Frequently asked questions
Our platform is for womxn who may be/are certainly experiencing symptoms of endometriosis. We use the term ‘womxn’ to be inclusive of non-binary and trans persons who can also face endometriosis (see our LGBTQIA+ Resource Hub).
Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of the uterus grows outside the uterus. Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial-like tissue may be found beyond the area where pelvic organs are located. Endometriosis can cause pain — sometimes severe — especially during menstrual periods. It can cause several dysfunctions in the body like exhaustion, digestive issues and fertility issues, among many others.
Anyone who menstruates or once menstruated can experience endometriosis, and at any age. It is however, a severely under-diagnosed and under-researched disease, with the current statistic stating that 1 in every 10 women have endometriosis. You can read more about it here: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
There’s a large gender data gap, especially when it comes to womxn’s health. This is often referred to as the ‘gender pain gap’. When womxn are underrepresented in medical research, it automatically puts womxn at a disadvantage when being diagnosed or treated for diseases. Additionally, conditions that disproportionately affect womxn have often been deemed unworthy of research funding and time.
This has been changing, albeit slowly. Womxn continue to be the victims of ‘medical gaslighting’, a phenomenon wherein they’re told that their pain is normal or psychological, rather than a matter of concern. This is especially true in the context of endometriosis.
You can register here with your email and a chosen password. You will be asked to choose a username, preferably an alias – find more about this in the Data FAQs below. After signing up, you will be able to browse a lighter version of the platform. For full access, you will be asked to fill your profile with our Endo survey, wherein you will be asked to answer questions about your symptoms, diagnosis, treatments, etc. There are questions where you can select from multiple answers, while other questions are open text fields where you can share your experience in your own words. Some answers are required while others are optional and can be filled in later. You can edit your answers later on your profile.
Once you’re signed up and have created your profile, you can access the profiles of all our users and see their endo-journeys. We make recommendations on users who have similar symptoms or endo-journeys to you, so you can learn from their experience, learn more about that here. We also show you all the treatments that have been tried by patients with endometriosis, alongside reviews of each treatment.