10 percent of women suffer – often without knowing it – from endometriosis, and this can affect fertility

Endometriosis is usually located in the abdomen, but can also occur in other places, even in the chest cavity.Beeld Getty Images

“Endometriosis is the presence of tissue that resembles the uterine lining in places outside the uterus,” says Denise Pelikan, gynecologist at the HMC Endometriosis Center (HEC). “Usually in the lower abdomen, but it can also occur in the upper abdomen, for example on the diaphragm or in a scar after a caesarean section, but it can even occur in the chest cavity (lungs).”

It is not exactly clear why 1 in 10 women in the fertile phase of life has endometriosis and how it arises. According to the gynecologist, factors such as heredity or immune system disorders may play a role. “We see it more often in women with mothers and sisters who also suffer from endometriosis,” says Pelikan. “But immune disorders and menstrual blood that ends up in the abdominal cavity also seem to play a role.”

Complaints often not recognized

A 16-year-old student with persistent abdominal pain. A 28-year-old teacher who is not yet pregnant 15 months after stopping the pill and a 39-year-old dental assistant with clear bleeding. Three endometriosis patients tell their stories in a recent article from the Dutch Journal of Medicine. According to the gynecologist, many women have complaints that are not recognized as consistent with endometriosis. According to her, the fact that many different symptoms can indicate endometriosis makes it so difficult that it takes an average of 7 years before the diagnosis is made.

The gynecologist sees women every day – from young to older – who are referred with complaints that could be consistent with endometriosis. Pelikan: “This concerns complaints such as pain during menstruation, pain during urination, chronic pelvic pain, pain during sex, pain during defecation, irritable bowel, reduced fertility, pelvic pain or back pain with radiation, blood in the stool or fatigue. It is important to know that the complaints do not only occur during menstruation, but can also be present continuously. Women who think they have complaints that are consistent with endometriosis or are unsure about this can have a self test do it on the Haaglanden MC website.”

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Places where often pieces of mucous membrane can cause complaints with endometriosis.  Image HMC Endometriosis Center (HEC)

Places where often pieces of mucous membrane can cause complaints with endometriosis.Image HMC Endometriosis Center (HEC)

Endometriosis can be dangerous if it is discovered too late. “For example, there may be organ damage to the intestine or ureter,” says Pelikan. “It is therefore important that every woman with complaints completes an extensive questionnaire, has an interview with a specialized nurse and gynecologist and that a gynecological examination and an ultrasound are performed. After the first visit it is often clear whether or not there is endometriosis. So we don’t want to scare women, but we do want to make them aware of it.”

There are various treatments for endometriosis. Which treatment is suitable depends on the woman’s wishes and the severity of the complaints. Pelikan: “We believe it is important not only to treat with medications (hormones and painkillers), but to also look at diet, lifestyle and, if necessary, offer physiotherapy and psychological support. A possible desire to have children naturally plays a major role in the type of treatment. When the endometriosis is more advanced, we can remove the tissue with surgery.”

Reduced fertility

When adhesions develop around the uterus, fallopian tubes and ovaries, endometriosis can lead to reduced fertility. But there are other factors that influence fertility in endometriosis. “For example, the unfavorable influence of inflammatory proteins on the environment in the abdomen, which makes the sperm cell less able to fertilize the egg,” says Pelikan, “but also the changed sensitivity to certain hormones, which can impede ovulation or reduction in the number of eggs due to cysts or surgery on the ovaries.”

In women with endometriosis and a desire to have children, it is important to have a good idea of ​​the severity of the endometriosis, so that it can be estimated how much influence the disease has on the chance of becoming pregnant. The gynecologist advises women to be well informed so that they are in the right place before and during pregnancy and after childbirth. “Sometimes additional checks or a referral to a fertility center are necessary,” says Pelikan. “Once pregnant, we know that certain problems occur more often. It is therefore important that a plan is made for the management of the pregnancy, depending on how far the endometriosis has spread and where it is located.”

Jane Wijbers (37), dietitian in training, researcher at the Endometriosis Center Amsterdam UMC and volunteer at the Endometriosis Foundation, suffered from complaints for years without knowing that she had endometriosis. The diagnosis was officially made in 2018.

“From the age of 15 I had a lot of pain during menstruation. I thought it was normal for me to lie curled on the couch in pain every month. The doctor prescribed me the contraceptive pill, but during a week off I still had severe abdominal pain. The complaints became increasingly worse. I suffered from pain in my lower back that radiated to my legs, constipation, pain during defecation and pain and blood loss during and after sex. I had stomach pain every day, a swollen stomach that felt like it was about to burst and I was often very tired.”

Chronically ill

“According to my doctor, my complaints were simply part of menstruation. I could swallow the pill or take extra painkillers when I was in so much pain and I was sent home with the same message over and over again. As a result, I lived with these complaints for another 3 years. Ultimately, after insistence, I was referred to the endometriosis expertise center, where the gynecologist was able to see within 5 minutes via a vaginal test that I have endometriosis. I was sad and relieved at the same time. Finally I was taken seriously, but I am also chronically ill. At the time I had no idea what this meant for my future.”

“I can keep my complaints under control, especially through changes in my lifestyle, such as nutrition, relaxation and exercise. But I have to pay constant attention to it and ensure that I distribute my energy well, because I get tired more quickly than someone who does not have a chronic illness. Fortunately, I currently have fewer complaints from endometriosis and I am actually doing quite well.”

Unfulfilled desire to have children

“Unfortunately, I still have an unfulfilled desire to have children due to endometriosis. Becoming pregnant also controls your life and that of your partner to a certain extent. I think we’ve been trying to get pregnant for about 3 or 4 years now. We have also had several IVF processes, which have only led to disappointments and losses so far. The hope that we will one day be parents of a little miracle diminishes every day. This does bring physical and mental complaints. I therefore sought psychosocial guidance to support this process.”

“I would like to urge all women, transgender and gender-diverse people who suffer from endometriosis-related complaints to always sound the alarm. Make an appointment with your GP, insist on a referral and/or contact the Endometriosis Foundation.”

Jane Wijbers.  Image Private archive

Jane Wijbers.Image Private archive

The post first appeared on www.parool.nl

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