Danique's story.
Living with a chronic illness
General information
Can you tell us something about yourself?
My name is Danique, I'm 31 years old and the mother of a 6-year-old daughter and a 3-year-old son. In my daily life, I work as an outpatient care worker, supporting people in their home situations. Besides my work, I've been studying again for the past two years to further my development within the social field. In my free time, I enjoy sports, the occasional festival, and spending quality time with my family.
What chronic illness do you have and when were you diagnosed?
In 2024, I was referred to a gynecologist on suspicion of endometriosis. In January 2025, I was diagnosed with endometriosis and adenomyosis, which was confirmed through laparoscopy.
What was the process like leading up to your diagnosis?
As a teenager, I was very ill during my first periods. My doctor quickly put me on the pill. This often only worked for a few months, and then the symptoms returned. Years of trial and error followed, with different types of hormones and constant changes after a while. Things were fine for a while until my pregnancies. I started experiencing vague abdominal pain that sometimes came and went around my period, but also at random times. I experienced extreme fatigue, severe pain, and irregular periods.
After two years of visiting my GP (and hearing all sorts of other possible causes), I was finally referred to a gynaecologist by a new GP with a suspicion of endometriosis.
Impact on daily life
How does your illness affect your daily life?
I'm currently in pain every day and have been on sick leave for most of the time since the surgery in January. Fortunately, the endometriosis was only in one area, and my gynecologist was able to remove it during laparoscopy. The pain I'm experiencing every day is likely due to the adenomyosis.
What adjustments did you have to make to your routine?
Where I used to go to the gym about four times a week, I haven't worked out at all for about ten months now. Exercising is too strenuous and actually causes more pain now. I haven't been to a festival in a few years, and even working is barely possible at the moment. All my energy goes to my family.
How did those around you (family, friends, work) react to your diagnosis?
My mother, in particular, found a lot of familiarity with the symptoms she herself experienced years ago, and many pieces of the puzzle fell into place. She never received an official diagnosis, but she had the same symptoms and underwent the same treatments. Ultimately, her uterus was removed, and mine will be undergoing the same procedure soon.
Physical and mental health
Which symptoms affect you the most?
The daily pain is especially debilitating. I have good and bad weeks, and I always have to anticipate that.
How do you cope with the mental impact of your illness?
I've been quite sad about having this disease and all the things it's brought on over the past year. In addition, all the hormones have caused me a lot of mood swings, which hasn't always been easy on my family. Now that I've stopped taking it and am waiting for the hysterectomy, I've realized I've accepted it and am especially looking forward to getting back to "normal" life as best I can.
Do you have any specific aids or treatments that help you?
Unfortunately, the treatments I've undergone haven't had the desired effect, so we've now jointly decided to have my uterus removed. While there's no curative treatment for endometriosis, the adenomyosis (and its associated symptoms) will be gone. Once I've recovered, I hope to be able to live pain-free, but there's always a chance the endometriosis will return.
Medical care and experiences
Do you have positive or negative experiences with doctors and specialists?
I spent a lot of time with my GP and was given all sorts of diagnoses about the cause of my abdominal pain. And once I saw my gynecologist, I had to wait a long time and try all sorts of things first. Fortunately, I always felt heard and had a say in what I wanted and didn't want during the treatments.
What do you wish doctors understood better about your illness?
So much remains unknown about endometriosis and adenomyosis. Many doctors still know too little about what works and what doesn't for this disease. Greater awareness leads to greater understanding. Sometimes it takes years before a diagnosis is reached, and a patient feels so desperate. I hope that through greater awareness and understanding, diagnoses will be made more quickly in the future.
What advice or treatments have worked well for you?
Right now, a hot water bottle, rest, and a balanced schedule are the best ways to relieve pain. And painkillers!
Support and community
Have you found support from peers or online communities?
Yes, since my diagnosis, I've joined a Facebook group and started following women on Instagram who also live with endometriosis. That recognition and connection with others in the same situation means a lot to me. The feeling that I'm not alone is incredibly empowering. By sharing my experiences, I've already learned a lot about the disease.
What does support mean to you, and what helps you most?
For me, support means not having to face things alone. It's a listening ear, a small gesture, or someone who genuinely thinks along with me. My husband is a tremendous support. He takes over a lot of childcare when I'm in a lot of pain. I'm very grateful for that. We also have a great network of family and friends we can always rely on.
Tips and advice
What advice would you give to someone who has just been diagnosed?
Give yourself time to process the diagnosis and allow yourself the space to feel what's going on inside you. Talk about it with those close to you. Learn more about the disease so you better understand what's happening in your body. And perhaps most importantly, connect with others who are going through the same thing. Sharing experiences with others going through the same thing can be incredibly supportive and relatable. You're truly not alone.
What advice would you give to healthy people about living with a chronic illness?
Many chronic illnesses are invisible to the eye. Someone might appear "normally healthy," but inside, they struggle daily with pain, fatigue, uncertainty, or limitations. So don't be too quick to judge. Ask how someone is truly doing, even if you don't see anything wrong with them. Be gentle, patient, and listen without immediately trying to solve something. Sometimes, just understanding and being present is enough.
Future and hope
How do you view the future with your illness?
I hope to recover well from the upcoming surgery. Once I've recovered, I'd like to resume my work and studies, and also gradually build up my exercise routine. I want to build a good balance so I can consciously divide my energy between my health, my family, and my ambitions.
Do you have certain goals or dreams that you want to achieve despite your illness?
After the summer, I want to get my diploma and perhaps continue my studies afterward. And I'm still dreaming of a wonderful, long-distance trip with my family in the future.
Love,
Danique.