Endometriosis: between new treatment opportunities and medical bias towards women

Globally about 1 out of 10 women in reproductive age is affected by endometriosis. Still, diagnostic and treatment options for affected women are very limited and many feel they are not taken seriously though their suffering is very real. How is this possible? Alcimed gives  you a look into how endometriosis affects women and what possibilities exist for future improvement.

What is endometriosis and what are the symptoms?

Endometriosis occurs when tissue similar to the inside of the uterus (endometrium) forms lesions outside the uterine cavity. This usually involves the ovaries, fallopian tubes and the pelvis-lining tissues. In rare cases the endometrium-like tissue can even be found on the diaphragm and lungs. The lesions can grow with the hormonal cycle and bleed which may cause scarring and infections. Most women suffering from endometriosis experience severe, debilitating chronic pain and it can cause infertility in some cases.

An unmet need for endometriosis early diagnosis and treatment shaped by stigma and medical bias

The disease is often not diagnosed correctly or far too late, frequently being dismissed as overdramatization of normal period pain. With symptoms like pain or fatigue being rather vague and relatively subjective, patients often report that they don’t feel they’re being heard or understood by their doctor, dismissing symptoms as being “all in their heads”. This prolongs the frustrating path many women must undergo to reach a diagnosis,  as shown by studies in the UK which concluded that sufferers have had to wait an average of 7.5 years before getting answers from clinicians about the symptoms and a diagnosis of endometriosis.

This is very problematic as a late diagnosis puts an extreme burden on the patient but also increases the risk for infertility which in turn emphasizes the urgent need for fast and reliable diagnosis to slow down the disease progression. And the condition has even more far-reaching socioeconomic implications with women affected perhaps not being able to work or study. Even after diagnosis, since there’s no cure available for endometriosis, managing and living with the disease can be a struggle.

Within this indication, the medical bias towards women and the gender health care gap is particularly apparent, especially considering that just now women and healthcare professionals are starting to speak up about it and to recognize the severity, complexity, and reality of the condition.

Though in recent years the situation has started to improve, awareness for the disease is still relatively low, and even when detected, many doctors don’t know how to properly treat and control endometriosis. More importantly, many patients are unaware of endometriosis and for many women there is still a stigma around reproductive health, and especially menstrual health, resulting in them suffering in silence.

Given the high incidence and the serious pathology of endometriosis, it seems worrisome that the pathogenesis and origin of it are still unknown and that no cure exists for the disease. While surgery to remove lesions can alleviate pain and improve fertility, complete resection of the lesions is difficult and often tissue remains in the body or lesions come back, causing women to need to undergo multiple surgeries.

Outlook: a silver lining for endometriosis treatment?

Better monitoring of endometriosis with mHealth

Progress is occuring with mobile Health (mHealth) solutions being developed to support patients with endometriosis. Apps such as Phendo or MyEndoApp are designed to support pain management and follow ups for patients with endometriosis. Some apps even collect anonymous patient data, streamlining research in the field.

New treatment opportunities for endometriosis

Another interesting new approach emerging to support endometriosis patients, is the use of dye-loaded nanoparticles, currently being tested in in-vitro studies by researchers at Oregon State University. This technology, should it prove effective in humans, could serve two needs currently persisting in endometriosis care as an imaging tool and a removal technique. The fluorescent particles can help detect the lesions and, using photothermal ablation, the lesions can be destroyed completely. While this approach is still very novel and will need lots of further development before entering the market, it gives hope to many women all over the world who have finally started to be heard.

Even though such advancements are being made, there is still a long way to go to increase awareness and recognition, and to eventually create new treatment opportunities for this disease that affects the quality of life of so many women around the world. Celebrities and endometriosis advocates have played a substantial part in raising awareness and encouraging other women to speak up about their struggles and instigate a paradigm shift to empower women to talk about menstrual and reproductive health. Alcimed will keep you updated on how the field develops and which innovations are emerging to close this gap and medical bias towards women. Discover our achievements in technology scouting and improvement of patient pathway. 

About the author
Alina, Consultant in Alcimed’s Healthcare team in Germany