Endo Pain: How To Advocate For Yourself

We’re often told that period pain is ‘normal’ and something we should ‘put up with’. Whilst a little light cramping isn’t something to be concerned about, extreme period pain that impacts your quality of life is a sign from your body that something is wrong.
Adam Hamdi
Written by

Coni Longden-Jefferson

We’re often told that period pain is ‘normal’ and something we should ‘put up with’. Whilst a little light cramping isn’t something to be concerned about, extreme period pain that impacts your quality of life is a sign from your body that something is wrong - and could be a symptom of conditions like endometriosis. 

Sadly, even endo warriors who suffer the most extreme symptoms can struggle to get the support they need - or be believed when reporting their pain. A recent survey of the endometriosis community found that 90% of people living with the condition have been dismissed and disbelieved when reporting their pain. Another survey by Endometriosis UK found that 62% of endo warriors put off going to see their doctor as they felt their symptoms wouldn’t be taken seriously. 

Key Takeaways


  • If you feel like you’re pain is not being believed, you’re not alone. This is very common for people living with a condition like endo
  • Keeping a symptom log can be one of the best ways to advocate for yourself at the doctor’s 
  • Taking photos or videos of what you’re going through can also be really helpful 
  • You’re always within your rights to take someone with you to your appointments and ask for a second opinion if you’re not happy with your doctor's response

Why period pain is so often dismissed

Sadly, these stats are hardly surprising. For centuries women have been battling against a healthcare system that was not set up for them and which consistently minimises anything to do with menstrual health. Did you know that back in ancient Greece they would attribute women being ‘hysterical’ to their ‘wandering wombs’!? Even now, there is still a huge lack of understanding around conditions like endometriosis, which is why people living with the condition are so often misdiagnosed with conditions like IBS, or simply dismissed as having ‘just’ a painful period. 

Even when we take menstrual health out of the equation, women are still less likely to be believed when reporting pain. Research has shown that women are more likely to be misdiagnosed when having a heart attack! 


Advice on how to advocate for yourself at the doctors

It may not be easy to make your pain be believed, but there are some ways that you can empower yourself to have constructive conversations with your healthcare team. 


Keep a symptoms journal


This is one of the biggest pieces of advice from the endometriosis community. Keeping a diary of your symptoms not only gives your doctor a written log of everything you have been experiencing, but it also will show patterns in your symptoms. It means that you don’t have to depend on your memory, or your ability to accurately articulate what you’ve been going through to get across the severity of your symptoms. If you only have a short time with your doctor, giving them a detailed symptom log may be more effective than trying to explain, especially if you are currently in pain or discomfort. 


Use a pain scale


Pain is very hard to quantify, which is why it’s so often hard to articulate. However, in the medical profession, they often do refer to a numbered pain scale to help people explain what they are feeling. This might be from 0 to 5 or from 0 to 10 - with zero being ‘no pain’ and 10 being ‘the worst pain you have ever experienced’. You could use this scale in your symptom journal or when speaking to a doctor. 

Take videos and pictures


For some people, capturing the content of their worst endo experiences and then sharing it with others is not right for them. However, if you feel comfortable taking photos of your bloated stomach or videos of you going through a painful flare-up, this can showcase the real-life impact of your symptoms to your doctor - and can be pretty hard to ignore. 


Utilise other people’s stories

If you don’t feel comfortable capturing your content - you could always share content you’[ve found from someone else. There are many incredible endo warriors online who are sharing the truth of what an endo flare-up looks like, and if you see a video that accurately reflects your own experience, there is no harm in sharing that with your medical team to illustrate your symptoms. It doesn’t even have to be video content to have an impact. If you find an article or podcast that accurately describes your symptoms, bring them as a resource to your next appointment. 


Take someone with you to your appointments

Something else you can bring to an appointment is a supportive friend, partner or family member. Of course, in an ideal world, your doctor would take your word for it when you’re describing your pain, but the truth is sometimes two voices are better than one. If there is someone who has witnessed your symptoms and is happy to advocate for you, there is no harm in taking them along to bolster your claims - as well as offering you emotional support. 


Take a second opinion - or ask for one!


It can also be very powerful to take written recommendations from other healthcare professionals - whether it’s a nutritionist or a physical therapist. Again, your doctor should know that you are the expert on your own body, but if you have experts in your life who know what you are going through - utilise them. Also, never forget that if you aren’t happy with the response from your doctor, you are well within your rights to ask for a second opinion. We’ve sadly heard stories of endo warriors who have had to seek the opinions of more than 6 doctors before they got a diagnosis and referral, so keep fighting until you get the support you need. 

We’re proud that our Myoovi kit significantly reduces pain for 92% of our endo customers - but just because we can minimise the pain physically, does not mean we should minimise the experience of people going through chronic period pain. 

If you are struggling with extremely period pain, we hope you can find the confidence to advocate for yourself and get the support you need.