Do you suspect endometriosis? 5 women share their experiences
March is International Endometriosis Awareness Month, and Flow spoke to five women about their personal experiences with the often overlooked disease.
The quick summary first: Endometriosis is a chronic condition in which tissue similar to the lining of the uterus is found outside the uterus. It can cause severe pain – especially during menstruation – but also pain during sex, fatigue and fertility problems.
1 in 10 women of childbearing age have endometriosis - unfortunately only 2% are currently diagnosed, and it takes an average of 5-7 years from the time you see a doctor with the first symptom to being diagnosed. That's why it's important that you insist on getting diagnosed and seek support from both doctors and communities.
👉 If you want to know more about what endometriosis is, read the article here.
At Flow, we wanted to give space to the experiences that don't always make it into medical books. That's why we asked five women:
“If you had to give one piece of advice to others who suspect they might have endometriosis – what would it be?”
You will see three pieces of advice in particular repeated:
- Take your pain seriously
- Seek help from a gynecologist
- Be persistent if you don't feel taken seriously.
Really enjoy.
The article is written by Emma Libner, author, vagina activist and sexologist.
Go to the doctor – even if you are “just” in doubt
Many of us have grown up with a narrative that menstruation hurts. That pain during sex is something you just have to live with. Yes, that it's generally just a little painful to be born in a female body.
But it doesn't have to be that way.
One of those who had her pain swept under the rug for many years is Henriette (36) . She was first diagnosed with endometriosis after having severe menstrual pain since her first period at the age of 13.
“Like so many others, I was just told that being a woman and having my period was supposed to hurt. But you shouldn't put up with being in so much pain that you can't manage your daily life on regular painkillers.”
Henriette herself has experienced sitting in the emergency room with what later turned out to be a ruptured cyst caused by endometriosis. She clearly remembers the feeling that something was completely wrong – without it being taken seriously right away.
Therefore, her advice to other women is simple:
“Request a referral to a gynecologist. And if it turns out you have endometriosis, receive symptomatic treatment as early as possible to prevent the disease from progressing and becoming more painful than it already is.”
Talk to someone who understands you.
A recurring experience among several of the women we spoke to is the feeling of not being taken seriously in the healthcare system.
For Anna (22) , the lack of understanding has been almost as hard as the pain.
“It can be fucking hard not to feel understood. It hurts almost as much as the pain itself to have to sit and explain yourself and not be met with understanding.”
Her advice is therefore to find someone who can support you – even when you have to talk to the doctor.
“Start by telling someone close to you, someone you feel comfortable with. And bring that person with you when you go to the doctor for the first time so they can support you. I even brought my dad with me, and it was so nice, because then at least there was someone in the room who understood me.”
Another place where you can find support is in communities with others living with the disease.
For Tine (35) , the patient association Endometriosis Community has been an important support.
“The Endometriosis Community has been a great help to me. They also have a lot of knowledge that can help you further if you don't know where to start.”
Tine herself was diagnosed at the age of 21 after almost a decade of severe pain.
Be insistent and persistent
Although endometriosis is a relatively common disease, it is still underdiagnosed. Many people find that it takes years before they receive a diagnosis.
Research indicates that it takes an average of 5–7 years to be diagnosed with endometriosis.
One of those who knows the waiting time all too well is Kamilla (41) .
It took 23 years from the time she first went to the doctor with severe pain until she was diagnosed. It happened by chance during a scan in connection with an abortion.
Kamilla went to the doctor many times in the years leading up to the diagnosis.
Therefore, her advice is clear:
“Often you have to insist and go to the doctor many times to get it checked out. So insist on being referred to a specialist who can scan you for endometriosis – and do it several times if necessary.”
When pain becomes normalized
One of the biggest challenges with endometriosis is that the symptoms often become normalized.
But severe menstrual pain is not something you just have to learn to live with.
If pain affects your everyday life, your ability to work, study or be social, it may be a sign that something should be investigated further.
Talking openly about menstruation and pain is therefore an important step towards earlier diagnosis and better treatment.
How do you know if you might have endometriosis?
Endometriosis can manifest itself in many ways, but some of the most common symptoms are severe menstrual pain, pain during sex, chronic pelvic pain, and fatigue. For some, the pain also affects work, study, or social activities.
If your pain is so severe that regular painkillers don't help, or if your period makes it difficult to function in everyday life, it may be a good idea to talk to your doctor or a gynecologist. Unfortunately, many women with endometriosis find that it can take many years before a diagnosis is made.
Therefore, it may be important to take your symptoms seriously and seek help – even if you have doubts.
Share your story
If you yourself live with endometriosis and would like to share your story, you are always welcome to write to us.
The more we talk about endometriosis, the harder it becomes to overlook the disease.
