It’s urgent. Endometriosis affects regarding 10% of women of childbearing age, and it takes 7 years on average before the diagnosis is actually made. In addition, once this step has been taken, the management is still today often unsuitable and the therapeutic options limited. Along with this observation, the women concerned suffer and have a degraded quality of life. So what to do? A study has just been carried out to give patients a voice. Thus, 1,000 women suffering from endometriosis answered the following question: If you had a magic wand: what would you change in your care? »
Among them, 68.5% had endometriosis, 3.7% adenomyosis and 27.8% both. About a third reported the severity stage of their endometriosis, which was severe (IV) for half of them. The average age of the women was 34.1 years at inclusion and just under a third (28.7%) reported at least one comorbidity.
Overall, 2,487 ideas emerged and were classified into 61 areas for improvement. Here are the main suggestions received:
- The women who responded suggested better organization/coordination between caregivers for a care pathway integrating a multidisciplinary approach, possibly with a specialized referring doctor. They want these adaptations to lead to an earlier diagnosis. Furthermore, they would like to be more involved in the treatment decision and underline the importance of taking into account their expertise concerning their illness.
- According to them, the improvement of medical care requires better knowledge and recognition of the disease by caregivers. They insist on the training of doctors but also the effort that certain professionals must make in terms of listening, empathy, benevolence and proactivity in transmitting information. Overall, they expect the medical profession to give better consideration to their symptoms. They denounce sometimes sexist care, as well as certain inappropriate remarks and the non-respect of their privacy, …
- They underline the value of psychological support (in groups in particular), to make them feel less alone in the face of the disease.
- They would like better support with questions relating to fertility and pain.
- They seek the development of drugs with fewer adverse effects, a limitation as much as possible of recourse to surgery and would like a greater opening towards alternative medicine and self-management.
- They offer easier access to care geographically, and shorter delays before obtaining an appointment or carrying out an examination. They also require longer consultations.
- On another level, they propose the recognition of endometriosis by the world of work, with the organization of workstations and working hours and/or by creating specific leaves if necessary.
- Finally, they would like a reduction in the financial impact of the disease on their lives with better coverage of certain treatments and care.
We now bet that the ideas that emerged from this survey will contribute to defining a care model adapted to the expectations of patients.
