YOU DON’T SEE WHAT I FEEL
"The pain is the worst part of my illness, but after that comes the medication." - Mette J., 44 years old. When Mette was told ten years ago, after nine surgeries, that doctors couldn't do more, her only option was to say yes to morphine.
Forty milligrams daily allow her to be the mother she wants to be for her two children, but that's all Mette can handle right now. She has no energy left to figure out what she wants for herself.
If she doesn't get her medication on time, she experiences cold sweats, vomiting, and tremors, which makes her feel like an addict. Thoughts about the consequences of her daily intake fill her mind, as she wants to live a long life and see her children grow up.
“The pain wasn't something I imagined.” In Denmark, about ten percent of all women of childbearing age live with endometriosis—a condition where tissue similar to that of the uterus grows and bleeds in other areas of the lower abdomen and pelvic cavity.
Five women open up about what the disease has done to them from its hidden place. Common to them all is reduced fertility and intense abdominal pain, resulting in one or more surgeries.
For some of them, it has been a long journey filled with uncertainty and doubt about what they felt in themselves. On average, it takes seven years to receive a diagnosis, and only 20 percent, like Anne, Stephanie, and the others with the condition, receive confirmation.
None of the women had heard of endometriosis before it was noted in their medical records. The cause of the disease is unknown. Women's health issues are generally under-researched, and endometriosis is no exception. For the first time ever, funding for endometriosis research was allocated in 2020. Danish researchers are calling for a national action plan to ensure that women receive the appropriate treatment and a faster diagnosis, as this can significantly impact how the disease progresses.
Meanwhile, Mette J., Anne, Mette M., Christina, and Stephanie try to pursue their dreams, which are hidden behind a wall of pain that constantly grows higher. The pain makes them feel alone, blocks intimacy, and threatens the hope of becoming mothers. No one can see it, but they feel the pain demanding that they listen to their bodies and give themselves love and attention—attention that they hope will finally be given to endometriosis, so that other young women can get the right help in time if their menstruation hurts more than it should.
2024
"I feel lonely inside when I'm engulfed in the torment of pain, invisible to others." - Anne, 31 years old.
One autumn night, at the age of 19, Anne awoke from six hours of full anesthesia to the surgeon's words: "If you want children, you should have them early." With a newfound desire to start a family, she left the hospital, but she found herself facing her struggles alone.
After five years of fighting, joy flooded her painful body when she became pregnant with the help of a donor. Carrying her unborn child, she sought love because she wanted a family that also had a dad. Two years later, she met Jacob, and when her little girl called him "dad" for the first time, her dream finally came true.
"I'm listening to my body now and dare to be the one who needs help." - Mette M., 42 years old. The pains truly intensified when Mette stopped taking hormones after giving birth to her daughter 12 years ago.
Before the illness escalated, she was the one who handled everything on her own, but over the years, she grew more and more tired. After years of suppressing the pain, she ultimately had to go under the knife to have cysts and endometrial tissue removed from her pelvis.
It took time for Mette to accept her vulnerability and understand that her pain was real. The realization made her open up to her family, so they could help her. It has brought her closer to her loved ones, a bond she wouldn't trade for anything.
"It feels like I'm trying to run on a treadmill where the speed is set too high." - Stephanie, 33 years old.
The pain in Stephanie's pelvis dictates when she needs to withdraw and seek solace beneath the warm shower. Under the embrace of the water, doubt used to spread within her: perhaps people think she's lying about the pain, seeing it as just an excuse for avoiding dinner parties or enduring long workdays. She even doubts whether the pain is real or something she made up in her head.
Twelve years ago, when she had a mass of old blood the size of a tennis ball removed from her abdominal cavity, she was assured that her pain was real. As she watches others live their lives, she’s left with the lingering feeling that she’s only allowed to taste a second-best existence.
"I've always loved sex, but the pain took away the pleasure from me." - Christina, 30 years old. Christina and her husband desperately tried to maintain their sex life, but it often ended in failure because it hurt her too much.
The anger over Christina's intense pain quickly turned to tears. She desired him, but the pain pulled her away from pleasure and intimacy. Over time, it changed Christina's perception of the female body from being sensual and fertile to a source of insecurity in her interactions with the world.
They managed to have a little boy, but the marriage did not survive the hormone treatments and the challenges with sex that arose during pregnancy. Today, she is attempting to rediscover her desire through acupuncture treatment.
