PatientsAbout one million Dutch people suffer from a rare condition. As a result, making the correct diagnosis and finding the right treatment is often complicated. In this series, experts talk by experience about the effect of this. Today Dewertje (37) on labia cancer: “When I got bad news again after the second operation, I thought: I don’t know if this will be okay.”
It started with a spot on the labia and a burning sensation when urinating. “It’s annoying, but not something to call a doctor right away,” Duertje thought. I decided to do it when the complaints didn’t go away after a few weeks.
She came back from the GP with a diagnosis (the condition of the skin lichen sclerosus) and a hormonal ointment, but also with a feeling that something wasn’t right. The ointment did not help and I read that lichen sclerosus sometimes causes cancer.
After the brief urging of a gynecologist, a biopsy was taken. He was bleeding heavily and Duertje came home feeling even worse. A few weeks later, a bad result followed: the “spot” turned out to be malicious.
The risk of developing cancer of the labia is relatively small, and even lower for young women. It is unlikely that multiple operations will be required. Dewertje had to submit to three. “When I got bad news after the second operation, I thought: I don’t know if this will be okay.”
What is labia cancer?
The exact cause of labia cancer is unknown. However, women with lichen sclerosus (LS) of the vulva or long-standing HPV infection have a higher chance (primary stage) of labia cancer. Surgery is usually the first treatment, and other options are chemotherapy, radiation, or chemotherapy. Possible consequences are sexual problems, problems with urination or defecation, lymphedema, fatigue and early menopause. In the Netherlands, approximately 400 women are diagnosed each year. For more information and to communicate with other patients, please contact Olijf.nl.
The operations were successful, but they had repercussions. I get tired faster, mentally too. I mainly plan for important work in the morning, because my focus is much less in the afternoon.” Because of lymphedema, she wears compression socks, “something okay,” even with the warm weather.
What helped her was that she was always very energetic, even in between runs that she walked as often as possible. “It was hell at first. After the last operation I cycled for a while because walking was not possible.”
It demonstrates the “shoulders under position” for Diwertje. “I don’t like to whine and complain. Of course I’m not positive. I also spent a day crying in a corner. But with a family you have to move on, you know what you’re doing for it.”
Intentionally I don’t say vulvar cancer, but labia cancer. Then it becomes immediately clear what is going on
She’s always been open about her boys, who are now 5 and 8, sometimes with a sense of humor to make the process a little easier. “Then I had a drain with pink stuff in it, and I said I got a raspberry orange.”
She doesn’t mention the word “Cancer” because it’s emotionally charged, but she doesn’t ignore it when it comes to other people. “I do not intentionally say cancer of the vulva, but cancer of the labia. Then it is immediately clear what is going on, and I am not ashamed of it either.”
Firmness pays off
She advises others in similar situations to be firm: When in doubt, see a doctor. “You don’t have to go to the doctor at every change. But sometimes you know when something is wrong. We get through that very easily, especially as a young mother in a busy life stage.”
She also noted the importance of being firm in the hospital. Keep asking and don’t think: it will be so. Then the options are made for you. Often things can be done differently, or a good explanation helps if there is no real choice.”
Dewertje is grateful that she is better. “I enjoy the little things again, like a picnic with the kids.”
I gave up physically. “I can pretend that such supportive storage does nothing, but at 37 years it is nothing.” She’s not really afraid that the cancer will come back, but the checkups create tension.
“After you send people the message that you are clean, you notice that they are no longer interested in it. This is of course understandable, but it is very difficult. I still work on it a lot myself.”
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