Lichen Sclerosus

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Lichen Sclerosus
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I’m new here!

Hi, my name is bellarae91. I'm here because
I have recently been diagnosed with Scleroderma after having it for 25 years and never got answers. looking forward to chatting with new people
#MightyTogether #Scleroderma #SystemicSclerosis #LichenSclerosus #MyelinoclasticDiffuseSclerosis

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Anyone Experience with Lichen Sclerosus and HPV?

#LichenSclerosus #HPV
Hello everyone.. I got diagnosed with LS couple weeks ago after 5 years of unbearable suffering. Sadly I had a lot of stress in my personal life and then got my first Genital Wart from HPV. Since then a war has been going on. I am having several other autoimmune diseases and take suppressants. Now my skin is scabbing, wound and painful and the gential warts are growing very fast and very big. Everytime I got them lasered away I had open wounds that took weeks before they closed. The treatment for LS was steroid creme and hydration creme for the whole area. It keeps getting worse, both.

My question:
Does anyone else have the same two things?
Does anyone have personal experience and know something that helped them?

Please dont tell me about things you read, I also read. I ask for personal experience.

Thank you so much for reading

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Don't be embarrassed

I am writing this to say please don’t be embarrassed if you have a problems with your private parts, hiding it will not help you and delays in treatment can be costly, not to mention painful.  I know there seems to be a bit of a thing at the moment writing blogs about personal health issues and #MentalHealth etc, but if I am accused of jumping on the bandwagon, so be it, if it saves one person I will be happy.

I have been following who wrote a book I read and is also blogging about his embarrassing situation, he has much more wit than me!

I have now been diagnosed (yes I know a diagnosis!) with #LichenSclerosus It’s an auto immune condition which can’t be cured, but can be treated. It’s a very sore and embarrassing condition. Basically it is a very itchy skin condition on your private parts.  It’s another one for me to learn to spell!

I am waiting for prescription for strong steroid cream. I went to hospital on Wednesday, but hospital can’t issue prescription so waiting for GP to do it, dropped hospital letter into GP on Wednesday afternoon to get prescription issued.  My husband tried to chase it last night and was in a phone queue for 20 mins and then the surgery closed!!

At the moment I can’t wear trousers, tights or leggings as it is too sore. I am wearing long skirts and socks, very trendy!! I have ordered some thick over knee sock to go under the skirts, it’s getting too cold!  It’s a good job I am not known for my great dress sense!

I have to go back to hospital in 3 months to get checked again and see if cream has worked. The cream may work, but it will come back and need treating again.I am so thankful to the GP that finally examined me, but annoyed with the others who tried to guess what it was, as the condition left untreated can become cancerous.  I have been suffering for months, although it’s much worse now and 3 Drs visits failed to diagnose.  The 4th visit the GP examined me and referred me straight to hospital and I was seen in a week!  The others gave me anti-biotics for an infection, cream for thrush and tested for urine infection.  The 4th GP also took swabs for STI’s, embarrassing, but necessary.  Also given that you have to wait an average 3 weeks for an appointment with a GP, it’s been a drawn out issue, getting progressively worse.  Complicated of course by the fact that I have ME, so Dr’s assume you can’t get other conditions or that you are exaggerating or that it’s just the ME.

Interestingly it is an auto immune condition, which ME is also thought to be, so that maybe why I have it.  it could also be exacerbated by my gluten free diet these foods are said to make it worse;

~spinach, raw and cooked,

~canned pineapple

~many boxed cereals

~dried fruits


~rice bran

~bran flakes

~soy flour

~brown rice flour


~potatoes in all forms, including baked, French fries, and potato chips

~buckwheat groats



~cocoa powder, and hot chocolate

~nut products, such as peanut butter

I can’t cut anything else from my diet, already being gluten free, dairy free, low sugar, fish free, yeast free, it’s a nightmare.  I eat most of the things on the list, and almonds, rice flour and potatoes are staples of a gluten free diet.

The hospital were lovely, it makes a change. And I got to see my bits on a screen (lovely), but once you have had IVF treatment, nothing bothers you!

Hoping my prescription is ready today, I can’t face waiting until after the weekend. I have just been to Drs surgery as Rob couldn’t get through on phone. Arrived and no one on reception. Then receptionist said hospital letter not looked at yet and asked if I needed it urgently, I said yes. She marked it as urgent, but says it won’t be looked at before 2.30. I asked if it will be ready today, she said she cannot guarantee it and if it is going to be ready it will be done by 4.30!!!  It’s horrid weather, it’s wet, windy and cold. Bin men dumped bins in front of my drive whilst I was out so couldn’t get back in without moving them. I have just heard at least one of them blow over!  I am sick of using my little energy on chasing people and needlessly going out etc and it’s not going to help me feel any better.  I am now off to bed!

So now I have another embarrassing, invisible condition to add to my others!! Lucky me!

1 comment

There's more?!  #PosturalOrthostaticTachycardiaSyndrome

I was diagnosed with something new yesterday. I'm a 42 year old single mother of two kids, an avid creative, and my avocation is in science education. I work as a science curriculum and assessment specialist at my state's education agency. We are a family of neurodiversity. My 12-year-old son has #ADHD and is on the #Autism spectrum, #AspergersSyndrome, and my 10-year-old daughter also has #ADHD and likely depression. I have chronic #Migraine, #PolycysticOvarySyndrome, #HashimotosThyroiditis, #LichenSclerosus, #Depression, #AttentionDeficitHyperactivityDisorder , #IronDeficiencyAnemia, and have previously suffered from #PTSD and #WolffParkinsonWhiteSyndrome.

Now, I am #LivingWithPOTS.  

Yeah, it's a lot in one person (and family), and it's still difficult to wrap my head around.  I keep coming back to that paragraph to add something I'd forgotten.

Unlike most of my other conditions, I'm an outlier in terms of time to POTS diagnosis.  Mine took exactly 4 months.  I developed POTS from the flu shot I received last September. Yeah, that actually happens, my doctor confirmed it.  I guess I'm "lucky" for that?  I haven't decided yet.


So, like. The gender options at sign-up are "Male", "Female" and "Other". Which is so much better than Male and Female, but the fact that I have to feel grateful for "Other" is frustrating as balls.

But so often in the medical community, the Other isn't even an option. I fill out forms at the doctor's office, and they say I'm Female, because I'm there for #LichenSclerosus , or #MenstrualCycle issues, and it really sets off my #GenderDysphoria . And this is why it's been 3 years since I've seen a gynecologist, and this is why it took me over a year to get the LS diagnosis.

Because I am so anxious about having to misgender myself to seek treatment, I would rather go on being sick than having to put myself in that situation.

#Anxiety #Diagnosis #Doctors