“A lot of women normalize the pain they experience during their period. And we are quick to judge those who express their pain verbally.”
Can you tell us what you’re raising awareness for in this campaign?
Endometriosis, a chronical illness that effects a lot of women (1 in 10) however many have never heard of the word endometriosis before. In my inner circle I informed mostly all female friends, family members and coworkers. Only one person knew what it was as she suffers from this herself.
Unfortunately, I discovered that I had endometriosis due to a cyst on my right ovarian. In my specific case the cysts ruptured during my period.
I like to tell you more about my personal story and experience with endometriosis. During a phone call in 2016 while I was on my period, I noticed that my hands suddenly started to shake, and I was sweating heavily. I informed my best friend on that phone call that I wasn’t feeling well and that I was in a lot of pain. A pain I’ve never ever felt before and I started to panic. She asked if there was anything that she could do, or if she needed to call an ambulance. Eventually I fainted and woke up laying on the ground.
After the accident I phoned the doctor’s office and explained what happened. His assistant asked me what my symptoms were and what happened. She told me that my symptoms are related to period cramps, and she ended the conversation. When she hung up, I called back and explained that I wanted to see my doctor. She refused. I called back once again and another assistant, who I have known since my teenage years, answered the phone and asked what happened. I explained that I wasn’t feeling well, got emotional and started crying. I told her that something is wrong, and that I don’t know what is happening exactly, but that I’m really scared and need help.
She informed me that she would make an appointment for me to come and see my doctor. When I arrived at the appointment a female doctor stood in for my regular male doctor, as he was on holiday. I felt relieved as I felt a female doctor could better relate to my story. After I informed her about my symptoms, she laughed and told me that this is normal and part of having a period. I told her that I started having my period at the age of 9 and I’m familiar with the ‘normal’ symptoms. I was 25 years old at that time and never experienced anything like this pain before. I’ve asked for a referral to see a gynaecologist. She refused.
The following Monday I went back to university. As my fellow students asked where I’ve been, I told them what happened. A female student overheard our conversion and asked me if she could talk to me in private after class, where she told me about endometriosis. She was experiencing the same symptoms and was on her own journey seeking answers about this serious pain during her period. I looked it up online and realized that most of the symptoms are exactly the same as to what I’ve been experiencing during my periods. I was convinced I suffer from endometriosis! I made another appointment saw the same female doctor and she informed me that she never heard of endometriosis before. I got upset and informed her that I will wait to make an appointment to see my own doctor after his holiday.
My regular (male) doctor did an internal examination and explained that he could feel something on the right side near my ovary (as he was feeling the pelvic area from the outside as well). He referred me to make an ultrasound scan ASAP. I will never forget what happened after that! During the scan we saw a huge (15 cm) round black circle. The lady at the hospital informed me that this is probably an ovarian cyst. To be sure, and to understand if this is related to endometriosis or perhaps cancer, I needed to see a gynaecologist.
This is where my journey started. I have spoken to 15 doctors in total, countless medical appointments & 5 MRI. Sharing my story OVER and OVER again. Experimenting with different medication, seeing a pain specialist, urologist, radiologist…..I eventually had a 4-hour surgery!
What made you want to share your story and start raising awareness for Endometriosis?
After I was diagnosed, I quickly realized that there was hardly any information about endometriosis in the Netherlands. Second of all, it seems that most of the doctors had difficulty recognizing the symptoms. As the spectrum of symptoms verify, it is extremely difficult to get diagnosed.
So I decided to start a project called “one in ten women”. It was, and still is, my mission to raise awareness to prevent young girls & women to get diagnosed at a stage where it is too late. Simply by sharing your story.
What do you think is the biggest challenge for those suffering from Endometriosis right now? And how do you think it can best be addressed?
In general, we do not talk about periods. For some reason there is a stigma when it comes to discussing menstrual health. Even though most women experience periods in their life, there is little awareness and knowledge about endometriosis, and how it can negatively impact your life. Meaning that many of us cannot emphasize the level of pain that we experience.
In general, there is a lack of research on women’s health. As there is hardly any information about endometriosis. Speculations seem to be the answer for now. This is why it’s important to talk about Endometriosis, to inform and educate others correctly.
What is one myth or misconception about Endometriosis that you want to dispel?
As this is related to your period, and most of us suffer from period pain. I noticed that a lot of women normalize the pain they experience during their period. And we are quick to judge those who express their pain verbally. I my specific case I could not get out of bed for 7 days, or managed to do my daily activities (cooking, cleaning). When you experience a level of pain that impacts your daily life. We should not feel ashamed to discuss this among others!
What do you hope to achieve by raising awareness for Endometriosis?
Let’s start using the term Endometriosis in our daily lives. If society is aware of this disease on a larger scale this will help others to get diagnosed. For the long term, my aim is to develop a curriculum for primary schools (in cooperation with the GGD), and by law making the government and de Tweede Kamer responsible for this curriculum. Unfortunately, they are not obliged to develop a course focused on Endometriosis or menstrual health. I do hope they will follow in the footsteps of other EU countries such as the UK and Spain. If it is not possible to develop this on a larger national scale, perhaps I can make sure that our voices are heard locally. I’m employed at the municipality of Amsterdam, so I might start there.
What is an important lesson you’ve learned on your journey so far?
Do not take no for an answer! I had been informed that nothing was wrong, and perhaps it was all in my head. Luckily, I did not give up and found a doctor who was willing to listen and eager to learn. Even after not being able to see anything on the MRI scans, she kept informing me that she believed that I was suffering from endometriosis. Because the symptoms that I described matched the symptoms of endometriosis.
Listen to your body and try to connect the dots! If person A does not have an answer, ask a different doctor for a second opinion. Having the right doctor also means you can emotionally connect to have a healthy and trusted relationship. It is like finding the right partner. The day that I had surgery I found out that I had an extremely aggressive form of endometriosis. My doctor even informed me that this was the most extreme form that she has seen in her career.
What advice would you give to people who relate to your story or cause?
Hang in there, don’t give up and contribute to spreading awareness where you can! Keep in mind that there were plenty of pioneers and game changers before us, to make sure that we can live the life that we aspire to whether it is related to our health, gender, or handicap. Perhaps we will not see the impact or change we stand up for in our lifetime, but I want to make sure that our future generation will have proper education in primary school regarding this topic. Let us fight for a special law which will help us navigate our daily lives with Endometriosis and protects us from social isolation, period stigma, depression, and anxiety!
What advice would you give to people who want to contribute to a solution or better circumstance?
Having a period doesn’t mean that you can relate to someone who suffers from Endometriosis. There were/are plenty of times that I was informed by female doctors, relatives, friends, or coworkers that they can relate. But this level of pain can’t be compared to something you can solve with paracetamol or ibuprofen. Keep in mind that there is a lack of research on women’s health. We hardly talk about menstrual health. There is a societal stigma that we all experience the same symptoms during our period. This leads to people with extreme symptoms, like myself, not speaking about it in public.
Can you recommend something that people can do to help your mission?
Again, once people spread the word, they can get familiar with the word and the symptoms, this might prevent people like myself getting diagnosed too late. Start the conversation, or take the initiative to contact a platform or organization to start the conversation!
Want to connect with Vanity Holband? Reach out @one.in.ten.women on Instagram.