24 responses to “Help – the steroids are not working – Helping women with refractory vulvar lichen sclerosus”

  1. Excellent, well written article.

  2. Very interesting and informative article with practical approach.

  3. Helpful review of the subject

  4. Agree with all of the above comments. Table 1 with instructions to patients will be very helpful. I would like to make copies and hand them out to patients

  5. Please download the patient education handout for lichen sclerosus at bcvulvarhealth.ca under health information – it has this table and other instructions for patients.

  6. thank you

  7. Would the recommendations be the same for pediatric patients presenting with LS?

  8. Yes. Treatment of acute LS is similar. Maintenance therapy is recommended till at least puberty. Potency of steroid can be reduced.
    Here is good review of Pediatric Lichen sclerosus.

  9. Any suggestions for managing fissures and tears? (Other than the obvious, preventing them by using steroid as directed and avoiding constipation).
    Suggestions as to how to keep steroid ointment from migrating to normal skin?

  10. A patient on mine with specialist confirmed lichen sclerosis, learned that her sister had the same condition. the sister had consulted a naturopath who recommended discontinuing all dairy products. This resolved all her symptoms. My patient followed the same advice and also obtained resolution of her symptoms. Every now and then she slips up and has some dairy products and the itch will return for a short while. Milk allergy?

  11. Regarding recurrent fissures and tears – assuming woman is adherent to topical steroid therapy
    1 Review skin care routine (eliminate chemical and physical irritants that could be drying skin; for example soap and pamtyliners).
    2 Suggest moisturizing skin daily or a soak and seal” routine. Sit in bath, gently pat skin dry then use a barrier (zinc or petroleum base) on the skin.
    3 Consider adding local estrogen replacement for post-menopausal women.
    4 Non-healing cuts should be biopsies.
    Applied in a thin layer steroid should not migrate but wearing underwear after application should prevent spread to thighs

  12. High potency steroids such as clobetasone may be contraindicated if the patient also has a chronic infection such as Lyme disease, syphilis, leishmaniasis, tuberculosis, etc–the same things that are a caution for any use of a potent immunosuppressant. Steroids have been associated with a return of Bells palsy and hemi-facial paralysis in Lyme patients, for example.

  13. Will lichen sclerosis cause infection in a hip replacement during surgery

  14. Had LS for 25 years with ulcers, had about 6 ops to remove ulcers and test if they were malignant so far ok, but now very little skin left on vulva, had a kind of acid treatment from dermatologist left with severe burns red skin that is not healing and now more itchy and painful.

  15. I have lichen sclerosis and Recurring colorectal Cancer Mets. The first chemo regime I had some patches which disappeared during chemo. The second chemo Regime, I had a diagnosis and was under the care of a dermatologist during chemo and the white skin disappeared, and the skin came off and it was very painful. This third time On chemo the patches have begun to recede. Some patches have disappeared forever and others slowly return over a couple of years.

  16. I have chronic inflammation on my vulva. Had biopsy and it’s not lichen sclerosis or lichen planus. I was prescribed to use Clobetasol prior to my biopsy and used it for 10 consecutive days, 2x a day. It worsened the inflammation, it looked like lesion so I stopped it. Then started using Vaseline and improved. Couple of weeks after my biopsy, it started to flare up again and Vaseline is not doing anything. I was prescribed to use Lyderm for 3 mos. as my Gynecologist said it’s milder than Clobetasol. I’ve been using it for 5 days, (applied only at night) now but the inflammation is getting worse similar to Clobetasol effect. Should I continue to use it as prescribed?

  17. What do you mean when you say “emollient” on alternative days. Thanks. (Non doctor here).

  18. My daughter was diagnosed with LS when she was 7 she is now 11. I try to follow all guidelines as best I can but do tend to loosen when she isn’t mentioning the condition as I don’t want to remind her and maybe cause a placebo effect of her thinking about it and then starting it up again but when I do loosen it does tend to flare up again makes me feel so sad that she may have to have this awful condition and rigorous routine her whole life, and so worried of the things she faces when she gets older. Any tips or info anyone can give which has helped there’s would be so helpful anything, diet, natural remedies just need some help as I struggle to myself as no one seems to have heard of or realise what this condition is, and I can’t really go around telling everyone as it is my daughters condition and I know she wouldn’t really want me talking to people about it!

  19. I had a year plus of lichens sclerosis and it was a nightmare I was treated by a dermatologist with steroid cream ,this didn’t seem to help .Then after this horrid year I read a review about a patient who had stopped steroid treatment and had started using Vaseline.I am now a year on this therapy,I wash the area every morning withplain warm water dry carefully and then apply Vaseline in the same area ,also to the inside of the lips of the vulva.It has given me my life back it’s definitely worth a try.I have recommended this to several friends who have the same or similar conditions and every single one has shown a complete or huge improvement in their conditions.I just can’t keep this information to myself because I live in dread of the condition returning so I pass on this to hopefully help others.

  20. It is my belief that for those patients who do respond to ultra potent topical steroids but still have some residual problems such as painful sex or frequent flare ups, that an attempt at complete resolution (not just remission) should be attempted using tacrolimus 0.1% ointment.

  21. Why does clobetasol have 2 alcohols in it?It is very irritating. I mix it with Egyptian Magic helps a little

  22. I just wanted to say THANK YOU THANK YOU THANK YOU, from the bottom of my heart! I am not a practitioner, but a woman who has had severe vulvar itch for the past two years. It kept me awake most nights and directed my days. I tried all the things, at first thinking it must be yeast, or vulvar varicose veins when yeast treatments didn’t work. I couldn’t find a doctor locally who could help me, so I was considering flying out to see a specialist. I have other autoimmune diseases, so I suspected LS, but I wasn’t sure. I finally came across this article, and I read it over and over. I have now been on this protocol for a month, and I have been better since week 3! I will continue to use the twice a week instructions for as long as I need to.
    THANK YOU for putting your knowledge out there and changing my life. This mom of 7 is so grateful to not have to live my life around how itchy I am on a particular day. Have I said thank you yet? THANK YOU! And many blessings to you.

  23. Which emollient is recommended between clobetasol twice weekly treatments. I use vaseline but wondered if you have another suggestion to try (I have had recurring LS for many years, properly diagnosed (clinical and biopsy) about 7 or 8 years ago. I am not getting very long relief between flare ups (when my routine is as suggested in your article). Also, at last appointment, immunosuppressant meds were discussed as a possibility to get a longer relief from symptoms but this scares me. I am 73 and worried that I will be open to many flues and other things if my immune system is lowered.

  24. I have the same question as Sonia.

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