Living with Lichen Sclerosus

Colette shares with us her experience of an intimate condition to raise awareness and to encourage others not to suffer in silence.

"I think the Lupus and Erythromelalgia articles in recent issues of SRUK News are a great idea because I have these conditions plus Raynaud's and Lichen Sclerosus (LS) in my collection of overlapping diagnoses. My mother was diagnosed with LS ten years ago, in her early 80s. For many years ma had been certain she “just had a yeast infection". Too shy and embarrassed to reach out, ma self-treated with over the counter products and diet. Finally, in desperation, she told me everything. I convinced her to consult a gynaecologist who said: you have the most advanced and severe LS our practice has ever seen. Shortly after my mother's diagnosis, I too began to experience symptoms. My GP promptly referred me to our local Vulva Clinic where LS was diagnosed by gynaecology and dermatology consultants. The prescribed topical treatment plan helped immediately. Six years on from diagnosis in Vulva Clinic, my LS has stopped in its tracks...way before becoming as severe as my mother's. So, “Simples": I conscientiously comply with all my treatment plans and self-help techniques because they really work. Meanwhile my online LS forum helps me keep my version of LS in perspective. Since the diagnosis, gynaecology has referred me to Women Health Services (WHS) Physiotherapy for Sjogrens intimate dryness problems affecting my diethylstilbestrol (DES) internal birth defects.Thanks to all this, I very seldom have LS lesions, tears, and splits. The fusing of thickened tissues has stopped, and I am much less troubled by relentless inflammation and itching. Prescription topicals that help me most:
  • Dermovate: a very strong steroid. I use the ointment version because something in the cream makes me itch. My consultants insist: you needn't worry about steroid-thinning of tissue because you're combating thickening due to LS inflammatory process
  • Emulsiderm: an antimicrobial cutaneous emulsion/water additive. I soak for a few minutes daily. I've found a porta-bidet that fits in loos and a squeezy bottle for my handbag.
  • Replens MD: a long lasting, hormone-free, easy to use vaginal moisturiser. My GP specifies the pre-filled wands version on my repeat prescriptions form

Living with Lichen Sclerosus self help tips

For showering and bathing: I'm allergic to aqueous and barrier creams, but have discovered that my LS doesn't flare in reaction to Weleda's Calendula Shampoo & Body Wash so long as I always soak in Emulsiderm afterwards.
For intimacy: my LS doesn't play up if we use products from 'YES' the organic intimacy company. My GP gives me 'YES' Water Based Lubricant on repeat prescription.