LS LP is a chronic autoimmune condition but improves so can be managed. Check out groups.io for the LS forum and join up for great advice too.

[sobs1962 in reply to alliebc]

Thanks for that,I actually had a biopsy done in February 2019 but the letter I got said it was "reassuring" whatever that means but have had no definitive diagnosis and last saw dermatologist in March 2020 who prescribed me clobetasol and it did make a difference but don't want to be using potent hydrocortisone creams because they thin the skin. I will try to get some calendula and try it. Have been using jug of warm water after toilet use and am using a soap substitute, all of which are helping and I'm nowhere near as itchy as I was. Due to see dermatologist on February 8th, providing the appointment goes ahead due to covid.

[Maxim7 in reply to sobs1962]

Reassuring usually means no deep seated cells that are concerning.

[sobs1962 in reply to Maxim7]

I suppose that should give me peace of mind, the only thing is that biopsy gave me a haematoma ( big blood clot plus massive swelling and had to have an operation to drain it and they removed a mole that was in my groin at the same time. I feel like the whole biopsy thing was a bit botched and I have been suffering with dryness,intense itching and pain through scratching, which I know I shouldn't do but it's the most itchiest thing I've ever experienced. Have an appointment to see dermatologist on February 8th and am seeing a gynaecologist next week as have had a TVU(transvaginal ultrasound) to rule out possible ovarian cancer as have had some symptoms relating to it. As you can tell everything is going really well (NOT!!!) Hopefully no cancer diagnosis and my vulvovaginal health will improve.

[Emily50]

Bless you, I hope your situation has improved since you wrote your post . X

[sobs1962 in reply to Emily50]

Went to see dermatologist and he has diagnosed as " likely contact dermatitis " which gives the impression that he doesn't actually know what it is and he talked about doing another biopsy, but after the botch job of the first one, I don't want to put myself through all that again. Have an appointment in November at the contact dermatitis investigation unit at local hospital and we'll just have to see what they say.

[Emily50]

I wish you all the best. I hope you find your next app helpful.I have LP on my gums (don’t improve with hydrocortisone ointment), Vulva (some improvement with Dermavate) and a few on my leg. I have had appointments at 3 different hospitals, dental, gynecology (haven’t received appointment yet) and dermatology. I am hoping my condition can be dealt with holistically, my dental consultant is trying to arrange that. I would like to understand why my immune system is attacking my body.

[sobs1962 in reply to Emily50]

Well, I believe from the research, I've done that the root cause is inflammation and it is triggered, in my case, by chronic stress and by chronic I mean since childhood as I also have diagnoses of major depressive disorder, generalised anxiety disorder and borderline personality disorder and if you're brain is on high alert( fight or flight mode) all the time, it somehow triggers your immune system to be the same. As your brain sees most things as the enemy, then eventually, so does your immune system. I don't know if that makes any sense to you, but it does to me.

[Emily50]

Absolutely does make sense. I am sorry you are living with multiple issues. Thank you for sharing them with me and this group. I too have a heightened awareness of potential danger which stems from childhood trauma. I can pinpoint the start of my LP to a particularly stressfully episode 5 years ago. My consultant said she has noticed many LP patients reporting the same. I am trialing turmeric as it is said to reduce inflammation. I started taking it months ago then stopped, not sure why. I will try for a month to see if it helps, I will let you know. I also know I need to pay more attention to managing my anxiety/stress. Using tools such as EFT, Mindfulness and walking outdoors preferably close to nature. I send you my very best wishes X

[sobs1962 in reply to Emily50]

Thanks for your support, I have tried using ashwagandha for the last year or so and it has,helped my stress levels and anxiety, but think I should take a break now and maybe try some else and am considering trying berberine to help my endocrine system as apparently it is considered "the metabolic master switch", therefore as it's an adaptogen, and completely natural, it may help to boost and regulate my metabolism as well as help to keep blood sugar, blood pressure and cholesterol at healthier levels. Keep me updated on your turmeric trial, as have also considered using this as has anti-fungal properties too and may help with my fungal toenails and maybe my seborrhoeic dermatitis. I've got to a stage at 59 where,I'd rather put something natural into my body, than man-made drugs that can have some horrendous side effects.

[Emily50]

I too prefer natural remedies. It is trial and error. X

[sobs1962 in reply to Emily50]

The way I look at it is that plant-based remedies have been around for thousands of years, and the Asians have been using them to very good effect, so worth trying them, like you say trial and error.

[Thickskined]

it sounds like torture. Maybe the pharmacy might be able to give you something over the counter for the itching, because if ye can sooth the itching it would make it easier while you're waiting to see a doc, and while create a space for the cracks/cuts to heal, sound awful hope things heal, bless ye💚🤗🥰 sending love

[Maxim7]

Ahhhh menopause as well. There is a dermatologist in Birmingham which is part of QE trusts that specialises in LP. Elecon is good and won’t irritate or shouldn’t and will calm it down. It takes months to get it into calm and then you’ll have flares but will learn to know what triggers. There was also a LP bod at Nottingham hospital. I maybe if feasible to have a private consultation which is what I did after getting wrong diagnosis at first.

[Maxim7]

Whatever you do don’t continue to mix and max etc. if it is LP it needs to come into control first by continuity of use swapping and changing will irritate more. Google LP specialists and get a firm diagnosis once that’s done and you have continual routine of what to use it will come into control. Having natural May actually irritate the area. One that’s been said and I tried and it did help orally was…turmeric. Sadly trial and error is like rubbing salt into a scratch…..

[Beattie-75]

So sorry to hear this Sobs, I have had it for some years and do find Dermovate seems to control it. I try to use as little as possible and the rest of the time use a good moisturiser. I too am waiting for an appointment for a check but am told cannot even offer me a date until after 10th Feb!!!!!! Happy Christmas x