“I experienced a brief period of euphoria, but then came the challenging moment.”

Interview with Endometriosis Patient Lena Noske

Lena had been grappling with severe symptoms ever since her first menstrual cycle, and for many years, she had no explanation for what she was going through. It was not until she came across information about endometriosis on social media that she decided to approach her gynecologist to discuss her condition. A subsequent ultrasound revealed the presence of adenomyosis as well. Today, Lena is an actress performing on the stages of theaters in Berlin, and she strives to manage her everyday life while dealing with endometriosis through mindfulness. We had the opportunity to speak with her.

Hi Lena, I appreciate your willingness to share your experiences with us regarding endometriosis. Could you kindly introduce yourself?

Lena: Of course. I’m Lena Noske, a 30-year-old actress residing in Berlin, and I’m living with endometriosis.

How would you describe the impact of endometriosis on your life?

Lena: Endometriosis is a complex mix of overwhelming emotions and, regrettably, a substantial amount of pain. But, interestingly, the term “endometriosis” also symbolizes a sense of assurance to me. This is because, like many others, I had to endure a prolonged period of uncertainty before receiving my diagnosis. When you put a name to something, it becomes more tangible. Consequently, I have both positive and negative associations with it.

Can you share the journey of your medical history leading up to your final diagnosis? What was the most challenging aspect for you during this process?

Lena: Certainly. I began menstruating at the age of 12, and I experienced severe period pain and heavy bleeding from an early age. It got to the point where I would often faint at school due to the intensity of the pain. When I was 13, I was prescribed birth control pills to manage the pain, but there was no discussion at that time about whether such severe pain was normal. Today, there’s more scrutiny, but it seems that in my generation, birth control pills were often the quick solution. As a young girl, I didn’t question it; taking the pill was considered somewhat fashionable. I continued taking it for a substantial period, and it worked well for about 6 or 7 years. However, my pain resurfaced and intensified over time.

Nonetheless, I eventually discontinued my use of birth control pills, and my symptoms resurged significantly. Before my diagnosis, I had believed that what I was experiencing was normal. I thought that some simply endured more pain. Then, in 2019, I learned about an influencer through a friend with endometriosis. As I examined their profile, I noticed striking similarities in our experiences. Motivated by this, I returned to my gynecologist and had to advocate strongly for a referral to an endometriosis center. It was during an ultrasound at this center that they discovered adenomyosis, and endometriosis was also suspected. In April 2021, I underwent surgery, finally receiving a formal diagnosis. The most challenging aspect of this journey was the repeated dismissals and being told that my symptoms were insignificant. Despite these reassurances, I knew I wasn’t well. Struggling to reconcile the contradiction of being consistently told I was healthy while feeling anything but healthy and doubting my perception was the most trying aspect for me.

All the doctors did not take your concerns seriously and dismissed them?

Lena: Some doctors did take my concerns seriously, but they couldn’t find any concrete explanations. Endometriosis was never mentioned as a potential cause for my symptoms, and the situation just kept leading to dead ends.

It is often the case that patients themselves stumble upon information about endometriosis and think, “This sounds like what I am going through,” prompting them to delve deeper into the topic. We often hear that pain during menstruation is normal and that we should not make a fuss about it. After all, pain perception is highly individual. However, I firmly believe that when pain is excruciating, it has nothing to do with being overly sensitive. It is essential to take one’s own experiences seriously.

Lena: I remember being fearful that day before my surgery that the doctors might not find anything again, which, in hindsight, seems irrational. But my fear of receiving no answers had grown so significant. Individuals with endometriosis often endure a prolonged battle for a diagnosis.

How did the people around you react to your symptoms before you received the diagnosis? Did you discuss it openly with them?

Lena: Yes, for the most part, mainly because I needed to explain the severity of the pain. When I had my period, I would often be incapacitated for several days. Friends would attribute it to a particularly harsh menstrual cycle, but they were also unaware of what was truly happening.

Then, you discovered that you had endometriosis. What was your journey like from that point?

Lena: Initially, I was relieved to have something concrete to hold on to and confirmation that I wasn’t imagining my pain. I experienced a brief phase of euphoria, followed by a stark realization. Endometriosis is a chronic condition that one must grapple with continuously. People respond differently to it, and the effectiveness of various therapies varies. I embarked on my therapy journey. Unfortunately, birth control pills didn’t work for me, and they even exacerbated my pain. It took time to adjust and discover how to manage it. You must be incredibly gentle and mindful of yourself, experimenting with various approaches to see what works.

Why do you believe endometriosis remains underestimated as a condition?

Lena: I think it’s because it primarily affects females, it isn’t life-threatening, and most of the research is conducted by men. As blunt as it may sound, I think these factors play a significant role. Things may be gradually changing, but it takes an agonizingly long time for issues like this to gain widespread recognition.

I believe it should gain a more rapid recognition within the field of gynecology.

Lena: Absolutely. I’m still surprised that, given my symptoms, I was advised to get a copper intrauterine device. It made me feel so unwell. That’s what happens when there’s not enough education among doctors, either.

