Endometriosis: “It took me 6 years to get a diagnosis!”

Hello Sterenn, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a little bit about yourself? 

Hello Carenity, thank you for giving me the floor to talk about endometriosis. My name is Sterenn, I'm 21 years old and I'm studying psychology. I live in the Paris region with my parents and my dog. I am from Brittany, and I am very attached to my region. I could spend days watching and listening to the sea breaking on the rocks, taking pictures of it, walking on the beach with my dog. Did I tell you that I love my dog very much? 

You are living with endometriosis. Could you tell us what the first signs of the disease were? What were the pain and symptoms your endometriosis caused?  

My first pains started at the same time as my first period, when I was 13. As I was not yet very regular, I was able to cope with them. However, the pain became more severe month after month. 

I started to feel unwell while standing on public transport, and nausea also started. 

I started seeing a doctor for these problems, who first prescribed me the pill to regulate and reduce my period pains. This didn't help much.

Then, I started missing more and more days of school. My last year of high school arrived, and I would only be present in class 3 weeks out of 4, spending my period week in my bed with violent pelvic pain, nausea, vomiting, pain during bowel movements, fainting, extreme fatigue and digestive problems. Having intercourse was also painful. 

No medication could help me. Later on, I had chronic pelvic pain even on the pill, neuropathic pain, a feeling of tightness in my chest, shortness of breath, pain in my right shoulder, chronic fatigue and severe migraines.

Endometriosis can be difficult to diagnose. How long did it take for you to get a diagnosis? Did you receive all the information you needed to understand endometriosis? Did you do any research on your own? Where did you turn? 

It took me 6 years to get a diagnosis by MRI. I went to see my GP, 2 conventional gynaecologists, 2 endometriosis specialists, a nutritionist, a psychologist, I had 2 ultrasounds, one of which was endovaginal, and 3 MRIs before I was diagnosed.  

Only the last gynaecologist specialising in endometriosis had any real information on endometriosis, all the others were not very knowledgeable and that's what made me lose a lot of time with my diagnosis.  

In the meantime, I mainly looked on the internet on endometriosis foundation websites. I couldn't keep myself from comparing my symptoms to those I saw listed on these websites. I couldn't convince myself that what I had was "unimportant" like the first "specialist" gynaecologist I saw had said. She had told me that my symptoms were created by my pill and my diet (which was a completely normal diet validated by a nutritionist, mind you), and I couldn't believe her. 

What care are you currently receiving? Are you satisfied with it? What treatments or medications have you undergone or taken? What do you think of them?  

Today I am treated by a gynaecologist specialising in endometriosis, a pain specialist, an osteopath, an acupuncturist, a psychologist and a hypnotist.  

I saw a dietician for 5 months to help adopt an anti-inflammatory diet to reduce my pain and I took anti-epileptic drugs for neuropathic pain as well as antidepressants which I still take for the same reasons and continuous hormone treatment.  

At home I use raspberry leaf tea, CBD, electro-stimulation devices, essential oils, a hot water bottle and painkillers/anti-inflammatories when I have little choice.

Today, I'm still in pain 24/7, despite everything I do to try to get better, but I have learned to manage my pain and can handle it much better than before.  

How has endometriosis impacted your personal life and your life as a student? 

Endometriosis has had a big impact on my education. After my rather chaotic final year of high school, I went on to a prep programme to enter into engineering school.  

Unfortunately, I had to withdraw at the beginning of my second semester because the pain was becoming increasingly unbearable, and I had to miss classes. This, combined with my anxiety, made me break down mentally.

My pain became a daily occurrence, and it was at this point that I decided to take active control of my own medical case. At the same time, I enrolled at university in engineering science, and I could only go to class about 3 days out of 5.  

I was beginning to feel physically unfit, I was getting very tired, sitting and standing for long periods was unbearable, and I could no longer attend lectures in lecture halls. I couldn't attend any classes in the second semester because I couldn't move around. I would later be diagnosed this year but wouldn't get to experience my first year of university. 

I decided to take a year off to focus on my health, to try and get better so that I could start again the following year. I thought about my future and asked myself what I would like to do if my condition stabilised. I saw myself in a job where I can manage my own schedule, work from home and help others.  

Having always been interested in psychology, I signed up for a distance learning course to see if I would like it and to use it as a springboard to enrol at university the following year. Now I'm back in my first year of psychology course online, so I'm working from home and it's the best option I could find for me.  

You're active on social media under the username Mon.Endo ("My.Endo"). What topics do you cover? Why did you decide to talk about endometriosis on Instagram?

On social media, especially on Instagram, I raise awareness about endometriosis, share information, tips, testimonials from endometriosis patients, my story, and give support to everyone. 

What message would you like to share to your followers? What feedback to you get from them? 

My main goal is to spread the word about endometriosis. My aim is that if someone who doesn't know about endometriosis comes across the account, they can find the key information and already have a good knowledge base. I want to give them hope and support in their journey.  

From what I hear, I believe my account helps many and I am delighted when I receive messages of thanks, I am always very touched. 

What do you think social media and other health forums bring to patients managing chronic illness? Do you think it's important to be informed about your health? If so, why? 

Social media and other health forums provide an enormous amount of information that is rarely available in a doctor's surgery or even in a traditional gynaecologist's office. Informed patients are able to have real discussions with health professionals, understand what they are being told, what is being proposed, have an opinion on certain subjects and control their health.

Doctors today need to collaborate with the patient on their journey and no longer have an "I order, you execute" relationship as was the case many years ago. 

Did you know about Carenity or other patient exchange platforms? What do you think of them?

I knew of a few health forums, and I think they are important spaces for patients with any condition. Having the opportunity to communicate with other people with the same illness as you is very rewarding, provides support, reassurance and gives you a voice. 

What advice would you share with other Carenity members living with endometriosis?

Listen to body! Pain is a warning signal, it's not normal to feel pain, even during your period. It' your body and you know better than anyone what is going on. Don't hesitate to go and see professionals specialised in endometriosis and to have your examinations carried out by radiologists who are also specialists and who are trained to see endometriosis lesions (note that it is possible not to see endometriosis on the images). If you don't feel confident or that you're being listened to by a health professional, don't hesitate to look for someone else. 

Any final thoughts?

Thanks again to Carenity and I wish you all the best in your journey, never give up, you are strong! If you need anything, don't hesitate to contact me on Instagram (@mon.endo).