When my son was born, the nurses gave me ‘popsicle pads’ – sanitary napkins with a bit of water added to them and then put in the freezer. Let me tell you, those pads were pure heaven for relieving the pain of childbirth. I used them again after my daughter was born (she was 9 1/2 lbs!). That time, I added calendula water to the pads to speed healing.
Pushing a 9 1/2 lb person out of your body creates substantial pain, inflammation, tearing and burning. But at least you get this adorable little human to take home with you, and once you heal, the pain does not return until you have another little human.
While comparing the discomfort of LS to childbirth might seem extreme, some women with LS experience excruciating pain that returns again and again. Other women, myself included, are fortunate to experience mild to moderate symptoms.
So, what are the symptoms of lichen sclerosus?
This is where shit gets real … and a bit complex.
The Mayo Clinic (1) does a good job of identifying the main symptoms of LS:
- Redness
- Itching (pruritus), which can be severe
- Discomfort or pain
- Smooth white patches on your skin
- Blotchy, wrinkled patches
- Tearing or bleeding
- In severe cases, bleeding, blistering or ulcerated sores
- Painful sex
The challenge here is that each person experiences LS differently. I suspect there can also be other issues happening alongside LS that may not be due to LS.
There was a poll posted in one of the online LS communities asking about the top symptoms experienced by its members. Over 270 women responded.
These were the top 10 symptoms:
- Itch
- Burning sensation
- Redness
- White patches
- Fusing (architectural changes)
- Paper cut-like sores
- Inflammation
- Painful sex
- Shooting nerve pain
- Swelling
The list was actually 25 items long and included other symptoms such as blood blisters, frequent urination and throbbing pain.
What are the symptoms of lichen sclerosus in children?
It saddens me to think that little ones are dealing with LS and how challenging this can be for a parent to figure out.
The symptom list for children varies slightly from the list above. According to the Royal Children’s Hospital Melbourne (2), these are the main symptoms of LS in children:
- Itchiness
- Constipation (due to painful cracks in the skin around the anus)
- Pain when urinating
- Red and inflamed skin at the beginning, that later looks like white, shiny, wrinkled or thickened patches
How do you know if it’s lichen sclerosus?
There are other causes of vulvar itching. This is the complex part. Symptoms may or may not be due to LS. There may be no LS involved at all, or there may be LS alongside non-LS-related issues. A specialist will diagnose lichen sclerosus from a biopsy or a visual inspection.
If you know of anyone with LS or mystery vulvar symptoms, please share this blog series with them. If you are experiencing the above symptoms, talk to your doctor and keep joining me here.
Remember, each person is unique. You may have been diagnosed with LS and have few or none of the symptoms above. Or you might be already pouring water onto those pads you’re prepping for the freezer!
Much love,
Stephanie
Read the next post in the series: What causes lichen sclerosus?
Pick up your copy of the most recently published book on LS. Everything covered in this blog series and more! Get it now from Amazon worldwide.
**This blog is meant to inform, not diagnose or treat specific health conditions. It is not a substitute for professional medical advice, diagnosis and treatment. Always consult your doctor or health care practitioner.
1 https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/symptoms-causes/syc-20374448
2 https://www.rch.org.au/kidsinfo/fact_sheets/Lichen_sclerosus/
Stephanie Hrehirchuk - Author 
Thank you for this! I am suffering alone with this (except for my beloved poor husband having to put up with me). Went to a young gyn since my Dr retired back in 2018…severe pain, itching…she made a face during the exam, then called in her fellow drs to stare at my bottom, gave me a $100 antibacterial cream and I felt humiliated. It flares up often and I silently suffer. I am in pain with raw skin, just urinating feels like fire. I don’t know what to do, how do I find a Dr? I may have to fly somewhere? I’m in Florida and feel hopeless I’m sure I have this. Menopausal and 70
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Thank you for sharing your story. I hear you. And I’m here for you. I know the frustration of doctors not listening or understanding. You definitely need a doctor who is familiar with LS and vulvar issues. Many women who find burning with urination use a peri bottle (small squeeze bottle) filled with water to rinse your vulva after each time you pee. It keeps the urine from causing pain. Then pat dry with toilet paper and apply a barrier cream or oil. I’m not a doctor and it’s important you get one on your side for your treatment.
Some of the things we ladies use to alleviate pain/burning/rawness is pure aloe vera gel or even something simple like a bit of pure coconut oil or olive oil after you pat dry. I’m not sure where you are in Florida, but if you do a bit of internet searching, phoning around, you can definitely find a specialist to work with you there. You can ask your doctor for a referral or find your own clinic. Remember to ask them specifically to look into lichen sclerosus.
Here are a few places I found: https://www.toplinemd.com/the-center-for-gynecology-and-restorative-medicine/services/lichen-sclerosus/
https://ufhealth.org/uf-health-womens-center/vulvar-disease https://my.clevelandclinic.org/florida/departments/obgyn-womens-health/depts
https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/doctors-departments/ddc-20374453
All the best to you! Let me know how you get on.
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