By Sarah Knight, Head of Healthcare Technology at 42T
Endometriosis is a condition which affects roughly 10% of women and girls of reproductive age globally. Endometriosis happens when tissue normally found inside the uterus grows in other parts of the body. It can attach to ovaries, fallopian tubes, the exterior of the uterus, the bowel or other internal parts.
This tissue behaves the same way all endometrial tissue does - it breaks down and bleeds with each menstrual cycle. Because this tissue is growing in areas it shouldn’t be, it has no way of exiting the body and becomes trapped. This can cause surrounding tissue to become irritated and eventually develop scar tissue.
Some symptoms include severe abdominal pain, pain when going to the toilet, pain during or after sex, heavy periods and lower back pain. Endometriosis can cause severe pain and infertility, but diagnosis and treatment of the condition is not well developed. Furthermore, the vast majority of women suffering from the condition are often dismissed when seeking professional help and support.
Endometriosis is a terrible and problematic condition for a number of reasons. Firstly, nobody really knows what causes it. Its exact origins are thought to be multi-factor and include things such as retrograde menstruation, cellular metaplasia and stem cells giving rise to the condition which then spreads through the body via lymphatic vessels. Other theories include that the condition could be hereditary with cells being present from birth, or even a fault in the general immune system.
Secondly, there is little to no correlation between the extent of endometrial tissue or location of the tissue and the severity and duration of endometriosis symptoms. Some people with large and visible lesions will have mild-to-no symptoms. Others with lesions that are fewer or small in size may suffer from chronic pain.
These two factors combined lead to the third problem: it’s incredibly difficult to diagnose. Endometriosis can cause chronic pain. But most women will get some pain with their menstrual periods. So how do you determine ‘normal’ pain and ‘abnormal’ pain? Women are frequently ignored by healthcare professionals and symptoms are dismissed as ‘being normal’. Although several screening tools and tests have been explored, none are currently validated to accurately identify or predict individuals or population groups most likely to have the condition.
A laparoscopy can be performed to look for signs of endometriosis, but as mentioned, some people may only have a very small number of small lesions. Diagnosis is such an issue that research shows that on average it takes women 7.5 years to receive a clinical diagnosis and some may never receive confirmation of having the condition.
Sometimes the first and only symptom of endometriosis is trouble getting pregnant. Infertility affects 33% of women with the disease and, much like many aspects of endometriosis, no one really knows why it causes infertility.
Treatment for endometriosis is very limited. Women are usually advised by their healthcare professional to take over-the-counter pain medication. These drugs can temporarily relieve the pain and cramping, treating the symptoms but not the underlying health condition.
Another treatment is to take birth control pills to help manage the levels of oestrogen and progestogen which help make periods shorter and lighter. Birth control proves problematic for two reasons. Firstly, many birth control pills can have severe adverse side-effects and are not always suitable for long term use. Second, if you are trying to get pregnant which is already significantly more challenging in women with endometriosis, birth control pills will obviously prevent this.
Some women may be prescribed other hormone therapies which could help alleviate symptoms - again, without treating the underlying health condition. Unfortunately, hormone treatments can cause a host of adverse effects. These can include hot flushes, vaginal dryness, fatigue, mood changes and a decrease in bone density. Some women may also experience unwanted aesthetical side effects such as weight gain, smaller breasts, acne, facial hair growth and a deeper voice.
In some cases, surgery is also an option to remove visible growths or adhesions. Unfortunately, it’s reported than 45% of women who have surgery have their symptoms return. The most extreme form of treatment is a hysterectomy. But even then, endometriosis still recurs for about 15% of women who have had their uterus and ovaries removed.
Endometriosis is a common condition that can affect all aspects of a sufferer’s life. So there are all kinds of opportunities for innovative technologies to make a real difference to patients’ health and wellbeing. Possibilities include devices or apps to monitor symptoms, alleviate pain, or aid fertility. Given the struggles that many women have with lengthy diagnosis and treatment pathways, technologies that enable sufferers to take control of their condition could be a huge opportunity.
It is important to understand the needs and lifestyles of the women who will use or be treated by them when developing new technologies. Endometriosis sufferers are diverse and the condition affects them in a wide range of ways. They can be at different life stages and have different lifestyles and priorities. Truly understanding their needs and aspirations will be valuable in developing products with a high level of impact and market success.
And endometriosis is a condition to be aware of even if it’s not what your medical device directly targets or treats. The condition affects a tenth of all females from their teens to midlife – who use all kinds of products. Consider, for example, endometriosis sufferers when developing reproductive health devices and apps - they are a big portion of your target market. Aim to gain an understanding of how this condition could affect how your device is used, or its effectiveness. If appropriate, pass relevant information on to users so that they can make informed decisions about their own health or that of their patients.
The conversation surrounding endometriosis is often bleak. Organisations such as the World Health Organisation (WHO), the World Endometriosis Society and the NIHR research institute in the UK are driving increased funding for research to develop new treatments.
We can take inspiration from some other women’s health issues that have been similarly neglected in the past such as menopause and period pain.
Read 'Women's health: data bias in healthcare'
If you would like to find out more please contact Sarah:
answers@42T.com | +44 (0)1480 302700 | Sarah Knight | LinkedIn
Sarah is a chartered engineer (IMechE). She holds an honours degree in Biomedical Engineering and a Master’s degree in Mechanical Engineering from Cambridge University.
Sarah is an experienced project manager with particular expertise in medical device development. She has guided products through all stages of development. Including from innovative concepts to detailed design, regulatory approval, and troubleshooting in manufacture.