Because so many have still never heard of endometriosis, many often find themselves having to explain or even justify their disease at work, among friends and family, to medical professionals or even with complete strangers.
We asked those with endometriosis about their experiences, here’s what they had to say.
“I often feel as though I have to explain my condition to people to justify the pain I feel every day and why I cannot always perform to my capacity, which can take a toll on work and friendships as this can also affect my mental state. I often find it frustrating how there is a lack of knowledge and awareness of endometriosis as I feel invalidated and misunderstood by others.” – Grace
"It feels like a never-ending cycle of explanation—constantly having to justify your pain, your fatigue, your limitations. Every day, you're met with confusion, skepticism, or well-intended but misplaced advice from family, friends, and employers who don’t fully understand what endometriosis entails. You find yourself repeatedly describing the intensity of your symptoms, why they fluctuate, and how they impact your daily life. With family and friends, you try to help them grasp that this isn’t "just a bad period"—that it’s a chronic condition affecting more than just your reproductive system. At work, the explanations become even more exhausting. You have to justify time off, accommodations, or why you're not performing at your usual level, all while fearing judgment or repercussions." – Becky
"I have to justify my endometriosis so frequently, both at work and with my friends. It often leaves me bed bound and unable to do anything. It is emotionally draining." – Em
"I’m extremely lucky to have such an amazing family who are incredibly supportive. I’ve not had good experiences in the past with medical professionals but it seems now that I have my diagnosis that I am starting to be listened to. It just took that one doctor to actually hear what I was going through and realise that what I was suffering with could be endometriosis and that I needed investigative surgery - I’ll be forever grateful to this person! Some people I’ve spoken to do still have the belief that it’s just a bad period but I’m in pain daily and often even struggle to walk when I’m having a flare up. I’m so grateful to Endometriosis UK for raising awareness of this condition." – Amy
"All the time, I have to justify myself to friends, family, colleagues, and even medical professionals who should know better. The worst part is the disbelief, the misinformation, and the unsolicited comments like: 'But you don’t look sick or Have you tried yoga?' They make me feel invisible, as if my pain isn’t valid because it’s not visible
The constant need to justify my endometriosis is exhausting. I shouldn’t have to fight this hard to be heard and believed" – Deepti
"At the beginning of my professional career, I had a male manager who couldn't understand why I would need to go home or stay home when I had my period. This manager would question why I was leaving early at a similar time each month and this made me feel incredibly invigilated and drove me to staying at work, uncomfortable, in order to avoid scrutiny.
Sadly, as a result of personal pressure, I often feel guilty in cancelling or rescheduling social plans as a result of endometriosis pain, worried about what friends might think. I have instilled expectations in myself to 'push through' pain in order to leave my personal life uninterrupted but this has only resulted in further fatigue and pain as I haven't allowed myself the space to rest." – Lily
Wider public understand of endometriosis will help to ensure frustrating experiences like these become a thing of the past.
Take action today and learn more about endometriosis and spread the word. You could…
- Watch our Endometriosis Action Month 2025 video to learn more about the disease and its impact
- Register for ‘Endometriosis Explained’ - a free webinar about endometriosis with a Q&A session
- Invite your local political representative to take action by joining us at parliamentary events throughout March, ensuring they understand the impact of endometriosis
- Download our social media resources to spread the word.
