The patients journey
A patient’s journey typically consists of several steps that follow one another in a logical sequence. Here we describe the most common, typical journey. Of course, it can vary significantly from patient to patient.
Something Is Wrong
Headline: Pain nobody believed.
I was fifteen when I first couldn't get out of bed. They told me I was oversensitive. For twenty years they told me it was normal. It wasn't.
Note: Endometriosis affects approximately 1 in 10 women. Yet the average time from first symptoms to diagnosis takes 7 to 10 years. Years when women go from doctor to doctor. Years when they hear: "Periods just hurt."
The Path to Diagnosis
The seventh doctor. Finally, someone listened.
Gynecologist number one said: hormonal contraception. Number two: try to stop stressing. Number three: maybe psychosomatic. Number seven sat down, looked me in the eyes and said: "I think I know what's wrong with you."
Note: The only reliable method for diagnosing endometriosis is laparoscopy – a surgical procedure. X-rays, ultrasounds, and blood tests cannot reliably detect it. Many women have to actively fight for an examination.
Emotion: A diagnosis brings a paradoxical relief. Finally I have a name for what I feel. At the same time comes fear: What does this mean for me?
Treatment – Choices Without Easy Answers
There is no single right solution.
The doctor gave me a choice. But none of the options were good. They were just different kinds of difficult compromises.
Note: Treatment for endometriosis is complex and highly individual. It includes hormonal therapy, which can suppress symptoms but brings side effects. Or surgery – laparoscopic removal of lesions. Or a combination of both.
None of the methods cure endometriosis. The goal is to improve quality of life and slow the progression of the disease.
I was choosing between pain and side effects. Both options were mine.
Psychological Impact
Chronic pain changes a person.
I stopped planning holidays. I stopped promising I'd come. I never knew what kind of day it would be.
Note: Women with endometriosis statistically have a higher incidence of depression and anxiety disorders. It's not weakness – it's a natural response of body and mind to years of unheard pain and uncertainty.
Chronic illness affects relationships, careers, and self-image. A woman learns to live with a body that has repeatedly let her down.
I stopped apologizing for my illness. It took me ten years.