For an estimated 200 million women worldwide, endometriosis is not ‘just cramps’. It is a chronic and often debilitating disease that affects fertility, daily functioning, and quality of life. The societal and economic impact is substantial, yet diagnosis remains difficult. Symptoms vary widely and often involve intimate aspects of life, which can delay recognition.
In light of Endometriosis Awareness Month this March, we sat down with Annemiek Nap, professor in obstetrics, gynaecology, and reproductive health and head of the department Obstetrics & Gynaecology. Here, we discussed how the endometriosis expertise center at the Radboudumc provides care for patients and how current research could pave the way for future treatments.
What is happening inside the body?
In people living with endometriosis, tissue similar to that of the uterine lining starts growing outside of the uterus. This tissue can cause many physical issues, including years of relentless pain, heavy menstrual cycles, and even infertility. This is not normal, but unfortunately rather common. While 5-10% of women live with endometriosis, its underlying causes are still poorly understood. Annemiek explained the current working theory behind endometriosis, so-called retrograde menstruation. During menstruation, some uterine cells flow upwards instead of out and spill into the abdominal cavity. As a result of immunological and genetic factors, these cells are not removed and cause many issues.
Current treatment options mainly target symptoms and include contraceptive hormone therapy, pain relief, and surgical removal of endometriotic lesions. Unfortunately, it takes about seven years until endometriosis is diagnosed. One reason for this is a lack of awareness. Many women describe years of being told their pain is ‘normal,’ ‘stress-related,’ or ‘part of menstruation’ before finally receiving proper care. Second, endometriosis is historically diagnosed with invasive and potentially dangerous surgeries, so patients would have to be in a lot of pain before surgery is considered as an option.
When pain rewrites your life
Living with endometriosis has a huge impact on people, as they deal with relentless pain that shapes daily life. Annemiek explained passionately: ‘Because of the pain, women can have trouble working as many hours as they want to, finishing their desired studies, or caring for their family and kids’. Many people with endometriosis also deal with mental health problems like depression and anxiety on top of their physical ailments.
In turn, endometriosis also has immense economic and societal impact. According to Annemiek, ‘It really hits women in the prime of their life, where the world wants many things from them all at once’. She further explained that she sees acceptance of and finding ways to live, function and work with their condition as one of the main takeaways of her career. Endometriosis is common and debilitating, but too often invisible to the environment. ‘You can imagine that it can be a big step to go up to your manager and talk about menstruation or bowel movements, which can be quite a sensitive topic’, Annemiek said.
How to tackle endometriosis together
When we asked what is unique about endometriosis care at our hospital, Annemiek described that we are a level 2 expertise centre recognised by the Dutch Association for Gynaecology (NVOG). Together in a network with other hospitals in the area, we collaborate and provide the same high-quality care for people with endometriosis. Complex cases can be discussed in shared meetings, which means fewer second opinions are required. In addition, a patient’s treatment is discussed in a multidisciplinary team with experts from many different fields. This provides a holistic perspective: ‘not only looking from a medical-technical point of view but considering the patient as a whole’, Annemiek explained. On top of traditional surgical or medicinal interventions, patients also get psychological or dietary support to ensure the best care possible.
Our hospital also contributes to scientific development in endometriosis in multiple ways. For example, contraction suppressants were able to substantially lower pain during menstruation in a recent pilot study coordinated by Dr Bertho Nieboer. Annemiek explained that these results should first be replicated at a larger scale, but that this could pave the way for new non-surgical treatment options in the future. In addition, she mentioned having faith in dietary interventions, because this could empower women to self-manage their symptoms. Finally, Annemiek expressed her pride in a study on the treatment of endometriotic cysts. Surgeries to remove these cysts often damage the surrounding ovarian tissue and lower fertility. The current study uses corrosive fluid as an alternative, which could protect fertility. Thankfully, we can conclude there are promising scientific developments on the way.
Takeaways for the future
Annemiek recalls a patient where endometriosis severely infiltrated the bowel, who requested a colostomy. Initially, this felt like a drastic, even unthinkable, step. ‘She said she needed a colostomy, but as a doctor, I thought: this young woman doesn’t want a colostomy, and we have to do everything to prevent that’. Yet, in the end, the procedure gave the patient her life back and she even became a mother to two children. ‘I learned that it’s not up to me to decide what a patient wants,’ Annemiek reflects. Individualised care and careful listening to patients’ needs are still central in her work to this day.
Finally, Annemiek tells us that the awareness for endometriosis has fortunately increased drastically over the past few years. ‘Only a few people in the Netherlands do not yet know what endometriosis is. That was different 5 years ago’. But awareness of the symptoms, diagnostic delays and relentless pain? That gap remains stubbornly wide. So, the message for this Endometriosis Awareness Month is clear. The future of endometriosis patients depends on early recognition, genuine listening, and treatment that sees the whole person behind the disease.
Want to learn more about endometriosis? Annemiek will do a live Q&A (in Dutch) on Wednesday the 11 March between 9.15 - 10am. The event can be found on the Facebook page of the Radboudumc.
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Blog by Kim van den Nobelen & Robbin Kramer
Jr. editors for Radboudumc Research Institute for Medical Innovation
