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Everything you need to know if you’ve just been diagnosed with Lichen Sclerosis

As a bearer of several autoimmune diseases I am intimately familiar with the storm of emotions a person might be experiencing when diagnosed with a new chronic condition. Some are better manageable than others, but with Lichen Sclerosis, the possible prognosis, incurability, and lack of effective conventional treatment options often lead to despair, fear, panic, and frustration.

These are completely natural reactions to such news, especially when there is a sore lack of any reliable information and a person is left in the dark as to what to expect.

Personally, what I find most depressing is the years of discomfort, misdiagnoses, and dismissals that often lead up to the correct diagnosis being made, and that sometimes, people have to self-diagnose as doctors are of not much help.

But, as is true with everything, this is just the first phase of losing something we took for granted and it will pass. Life goes on and as you come to terms with your new diagnosis, you will learn more about this condition and will find treatment options that work for you. Maybe you will need to adjust some daily routines. It’s possible that you will need to make some major changes in your life, but keep this in mind – everything is figureoutable and this phase doesn’t last forever!

The thing is, doctors cannot tell you what they do not know, which is…

…there’s many alternatives people have found helpful:

• borax soaks and sometimes borax ingesting has often proven useful as a first line of defense
• dietary adjustments and addressing food intolerances and sensitivities
• functional and naturopathic medicine
• working with a homeopath
• addressing hidden causes of stress – this is important. So important in fact, that I should have placed it first!

But here’s what your doctor should have told you, and likely didn’t

They should have educated you what LS is:

• an autoimmune, endocrine and nervous system disorder
• it presents with white and/or dark patches predominantly on the vulva and perianal area but can be also elsewhere on the body
• thinning and/or thickening of the skin
• itching, burning, swelling, rawness, tearing, crawling, intense pain and possibly other sensations often negatively affecting not only sexuality but also common daily activities like sitting or walking
• like all autoimmune disorders, it affects predominantly women – about 90%
• in some cases, it leads to shrinking, fusing and loss of vulvar architecture, but not in all cases
• it is often just one part of a cluster of autoimmune conditions
• often there is pain and discomfort experienced inside of the vagina too
• there might be other vulvovaginal conditions present – pelvic floor disorder, vaginismus, vulvodynia, vulvar vestibulitis, and others

What they likely told you is

• that this is incurable and will possibly lead to vulvar cancer
• that it needs to be managed by use of steroid creams, even if those make you worse, don’t bring relief, or when you don’t show any symptoms
• that the steroid creams act only locally and side effects appearing on different sites of the body couldn’t possibly be related
• that you need to be regularly evaluated for malignancy since you are at a higher risk for squamous cell carcinoma
• that a biopsy is necessary to confirm the diagnosis

On the contrary, clinical research and experience say

• Lichen sclerosus can go into spontaneous remission, sometimes lasting for a life-time
• the clinical recommendation for (even short-term) use of topical steroids to prevent architectural damage and reverse histologic changes are based on evidence of inconsistent or limited quality
• steroidal creams suppress the immune system which is, in fact, one with the endocrine and nervous systems. There is no way they could act only locally. They affect the very governing system of the whole body.
• there is no evidence that malignancy evaluations lower the risk of cancer or cancer death
• according to current diagnostic guidelines a biopsy isn’t necessary to confirm the diagnosis
• biopsy is an invasive procedure which can lead to complications
• LS can lie dormant for long periods of time, and it can manifest for short or long periods of time
• it can appear at any age but often occurs when there are any hormonal changes

Based on all of the above, informed consent is rarely part of the equation. And I’m a big advocate for informed consent.

Due to the limited treatment options and lack of understanding of the complexities of this condition in the conventional medical profession, you will probably need to educate yourself and look for alternatives.

Here’s an action plan to get you started:

1. Begin soaking in borax. This shall soothe the most troublesome inflammation and give you some peace so that you can research your long-term strategy.
2. Eliminate causes of stress. This might be challenging if it concerns your husband, job or living situation, but it might be just the change your soul is asking of you to bring about remission. You cannot heal in the environment that made you sick.
3. If you cannot change your situation immediately, make some space for yourself and for managing your stress levels – self-care, meditation, relaxation exercises etc. Make it a daily practice to take time just for yourself, slow down and tune into your body’s needs.
4. Explore the causes of hidden stress. This is high-level psychotherapeutic work and you will likely need some support with that. I recommend process-oriented psychotherapy, Jungian based psychology, somatic experiencing or psycho-somatic approaches to therapy. If that’s not within your means right now, journaling or intuitive self-led movement are simple practices that you can start on your own.
5. Choose a good holistic therapist who will help you address the physical and emotional symptoms of your chronic condition. There are many approaches that can help you put this thing into remission. My obvious favorite is homeopathy. I don’t know anything like it that would be able to address disease at its very root, and thus removing it for good. And it works at both the psychological as well as physical levels at once!

To see how you can work with me and tackle your Lichen Sclerosis for good click here.

And if you have any further questions, ask me down below!