Once you receive the diagnosis and become more engaged with endometriosis, you start realizing in hindsight which symptoms were connected to endometriosis. It is only then that you grasp how long you must have been living with this condition. You endure those symptoms for an extended period without being heard.

Lena: Looking back, I also noticed that I didn’t even mention some of the things that I now recognize as symptoms because they seemed so normal for me. For instance, endometriosis on the diaphragm can cause extreme shoulder pain. I wouldn’t have thought, “Ah, this must be related to my menstrual cycle.” With more comprehensive education, early detection and treatment become much more feasible.

Yes, that’s true. I remember watching a medical TV show where a woman coughed up blood, and it turned out to be caused by endometriosis that had spread to her lungs. That was the only time I had ever heard of it, but I did not fully register until I watched that episode again after my diagnosis. It struck me how they portrayed this extreme case of endometriosis involving the lungs when there are so many other more common forms they could have highlighted. But, of course, that is not dramatic enough for a TV series.

What challenges are you currently facing in your daily life?

Lena: I’m preparing for my second surgery in October because, unfortunately, I’ve developed new symptoms. I’m currently experiencing significant bladder issues. During the second half of my menstrual cycle, I generally feel better, but from the first day of my period until ovulation, I experience daily pain. During the first few days of my period, I’m often bedridden, but I do have access to effective pain medication.

Although you have not been diagnosed for very long, how have you learned to cope with this condition?

Lena: I believe that we are continually learning. Our spirits are capable of incredible resilience, and with a positive mindset, mindfulness, and self-compassion, you can achieve a great deal. I think these approaches help with accepting the diagnosis and not constantly battling against it because this is the reality we have to contend with. It’s not about signing up for a permanent status quo but acknowledging that endometriosis is a part of our journey, both its positive and negative aspects. It’s an opportunity to engage with ourselves positively. Sometimes, it works, and sometimes, I feel that everything is unfair, but thankfully, those moments are infrequent. I embrace it. I don’t want to define myself solely by my condition, but endometriosis has become a part of who I am.

Did you also explore lifestyle factors like nutrition or specific physical activities, such as yoga, to find ways to improve your well-being?

Lena: I was already practicing meditation before, but I’ve incorporated it into my routine more regularly, which has been incredibly beneficial. Cold showers, although quite uncomfortable, also have a surprisingly positive impact on me. A vegan diet significantly helps with my digestive issues. I believe it’s important to see what works best for you. Personally, I’ve found osteopathy and acupuncture to be very helpful.

Just as every woman’s experience with this condition is unique, you must assess how your body responds to factors like nutrition. For instance, some women can eat oatmeal or muesli in the morning without issues, but it makes me feel unwell afterward. It’s crucial to introduce one change at a time and observe how your body reacts.

Lena: Learning what works for you is also a process. I always had bloating, and it was particularly pronounced during my period. However, I didn’t consider that might be linked to my diet, exercise, and sleep patterns. It can be a bit overwhelming sometimes, but it’s essential to make gradual adjustments rather than changing a thousand things at once. This way, you can identify what truly benefits you. It takes time, and there are still comfort indulgences that you know might not make you feel great afterward, but you need them for your emotional well-being, and that’s perfectly fine.

Red wine and tomatoes are high in histamine, which can be problematic for many individuals with endometriosis.

Lena: It’s an issue for me as well. I already have several allergies and can consume very little fruit, but I’m not willing to give up tomatoes, even though I know I react to them. It’s one of those things where I decide, “Alright, I’ll live with it, but I can’t give it up, too.” And you plan. Avoid consuming them right before an important appointment or stressful day. Instead, you prepare yourself accordingly.

Let us shift our focus for a moment. Have you considered the prospect of having children, and does it play a role in your thoughts and decisions?

Lena: Following the surgery, I was informed that pregnancy might not be feasible due to the presence of adenomyosis. I’ve had open discussions about this with my partner and friends. For a long time, it was crystal clear to me that I wanted to be a mother, and that was my envisioned path in life. However, you must reevaluate your priorities when you suddenly hear that it might not unfold as planned. I had to ponder why it was so important to me, whether there were alternative approaches, and if I could envision a life without children. It forces you to introspect. The catalyst wasn’t pleasant, but I believe the outcome can still be positive. I’ve adopted a mindset of taking each day as it comes. What I desire can evolve even within five years. So, it compels you to engage with yourself positively.

Is there anything specific you’ve learned you’d like to share with other women? What advice would you offer to those on a similar journey?

Lena: I’ve come to understand the importance of trusting my instincts; if something doesn’t feel quite right, there’s a good chance you’re correct because you know your own body. It’s crucial not to lose faith in yourself. My advice would be to persevere, even when it’s time-consuming and frustrating. Knowing about what’s happening is always better than remaining in the dark. Furthermore, self-care, staying true to yourself, and being open to approaches enhancing your well-being is essential.

Thank you so much, Lena, for sharing your story. I wish you all the best.

Mona Briese