This month is Endometriosis Awareness Month and extra attention is being paid to Endometriosis worldwide. In the Netherlands, an estimated four hundred thousand women have this progressive chronic condition. Sharon is one of them. After years of struggling, she got her complaints under control thanks to a special wheat diet.
Endometriosis is a benign, chronic condition that affects 10% of all women of childbearing age. In the Netherlands, there are an estimated four hundred thousand women. In women with endometriosis, tissue similar to the lining of the womb (endometrium) also grows outside the uterus. As a result, various organs or organ systems can be affected.
Unfortunately, Sharon can relate to this. “My complaints started immediately after I started menstruating. In the beginning I thought I was a poser, that one person just has more complaints than the other. But over time I started to realize that I was extremely bothered by my periods.” At the age of seventeen she is told that she has endometriosis.
Double the pain
Her periods are so heavy that Sharon can barely get out of bed in the morning. “I had so much cramping that I couldn’t even stand up straight,” she says. Unfortunately, it does not stop with unbearable pain and extreme blood loss during her periods, but she also suffers from ovulation pain. “It was so bad that my mother regularly had to call me in sick from school when I had my period or ovulation.” She discusses her extreme menstrual and ovulation pain with her friends, but they don’t recognize these kinds of intense complaints at all.
It was so bad that my mother regularly had to call me in sick from school
When Sharon passes out from the pain at work at the age of seventeen, it becomes clear that this cannot continue. “The GP gave me an injection against the pain and made sure that I could go to the gynecologist the same day.” There she is told that she has endometriosis. A week later, Sharon has surgery and the excess tissue is removed. “After the operation, the gynecologist said that the operation was successful, but that it would have to be seen in the future whether they had not removed too much tissue and that I had become infertile. A comment that haunted me for a long time.”
Hormones
To prevent endometriosis, Sharon has to take hormones. “Unfortunately that only helped temporarily; less than two years later, the endometriosis had become so bad again that I had to have another operation.” After this operation it remains quiet for four years. “When I was twenty-three, the endometriosis stuck to my abdominal wall and I couldn’t avoid going under the knife for the third time. No matter what hormones I took, the endometriosis broke through everything.” After Sharon got married, she had a miscarriage, something that unfortunately often happens with endometriosis. “It’s a miracle that I had four children; I have had five miscarriages in total.”
Last menstrual period
Sharon’s last period is forever etched in her memory. “We were on vacation when I got a bad stomach ache during a dinner party.” When she goes to her hotel room, she sees that she is losing a lot of blood. “I really thought I was going to bleed to death. In a panic I called the gynecologist in the Netherlands.” Sharon is advised to take it easy and go to a local hospital if her symptoms worsen. “Fortunately it subsided a bit and I didn’t have to go to the hospital in the end.” The fear is good. Once back in the Netherlands, she will be examined. “The gynecologist advised to have my uterus removed so that a recurrence could be prevented.” Sharon agrees and has surgery not long after.
I thought I would bleed to death
After her uterus is removed, Sharon starts having strange symptoms. “I had to go to the toilet all the time. Even if I had just been there before. Eventually, the constant urge to urinate drove me crazy.” If research shows that it is not a bladder infection, the doctor suspects that there is endometriosis in her bladder. “Examinations indeed showed that the endometriosis had spread to my bladder, intestines and to the inside of my abdominal cavity.” Sharon is advised to take hormones again.
Wheat intolerance
“Honestly, I was done with hormones,” says Sharon. She decides to look for other options. “I wondered if there really was nothing else to get endometriosis under control.” Then she notices an article that states that about 80% of all endometriosis patients are wheat intolerant. “It said that all kinds of inflammations can arise due to a wheat allergy, which ultimately causes endometriosis.” Sharon is skeptical at first. “I didn’t really believe in it; my gynecologist would have told me that.” Still, it won’t let her go. “I read experience stories of people with endometriosis who claimed that they were virtually symptom-free because they followed a wheat-free diet.”
Complaint-free thanks to a wheat-free diet
Sharon decides to discuss her discovery with her gynaecologist. “He told me that he was not allowed to advise a wheat-free diet himself, because this was not scientifically proven. However, he indicated that he had a patient where a hysterectomy could be prevented thanks to this diet, and indicated that it was definitely worth trying.” This is decisive for Sharon. She decides to follow the diet and soon notices that her complaints are decreasing. “Now I am even as good as complaints-free!”
I can finally go through life without complaints
She would like this knowledge to be shared more widely with endometriosis patients. “In a large proportion of all patients who have started this diet, the complaints are greatly reduced.” Not that it’s an easy diet to follow. “Anything containing wheat and gluten should be avoided. I even bake special bread. Because I can finally go through life without complaints, I am absolutely willing to do this. If I ever consume gluten, I immediately double up in pain, so I like to stick to this diet.” She also advises women with endometriosis to delve into the wheat diet. “It is definitely worth a try, I benefit a lot from it and I also wish others!”