“I think there is a lack of awareness in society about endometriosis.”

Interview with Endometriosis Patient Charlotte

Hello, Charlotte. We appreciate your willingness to share your journey with endometriosis. Please introduce yourself and describe what endometriosis means to you.

Charlotte: Certainly, I’m Charlotte, a 24-year-old studying to become an elementary school teacher. I’ve faced numerous challenges throughout my life, but dealing with endometriosis has undoubtedly been one of the most trying periods for me.

Could you share your medical history leading up to your endometriosis diagnosis and highlight the most challenging aspect of that time?

Charlotte: My menstrual cycle began at the age of 13, and I started taking birth control pills at 15. I discontinued the pill at 20 and moved away for my studies, living on my own. Over time, the pain intensified to the point where I was consuming about 6 to 7 painkillers daily to endure it. I even had to resort to taking opiates. On a few occasions, I ran out of pain medication and fainted from the excruciating pain in my apartment in Hildesheim, where I attend university.

I visited the hospital at night, and after an examination, the doctors couldn’t identify any issues. They suggested I stay there, but I was determined to attend classes the next day and tried my best to push through the pain. When the pandemic hit, I moved back in with my parents, and that’s when they noticed my distress. My father is a physician, and my mother is a physiotherapist, and they both encouraged me to seek medical attention again.

In October of last year, I visited a medical facility in Bielefeld, and in November 2020, I underwent my first surgery. A second surgery followed in March 2021. That’s my story up to this point.

Where was the endometriosis located in your case?

Charlotte: I was diagnosed with adenomyosis and deep infiltrating endometriosis, primarily found on the peritoneum. There’s also a suspicion of endometriosis on the intestine, but currently, we’re avoiding further surgery since I’ve already had two operations in the past five months.

So, you endured this severe pain alone for a significant period without discussing it with your parents or friends?

Charlotte: It’s common for people, including myself, to view such pain as usual. Back then, it wasn’t something openly discussed among my friends either. When I started university, my girlfriends would comment about how unwell I appeared during my period, but I still didn’t disclose my situation to my parents or friends back home for quite some time. I’m currently in a phase of processing, which is exceptionally challenging because I suppressed the pain for so many years. I rarely spoke about it before.

Is it therapeutic for you to talk about it now?

Charlotte: It can be, but it’s not consistently so. At times, I still feel incredibly isolated. I’m 24 years old, and I’m not in a relationship at the moment. When doctors tell you that you should try to get pregnant by the time you’re 26 or 27, it doesn’t feel right. I’ve been on birth control for half a year, and I couldn’t tolerate it at all. Currently, I’ve been in pain for two and a half weeks because I’m not menstruating, and it’s challenging for outsiders to comprehend. I often feel entirely on my own in this situation. How can you navigate this all alone, especially while pursuing my studies and eventually in my career? I can understand why some women may feel they can’t bear it any longer because it’s just so overwhelming.

There are also support groups available in specific endometriosis centers, and you can contact them for assistance. Additionally, you can exchange information through social media. However, it is crucial to address a common issue: many doctors often advise women to have children as quickly as possible, which might not align with their current life phase, especially amid their studies. Typically, planning for children does not come to mind while you are still pursuing your education. And if you do not have the right partner, it further complicates matters. It is vital not to let this pressure from doctors affect you, as you are still young.

Charlotte: It’s worth pondering what might transpire when doctors convey such advice to patients. Such statements immediately create a sense of pressure, which can be overwhelming. To doctors, it may seem like well-intentioned advice, but it doesn’t have a positive impact.

What limitations do you experience in your daily life? While you can attend university events and maintain a social life to an extent, are there moments when you find it challenging?

Charlotte: I consider myself to be quite resilient, but in daily life, I do encounter situations where I sometimes reach my limits. For instance, when I’m out with friends in the evening, and my stomach becomes swollen, painful, and hard due to severe digestive problems, it’s not something I like to discuss openly. Additionally, I’ve noticed that, in general, I’m not as physically fit as others my age. I believe it’s related to this condition because there’s constant inflammation in the body. I’m still in the process of finding my way to cope with it all. It’s undoubtedly very stressful, especially when you realize it won’t go away.

Are you already exploring ways to improve your well-being?

Charlotte: I’ve completely switched to a vegan diet for the past month and a half. I’m trying to find ways to manage the pain through dietary changes, relaxation techniques, massage, and physical therapy. I’ve also considered trying a different contraceptive pill. However, I’ve tried four other pills in the past, and none of them suited me. I experienced severe side effects, including vision problems and daily nausea that made it hard to eat. Maybe I’ll gather the courage to try another one, but I’m skeptical.

How have your parents been coping with your situation, especially now that you are back home?

Charlotte: They have been deeply affected by my situation, especially since I moved back home. Witnessing their daughter in such pain is distressing for them. They constantly ask about my well-being and encourage me to open up when I’m unwell. Sometimes, just having them there to listen to and vent is a great relief.

What are your hopes for the future of endometriosis?

Charlotte: I hope for a better understanding of how the condition develops and increased societal awareness about its complexity. It’s frustrating that people often reduce endometriosis to severe period pain, while it can also cause intense pain outside of menstruation or during sexual intercourse. I believe there’s a significant lack of awareness about this condition, and it’s underestimated.

You mentioned that endometriosis is often simplified as severe period pain. Why do you think the condition is still not fully recognized?

Charlotte: I believe it’s because the medical field is predominantly male-dominated. Many reputable male and female doctors have acknowledged that if this were a condition affecting men, the treatment methods would likely be quite different. Additionally, it remains a somewhat taboo topic because women don’t openly discuss it. I didn’t talk about it myself for a long time. If there were more open conversations, I’m sure it would help. However, in our society, we tend not to listen as much, and we live in a highly competitive environment. Admitting that you’re not doing well or that your education or studies are taking longer because of it is often met with judgment. In our society, we don’t openly discuss tough times.

I completely agree. It’s almost as if there’s no room for being unwell or needing a break. The pressure to constantly perform is overwhelming. Ideally, you would never fall ill. In the workplace, people sometimes even gossip when someone is sick.

Charlotte: Especially among women, there’s sometimes this perception that ‘she’s just seeking attention.’ This kind of competitive attitude among women certainly contributes to the issue. Women need to support and understand each other better.