“If men were affected, the research would also be more intensive”

Interview with Endometriosis Patient Janine

Janine, who is 29 years old, received her endometriosis diagnosis in 2019 through a laparoscopy. She has lived in Leverkusen for five years and completed her technician training there, deciding to stay in the city.

Janine, could you please share your medical history leading up to the final diagnosis and highlight the most challenging aspects of this journey for you?

Janine: From the onset of my symptoms to the diagnosis, the process was relatively swift, unlike the prolonged experiences of many others. Towards the end of 2017, I began to experience persistent back pain. Initially, I maintained my regular exercise routine, hoping the discomfort would subside. Alongside work, I was also pursuing my technician training, attending school on Mondays, Tuesdays, and Saturdays. Balancing sports, work, and school became increasingly challenging, leading me to discontinue my athletic activities. However, my back pain worsened, prompting me to consult an orthopedist. After undergoing an MRI, they suspected a herniated disc, which puzzled me since I couldn’t identify any incident that might have caused it. Moreover, I was constantly tired, cold, and frequently ill, and these symptoms intensified.

At a certain point, I decided to seek help from a new gynecologist. I discussed my concerns, including experiencing bleeding and pain during bowel movements after sexual intercourse, which has made sex impossible. The gynecologist suspected that these symptoms were indicative of endometriosis. As a result, she referred me to an endometriosis center in Cologne, where a laparoscopy was scheduled for August 12, 2019. However, I didn’t make it to that appointment. The weekend before the scheduled procedure coincided with Leverkusen’s beer fair, and I experienced such excruciating pain, that I had to call an ambulance. Consequently, the laparoscopy was performed promptly in Leverkusen. During the procedure, it was discovered that my appendix was chronically inflamed and affected by endometriosis. Additionally, endometriosis had impacted the entire Douglas space and the adjacent ovarian cavities. As a result, my appendix had to be removed. Following the surgery, I had to recover from the pain, but I also developed a bladder infection due to the catheter.

After this, I experienced a period of relative relief. However, my pain resurfaced last year (in 2021), and I also began to suffer from sciatica. Seeking answers, I consulted my family doctor to explore potential causes. Physical therapy was recommended but didn’t alleviate my pain, worsening it instead. Consequently, I underwent another abdominal procedure in July. The surgery revealed endometriosis throughout my abdominal wall, the Douglas space, the bladder roof, and between the bowel and uterus. The uterine wall was also affected, but I still wish to have children, so I’ve chosen to retain my uterus.

Feeling unheard and underserved by my previous healthcare providers, I turned to a doctor in Zurich for further guidance. However, this decision comes with the added burden of self-funding the treatment, with no guarantee of coverage from health insurance. It can be disheartening at times that we often lack the necessary support. Expenses for therapies such as osteopathy and visits to alternative practitioners frequently go uncovered. Even the costs of prescribed medications like the pill and pain relief medications remain uncompensated. I use the pill not for contraception but to manage my pain and improve my quality of life. I’ve taken it upon myself to find solutions, yet there are moments when I’m unsure of the most effective course of action. My friends, family, and boyfriend are willing to support me, but there’s only so much they can do. The journey of seeking help from one doctor to another can be challenging, and many individuals face even more daunting experiences. I’m grateful for the understanding and support I receive from my caring family doctor.

Why do you believe that endometriosis is still not given the recognition it deserves as a medical condition?

Janine: I’m not entirely sure. It may come down to the fact that it’s not considered a lucrative condition for medical professionals. Sometimes, doctors seem to prioritize financial gains over patient well-being. While the German healthcare system used to be reasonably reliable from my perspective, I’ve noticed a decline in its quality. It’s astonishing how substantial sums are invested in researching certain conditions, but the dedication to research appears lacking when it concerns a smaller group, such as women affected by endometriosis. Research efforts would be more intensive if men were also affected by it.

What are the current limitations you experience in your daily life?

Janine: Beyond the persistent pain, I find myself incredibly tired after work, even though I hold an office job. Engaging in physical activity becomes challenging, especially after undergoing surgery. My capacity to manage everyday tasks has significantly changed. I require more rest and sleep. My boyfriend assists with grocery shopping, as I sometimes experience abdominal pain when lifting heavy objects.

Have you developed any daily habits or routines that help you lead a more comfortable life?

Janine: I purchased an acupressure mat, which I find pretty helpful. When my sciatic pain becomes too intense, lying on it usually provides relief. I’ve also explored acupuncture, but it’s an out-of-pocket expense, and a package of 10 sessions can cost between 30 and 60 Euros. While this can be pretty pricey, it’s been sufficient for me. Warmth is particularly soothing for me. I have a hot water bottle and an electric heating pad. When I experience back and stomach pain, I use the hot water bottle on my stomach and the heating pad under my back. I realized during a vacation that heat offered me relief; I had significantly less pain during those weeks than I had experienced in a long time. I aim to minimize my use of pain medication since my stomach is sensitive to it. I enjoy sports and would like to resume being more active, including swimming. Unfortunately, the pandemic has made everything more challenging, as many facilities were closed.

You mentioned your desire to have children. How significant is that for you right now? Are you planning to start a family soon, or do you intend to wait longer?

Janine: My older sister is nine years my senior and has a four-year-old daughter. At this point, I’m content when I can hand the child back to her. I don’t believe I’m ready to have a child of my own just yet. My partner and I live separately, and our relationship is relatively fresh. Additionally, my cat is a significant factor in this decision. She doesn’t get along with children at all. So, regardless of how strong the desire for children might be, my commitment to my pet comes first. I wouldn’t abandon or postpone my responsibilities to an animal for the sake of having children. Many individuals with endometriosis face this challenge as they deeply desire to have children. However, my life doesn’t solely revolve around that yearning. My well-being comes first. How can I properly care for a child if I’m not in good health? I want to be present for my child, similar to how my parents were there for me. While I recognize that not everyone understands this perspective, I believe I could consider adoption if my desire for children remains strong.

What are your hopes for the future of endometriosis?

Janine: I hope that more people become aware of it and that it ceases to be a subject of mockery; I also wish that doctors, not just gynecologists, come together to recognize that endometriosis is not solely related to gynecology. Moreover, there should be no undue pressure on women to get pregnant. We’re making progress in raising awareness, and more women are becoming informed and finding support. Perhaps we can distribute informational materials about endometriosis alongside those about cervical cancer vaccines, breastfeeding, pregnancy, and contraception. It needs to be acknowledged and understood more widely.

Mona Briese