The undiscovered disease: Endometriosis

By Katharina

The undiscovered disease: Endometriosis

Painful periods, back and leg pain, pain during sex, nausea - those are only a few symptoms Endometriosis may cause. One in ten people with periods suffer from this disease. Nevertheless it usually takes 10-12 years until it is diagnosed correctly. To draw attention to the disease, March is Endometriosis Awareness Month.

First things first: What is Endometriosis? 

Endometriosis is a chronic inflammatory disease of the uterus. Cells similar to that of the uterus grow outside the uterus. People of all ages can be affected and the intensity of the symptoms varies greatly. Typical symptoms are developed by 60-70 % of patients. Some sufferers have great limitations in their daily lives, while other patients hardly notice the symptoms. Those symptoms can include heavy painful periods, painful bowel movement, chronic fatigue, back and leg pain and painful sex. Endometriosis can also lead to difficulties getting pregnant and can cause infertility. So far, there is no treatment to cure Endometriosis, but there is a range of options to increase the quality of life of patients.

Am I alone in this?

Good news: Not at all! As already mentioned, one in ten women suffer from this disease. To spread awareness, many people have already joined to make clear: We need to talk about Endometriosis and you are not alone :-)

One of these Endometriosis activists is Susan Sarandon, known from the series friends, who drew applause when she made clear that pain is never ok: 

“When all you know is pain you don’t know that that is not normal.  It is not a woman’s lot to suffer, even if we’ve been raised that way. It is not OK to miss a part of your life because of pain and excessive bleeding. It is not OK to be bed-ridden for two-to-three days a month It is not OK to pain during sex. It is not OK to have major bloating or nausea”

She stressed that patients should not take no for an answer when seeking help. More and more well-known sufferers are talking about Endometriosis to advocate for the improvement of medical care and appropriate therapy. 

Endometriosis and your period 

Uff, Endometriosis and menstruation is a team that can make it really hard for you! Luckily, we have your back. Heat pads, tea and painkillers are your friends during your period, especially when Endometriosis is leading to heavier and more painful bleedings. The Phia Cup is also a good addition in your wellbeing package! Experiencing vaginal pain, some sufferers might be skeptical whether menstrual cups are a good fit or not. For this reason we recommend you to try out if the Phia Cup is a good solution for you. If you have any questions, we are happy to help you. 

These Symptoms are familiar to me - what should I do? 

If you have severe pain during your period, or experience other symptoms indicating Endometriosis, we recommend that you see your gynecologist. The diagnosis of endometriosis can take a long time and maybe your doctor does not even know the disease. Therefore, we would like to encourage you: listen to your body, stand up for yourself, and keep looking for the right doctor until you have found someone who takes you and your symptoms seriously. 

Moreover - knowledge is key! There are many books, blogs, podcasts and talks about Endometriosis. The better you get to know the disease and your body, the better you will be able to deal with it. At the end of the article, we have a few recommendations for you to get even more involved in the topic.

How to help Endometriosis sufferers 

Endometriosis can be very disruptive to the lives of those affected and can lead to cancelling plans, pain and life changes. If you are wondering how you can help an affected friend we have a few tips for you. 

  • Ask what does her good 

She is the expert to her body and she knows best what is particularly good for her at the moment. A cup of tea, a phone call, or simply being alone.

  • Don’t blame her for cancelling plans 

The pain comes and goes, therefore Endometriosis sufferers may cancel your tea-date or your visit to the cinema short notice. This has nothing to do with you, so try to not take it personally and try to be as sensitive and understanding as possible. 

  • Take her serious 

Many patients know very well the feeling of not being taken seriously. It's wonderful to have friends who take you seriously, accompany you to appointments and show understanding when something doesn't go quite right. <3

When helping Endometriosis sufferers or patients with other (chronic) diseases one thing is important: communication. If you talk openly with each other, you can learn about each other's wants and needs and support each other well. 

Are you suffering from Endometriosis? We have some tips for you! 

Tips for a more pleasant period 

  • Eat anti-inflammatory foods 

Since endometriosis is an inflammatory disease, it makes sense to pay attention to your diet. Put some ginger or turmeric in your water, and make sure to eat fresh fruits and vegetables! There are many books and articles on anti-inflammatory diets which are worth a look :-). 

  • Heat is your friend! 

Heating pads can help relay your muscles, your nerves and your mind. 

  • Trustworthy period products

Make sure to find pleasant period products, such as the menstrual cup by Phia, so that you don’t have to worry about leakages during your period.

For more tips and tricks on how to make your period more pleasant, we recommend reading our friend Charleen's blog post. She is an Endometriosis sufferer and shares first hand information and her experiences.

Exciting books and podcasts 

The Doctor Will See You Now: Recognizing and Treating Endometriosis
by Tamer Seckin 

Beating Endo: How to Reclaim Your Life from Endometriosis
by Iris Kerin Orbuch, Amy Stein, Harper Wave

The Cycle. Endometriosis Podcast
Podcast by Melissa Boudreau

Not defined by Endo 
Podcast by Teniola Ogunro  

Blog post by Charleen “My Subtenant Mrs. Endo

Endometriosis Center

Endometriosis Center The Hague 


You got this! 

Endometriosis is a bad disease, but there are good ways to deal with it. We encourage you to seek help if you are worried about endometriosis or any other disease. You are not alone

Note: This blog post is not a substitute for a medical examination. If you are concerned about endometriosis or have other pain, we recommend that you see a doctor.