Charlotte (24) has Lichen: ‘the question of whether or not I will be able to have sex scares me a lot.’
White, hard spots on and around the genitalia, itchiness and scar tissue. They are all symptoms of Lichen, a chronic disease which cannot be cured. “I will have to deal with this for the rest of my life, that does make me sad.” Because Charlotte’s Lichen is also on her clitoris, it is uncertain whether she will be able to cum at a later stage of her disease. “When I heard that I was shocked.” The exact cause of the disease is unknown. There is evidence that it has something to do with a fault in the immune system which causes the inflammatory cells to attack the skin’s own cells. But it could also have something to do with bacteria, viruses or even with the hormone balance. In short, there is enough research that still has to be done.
It’s itchy down there
Fear for her IUD and an itch down there were the reasons Charlotte decided to visit the gynecologist. “I thought it was just a vaginal yeast infection, but I was a little worried as I experienced pain during sex as well. Moreover, I had heard fables about the influence of an IUD on your fertility.” The gynecologist saw abnormal white skin around the vagina: Lichen Sclerosus. Odd, because this usually occurs with women between 50 and 70 years old.
“My gynecologist was cold when she explained to me - whilst looking at the computer - that in the worst-case scenario my vagina could close up. I just had to deal with it, and taking a biopsy was unnecessary according to her. I was amazed at the unsympathetic way with which she treated me. The day after, when I was crying at the kitchen table and reading the most horrific stories about this condition on the internet, I decided to go and ask for a second opinion.”
‘My inner labia are hard and pale’
“It was the right choice. My second gynecologist was listening closely and understood the influence the news had had on my mental health. He reassured me and took a biopsy to determine with certainty what I have. It was a painful experience. I got a mirror, so that I could see how my Lichen had developed. I was so shocked. My inner labia were not soft and pink, but hard, white, and pale.”
The biopsy proved what the doctors already thought. It’s a mystery how long Charlotte already has Lichen, for her gynecologist as well as for her. “I mean, I’ve had some vaginal infections during puberty and after. But my mom, sister and friends also had that and they don’t have Lichen now.”
Because of the condition, Charlotte’s vagina is tighter than that of most people with a vagina. “It can lead to pain during penetration. Especially the insertion of the penis creates difficulties. But once he’s in there it’s alright. Thankfully it doesn’t influence fertility at all. However, there is a possibility that my Lichen stands in the way of a natural birth, simply because the baby can’t fit through my vagina.”
‘The mental aspect of it is difficult’
“To slow down the disease as much as possible I have to apply a special cream to my vagina two times a week. But, because I’m a little chaotic, I tend to forget. And by not treating it, it only gets worse. And then there is the idea that I might someday never have sex again, which makes me really sad and gives me this feeling of powerlessness. Thankfully my doctor told me that there is only a limited chance of that happening.”
Charlotte is gutted that she has Lichen. “Especially the mental aspect of it is difficult. It’s itching a lot, but I can control myself and suppress the need to scratch the itch. I’m not always in control of my thoughts though. Fortunately, I have a very sweet boyfriend who is understanding, for example, when I can’t have sex because it’s too tight down there. I have to look at it on a case by case basis, one day it’s too tight, or not wet enough, and the next day it’s completely fine.”
‘Look for a doctor you can trust with your vagina’
A tear appears on Charlotte’s cheek when asked if she is ashamed of her Lichen. Yet, a resolute ‘no’ is the answer. “It’s not a dirty thing and I can’t do anything about it. I feel alone sometimes though. But that’s just because I don’t know any other women of my age with Lichen. I hope that my story gives support to those people who also have it and I want to urge everyone to go to a gynecologist if in doubt and if there is pain in the uterus or the vagina.”
“And if your GP doesn’t want to refer you? Pretend your symptoms are worse than they are, so that you are still referred to a specialist. If my GP hadn’t referred me, then I would have most likely still walked around with Lichen without knowing it. In short: look for a doctor you trust. Your body and your vagina are such intimate things. It’s truly important that you feel safe and comfortable with your doctor...”
