I thought my vaginal opening would shut due to an autoimmune condition. My doctor taught me how to manage it.

• I thought I had thrush and tried to treat it with over-the-counter medicine.
• After seeing a doctor and explaining my symptoms, I was diagnosed with lichen sclerosus.

"You have lichen sclerosus," my doctor said.

Lichen sclerosus. The name was unfamiliar and reminded me of pond scum.

"We can treat it with steroids," my doctor continued, "but it's a chronic condition and it will come back. We don't have a cure for it yet."

My brain was imploding, trying to take it all in. Having previously been diagnosed with Crohn's disease and anxiety, I'm no stranger to chronic illnesses and the impact they have on both physical and mental well-being. Adding a new one into the mix, especially one that affected my vulva, took me by surprise. I'd thought I'd been suffering from a particularly persistent bout of thrush, also called a yeast infection or candidiasis.

My doctor explained what lichen sclerosus is and how to treat it

I nodded along as the doctor explained more about the condition, but I wasn't taking it in. All I could focus on was the phrases "chronic condition" and "will come back." She prescribed a strong topical steroid, instructed me to apply it to the affected area daily, and arranged a follow-up appointment for the following month.

My symptoms included an itchy sensation on my vulva and around my anus that would get worse at night, and I had tiny cuts around the area, similar to those you get when you nick yourself with a razor. I was also easily irritated by wearing certain underwear and tight clothing and using both internal and external menstrual products irritated the area.

My labia majora had this strange, heavy feeling, and my doctor also told me there were white patches — the trademark symptom of lichen sclerosus — all over my vulva. As soon as I got home from my appointment, I went online to find out more about the disease. Of course, I knew a search would bring up worst-case scenarios, but how bad could it be?

The Google search took me to message boards where people with the same diagnosis spoke about losing their labia minora, the clitoral hood fusing shut, and in some cases the vaginal opening closing altogether. Many said that their sex lives and relationships were damaged because of the anatomical changes, physical pain, and lack of confidence that were part of life with lichen sclerosus. Additionally, I found people were anxious their condition could evolve into vulval cancer — I discovered around 4% of those diagnosed with lichen sclerosus are later diagnosed with vulvar cancer. How had I not heard about this before?

I'm not the only one who has mistaken lichen sclerosus for thrush

Although sometimes referred to as a rare condition, there are approximately 200,000 people in the United States with a lichen sclerosus diagnosis, and many more who have likely been either misdiagnosed or who are living with it unknowingly.

"Lichen sclerosus is often under-recognized rather than rare," Jo Morrison, a consultant gynecological oncologist working for the UK's National Health Service, said. "It is often misdiagnosed as thrush, and one problem with that is that some anti-thrush treatment has weak steroid — hydrocortisone — in it, which can improve symptoms temporarily, so people think the anti-fungal treatment has worked, whereas it might be the hydrocortisone. Women may self-treat for years before they ask for help."

This mirrors my own experiences, having used both over-the-counter and prescription thrush medications to treat my symptoms in the six months prior to my diagnosis. Each time pain lessened, I presumed everything was fine, and then the pain and itchiness returned.

"Evidence shows that using maintenance steroid cream one to two times per week helps to reduce flares; however, women are often told to use it only for a short period of time," Morrison said. She explains that it's an autoimmune disease, and while symptoms can be controlled with maintenance measures, it can't be cured.

"Lichen sclerosus can occur at any age but is relatively rare in children," she said. "The incidence increases as women approach menopause and especially in the more elderly. One study of elderly women in care homes showed the rate was as high as 3%."

And although lichen sclerosus is more common in women, it can also affect men, who may notice itchiness or white patches around their foreskin. Other symptoms for both men and women include smooth, discolored skin patches; blotchy, wrinkled skin patches; itching; and soreness, all in the genital area. Skin becomes fragile, meaning it may bruise easily and sores and blisters may occur. Although it usually affects the genitals, lichen sclerosus is an autoimmune condition and is not passed on through sexual contact.

I'm learning to deal with my diagnosis

After the initial shock of my diagnosis, I am learning to live with it. I regularly check my vulva for changes that could indicate a flare or squamous cell carcinoma (the first signs of cancer), and I'm aware of how to help myself with tools such as vaginal dilators if the condition worsens. I am also determined not to be embarrassed. Silence around gynecological issues only leads to suffering, so increasing knowledge by speaking openly is important to me.

Online groups such as the Lichen Sclerosus Support Network aim to increase awareness of lichen sclerosus among medical professionals, such as nurses and GPs, and among women generally. Hopefully, with increased education, more women will seek the help they need.