{"id":7195,"date":"2025-10-14T14:51:29","date_gmt":"2025-10-14T14:51:29","guid":{"rendered":"https:\/\/lotteboekhout.nl\/blog-een-persoonlijk-verhaal-over-lichen-sclerosus\/"},"modified":"2026-07-21T09:05:08","modified_gmt":"2026-07-21T09:05:08","slug":"blog-a-personal-story-about-lichen-sclerosus","status":"publish","type":"post","link":"https:\/\/lotteboekhout.nl\/en\/blog-a-personal-story-about-lichen-sclerosus\/","title":{"rendered":"The story I wish I had been able to read"},"content":{"rendered":"\n


Lichen sclerosus \u2014 the story I wish I had been able to read<\/h1>\n\n\n\n

Written by Lotte Boekhout<\/a><\/p>\n\n\n\n

Sometimes you receive a diagnosis that affects not only your body, but also how you feel about yourself. Lichen sclerosus was that kind of diagnosis for me. Not only because I suddenly had to learn to live with something chronic, but also because it concerned a part of my body that feels so vulnerable.

What I remember most from that period is how alone I sometimes felt. Of course there was medical information. But I was looking for words that could reassure me. For someone who spoke honestly about what it is like to live with this, without immediately confronting me with the worst-case scenario. Someone who showed me that this diagnosis is allowed to have an impact, but does not have to mean the end of trusting your body. That was what I missed at the time.<\/p>\n\n\n\n

That is why I am writing this blog. Not because I have all the answers, but because I know how valuable it can be to read something in which you recognise yourself. A story that is not only about lichen sclerosus, but also about what it does to you on the inside. And about how, step by step, you can begin to find something to hold on to again.<\/p>\n\n\n\n

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How it all began<\/h2>\n\n\n\n

In the summer of 2021, I had been dealing for some time with what I thought was an \u2018ordinary\u2019 yeast infection. In the end, however, I decided to visit my GP. She listened carefully to my symptoms and continued investigating when the usual treatments did not work. She therefore referred me to a gynaecologist. That was where I eventually received the diagnosis of lichen sclerosus.<\/p>\n\n\n\n

Fortunately, the diagnosis came in time. Thanks to it being identified early, I have not developed severe symptoms, and I am still incredibly grateful for that.<\/p>\n\n\n\n

The loneliness of living with lichen sclerosus<\/strong><\/h2>\n\n\n\n

I remember very clearly how I felt when I received the diagnosis. I was confused, had lots of questions and, above all, felt afraid. As soon as I got home, I searched online for other people’s experiences of lichen sclerosus. Unfortunately, what I found only made me more anxious.<\/p>\n\n\n\n

Online, I mainly read distressing stories from women in a great deal of pain and with lasting symptoms. Although my own symptoms were milder at the time, I still began to worry. What if it gets worse? What if I can never live without symptoms again?<\/p>\n\n\n\n

I also noticed that there were hardly any positive stories about coping with lichen sclerosus. Where were the women who were able to live well with this condition? Who were not badly affected every day? That was exactly what I missed so much. I longed for recognition, but also for hope.<\/p>\n\n\n\n

More than physical symptoms alone<\/strong><\/h2>\n\n\n\n

The physical discomfort was one thing, but for me the emotional impact of lichen sclerosus went much deeper. I felt affected in my sense of womanhood. The symptoms were located in precisely the part of my body that, for me, felt closely connected with my femininity. So it affected me not only physically, but also on a deep emotional level.<\/p>\n\n\n\n

The doctors were kind and understanding, and medically speaking things were going well. The treatment worked and my symptoms remained under control. Yet I often felt misunderstood. It was difficult to explain that this was not only about physical symptoms, but also about an emotional wound that no steroid ointment could heal.<\/p>\n\n\n\n

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Finding my own way with lichen sclerosus<\/h2>\n\n\n\n

In the period after my diagnosis, I often felt lonely and lost. Although I sometimes shared my feelings with friends, it remained difficult to truly explain what I was going through.<\/p>\n\n\n\n

I therefore decided to take the lead myself and look for ways to cope better with lichen sclerosus. I felt that, for me, more was needed than medication alone. An important turning point came when I had my contraceptive coil removed. To my surprise, my symptoms eased almost immediately. Looking back, I think the coil may have been a trigger for my symptoms (although that does not, of course, mean it will be the same for everyone).<\/p>\n\n\n\n

My search for effective self-care then led me to personal development, coaching and various lifestyle changes. Step by step, I learnt to listen more closely to the signals from my body, my feelings and my connection with my femininity. I gradually noticed an improvement, not only physically but also in my emotional resilience.<\/p>\n\n\n\n

The moment everything changed<\/strong><\/h3>\n\n\n\n

An important breakthrough came when I happened to book a massage with a woman who turned out to have lichen sclerosus herself. What began as a simple massage turned into a profound and healing conversation. For the first time, I felt truly seen and understood.<\/p>\n\n\n\n

She listened with her full attention, and it was precisely her own experience that meant she could not only comfort me, but also offer valuable practical guidance. This gave me a sense of recognition, relief and renewed strength. Realising that I was not alone on this journey changed the way I viewed lichen sclerosus for good.<\/p>\n\n\n\n

Why I am sharing my story now<\/strong><\/h3>\n\n\n\n

I am sharing my story because I know there are more women like me. Women who may have only just been diagnosed with lichen sclerosus, who are wrestling with frightening questions and looking for recognition and answers. I want them to know that they are not alone.<\/p>\n\n\n\n

Lichen sclerosus calls for more than medical care alone. Emotional support, self-care and developing a deep connection with your body also play an important part. Fortunately, there is hope. There are ways to live well with this condition. And, above all, you do not have to do this alone.<\/p>\n\n\n\n

With this blog, I hope to bring a little light into the darkness you may feel after this diagnosis. You are not alone, and there are many ways to find strength and recover, not only physically but also emotionally.<\/p>\n\n\n\n

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Lotte Boekhout practice<\/h2>\n\n\n\n

Have you got lichen sclerosus and been told that you \u2018just have to learn to live with it\u2019? I believe things can be different.<\/p>\n\n\n\n

In my coaching<\/a>, there is space for what these symptoms do to you on the inside, and together we explore what you need to regain a sense of control over your symptoms. Curious about what may be possible for you? You are welcome at my online drop-in session<\/a> or for a free discovery call<\/a>.<\/p>\n\n\n\nOne-to-one coaching<\/a>\n\n\n\nOnline drop-in session<\/a>\n\n<\/div><\/div><\/div>\n\n

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Read my latest articles<\/a> about lichen sclerosus<\/h2>\n\n\n