Many people are unaware that they suffer from the disease. Partly for this reason, it can sometimes take years before endometriosis is diagnosed.
In a broadcast of Humberto says gynecologist Dr. Ellen Klinkert that as many as 400,000 patients suffer from the disease endometriosis. Together with endometriosis patient Roos van Beek, she talks about the condition. “It is quite difficult to explain. It’s already difficult to pronounce; it’s a word that a lot of people don’t know,” she says.
Endometriosis is a condition in which tissue similar to the lining of the uterus (called the endometrium) is found outside the uterus. This causes a chronic inflammatory response, causing scar tissue to form. As a result, patients experience severe pain that is often related to their menstruation. Some also experience pain during sex and even during urination and defecation.
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Remarkable: it takes an average of seven (!) years before a diagnosis is established. It took even longer for patient Kim Gündel; she only got after 22 years the correct diagnosis. Roos also waited a long time before she was diagnosed. Only after seven years did she find out that she suffered from endometriosis.
According to Ellen, this is partly due to the culture in the Netherlands. In addition, there is simply too little knowledge about endometriosis. She says: “Many women think: ‘menstrual pain is part of it’. That’s kind of the culture. Menstrual complaints; you don’t talk about that. You get through that. You take a paracetamol and you keep going. But for women with endometriosis, that’s not a bit of pain — those women crawl on the floor when they have their period.”
Ellen also says it is difficult for doctors to diagnose endometriosis. There is no specific test for this. “You don’t have a simple test you can do to prove it. If we could do a blood test, it would be fairly easy to diagnose, but unfortunately we don’t have one,” she says.
Roos had her first period when she was eleven. Soon she experienced severe pain, which made her physically ill during her menstruation every month. Every year this got worse and doctors suggested to fight the pain with birth control pills. Eventually the pain became too unbearable and she ended up in the hospital, where they prescribed opiates and ketamine to ease the pain. “I wanted to get rid of the pain because I couldn’t do anything anymore. I always have complaints.”
Although a little pain during menstruation is normal, Ellen recommends seeing a doctor if extreme pain develops. In consultation with the doctor, an appropriate treatment plan can be looked at.
Curious about the whole conversation? Watch the episode here.