A pain in your stomach that is so fierce that it feels like barbed wire on burnt skin. And that day in, day out, for years. The Eindhoven Lotje Peeters (44) has endometriosis and, after many treatments and operations, has to continue with that pain: “If nothing helps, I have a tattoo put as a distraction against abdominal pain.”
Lotjes family knows her no different when the girl with abdominal pain: “From the age of thirteen I already ran the doctor. At the age of 23 I was diagnosed with irritable bowel syndrome, followed by the first operation. ”
It yielded little, until a few years later Lotje came to the doctor with enormous abdominal pain. “He felt two large growths in my stomach. It turned out to be large cysts that had to be surgically removed. ” From that operation it emerged that Lotje suffers from endometriosis.
Endometriosis is a condition in women where tissue resembles the womb lining causes inflammatory reactions. The mucous membrane that is normally on the inside of the womb is also found on the outside of the womb. Those pieces of mucous membrane can cause a chronic inflammatory reaction that can result in scar tissue. The inflammatory reactions that arise from endometriosis can lead to severe abdominal pain and even infertility. One in ten women has endometriosis.
Women walk around for years with complaints before the condition is determined. According to researcher and retired gynecologist Marlies Bongers, that has two causes. She sees that women often think too long that abdominal pain simply belongs to menstruation: “The step to go to the doctor for that is just quite big.”
But, according to Bongers, GPs can also become more alert: “They must really listen to these women. It is not normal to have so many complaints, it is not part of it. And it is important that they are well referred to a gynecologist and not to a stomach, intestinal or liver doctor. ”
Lotje endorses that too. “If you go to the GP station with abdominal pain, it is said so often: oh well, it is probably stress or you are not feeling well. Women are not heard enough. I think that’s really terrible. “
“Even after the transition you can continue to suffer from endometriosis.”
After her diagnosis, there was no end to the pain. Lotje has a form of endometriosis that also attacks her intestines and bladder. As a result, a total of 25 centimeters has already been removed from her intestines and has had a stoma. The most famous form of the condition mainly occurs around the womb and ovaries, but they are removed from Lotje.
Doctors told her that she could not have any endometriosis. But Bongers also indicates that this is indeed possible: “Even after the transition you can continue to suffer from endometriosis, because it is so difficult to remove it completely. The worst answer you can give as a doctor is that something is not possible. Then as a woman you really feel put in the corner. “
The pain complaints of endometriosis had a huge impact on Lotje’s life. She worked as a teacher at a secondary school in Eindhoven and had to report sick more and more often. She came home several times with a burnout and after seven abdominal operations she had to give up her work as a teacher two years ago. “I remember that I said to the company doctor:” If I could give a leg to teach again, I would do it. ” I love teaching. Having to stop with that is almost unbearable. “
“Sometimes I think, I wasn’t there anymore.”
Mentally it also had a big impact: “Sometimes I think, I was no longer there, then there was no pain either. It is sometimes so intense. ” If medication does not relieve the pain, she calls the hospital: “I often cannot go there immediately, but pain does not stop after office hours.”
Learning to deal with pain helps her: she has learned to look for distraction. Lotje points to a large, colorful wreath in her living room full of shiny Christmas balls. They make those wreaths herself. At home she has her own studio with cupboards full of Christmas decorations and parts. Here she comes to rest.
Another, special method that allows the pain is outdoors. If the pain becomes so fierce that nothing helps anymore, Lotje dives into the tattoo studio. “When I am tattooed, I sometimes even sleep, then I finally have relaxation.”
Lotje hopes with sharing her story that other women recognize themselves and that shame removes. “I would like the taboo around endometriosis to disappear and that girls dare to go to the doctor immediately with kun complaints.”