“When I Speak Out, I’m Raising Awareness”

Interview with Endometriosis Patient Melanie Mardiros

During her school days, Melanie often found herself accused of skipping classes. However, the harsh reality was that she grappled with excruciating pain and severe bleeding, making it impossible for her to attend. Today, Melanie is aware that she has endometriosis and openly discusses it with those in her life, including her music professor. She has had enough of unjust accusations. In our conversation, she shares her journey to diagnosis and her ongoing experience with the condition.

Melanie, thank you for sharing your time with us today to discuss your experience with endometriosis. Please introduce yourself.

Melanie: Certainly. I’m Melanie, I’m 20 years old. I received my endometriosis diagnosis in June 2021, following my first surgery. I’m actively involved in music; I play the violin and piano and started my studies at the Musikhochschule in Bremen in October.

What does having endometriosis mean to you?

Melanie: Having endometriosis has always made me feel that something was amiss in my body. I often had the sense that my gynecologist didn’t take my concerns seriously. Like many others, my initial treatment involved being prescribed birth control pills to alleviate the pain. I experienced severe pain from the very beginning, with my first period occurring when I was 12. The pain was intense, at times making me unable even to feel my legs. It eventually radiated down to my legs, causing me to faint and vomit. I vividly remember my experiences in the 7th grade when I had to leave school because the pain became unbearable. Unfortunately, even at school, I wasn’t taken seriously, and it was assumed that I was trying to skip class.

When I was 17, I had a conversation with my mom, and she mentioned she had always experienced pain like I was going through. She was born in 1960, when there weren’t as many resources to investigate such issues. She decided to take me to a gynecologist, but there, I was only advised to try the birth control pills. However, when the pain didn’t subside, the doctor recommended I continue taking the pills for an extended period. But this wasn’t a definitive diagnosis, and it didn’t alleviate my pain. I didn’t see any progress, and, once again, I didn’t feel like my concerns were being taken seriously.

Then, through Instagram, I began hearing about a condition called endometriosis. I decided to look it up, and as I read about it, I realized that the symptoms were similar to mine. I went back to the gynecologist and inquired about the possibility of having endometriosis. At that point, I was informed that even if I did have it, there were no available treatment options. I was in my final year of high school then, so I put it on hold.

After graduating, my periods continued to be extremely painful, and I told myself I couldn’t endure it any longer. I scheduled an appointment with the Endometriosis Association, and they suggested I visit an endometriosis clinic. I followed their advice, but it took a year to get an appointment. During the ultrasound at the clinic, they immediately suspected endometriosis. I was frustrated and wondered why they hadn’t conducted an ultrasound earlier. I had the choice between hormone therapy or surgery for diagnosis and to remove the lesions. I opted for the latter, although it was my first one, and I was pretty scared.

The surgery was scheduled as an outpatient procedure, and the hospital staff seemed eager to discharge me right after despite my feeling unwell. The nurses also encouraged me to walk, but I couldn’t do it. Eventually, they realized I was unable to get up, and I was allowed to stay overnight. However, I received very little information after the surgery. I was told that a few endometriosis lesions were removed, and I had endometriosis, but they didn’t discuss treatment options or what steps to take next.

I then sought out a new gynecologist, who informed me that I could either take Dienogest or undergo another surgery. I’ve been taking Dienogest since June, but I still experience bleeding and pain. I currently feel uncertain and overwhelmed; this is all new to me. Recently, during a follow-up appointment, I was told that I have a new 6-centimeter cyst, and I’m not doing well at all. I was advised to continue taking Dienogest and monitor how it works in my menstrual cycle over the long term. All of this has significantly affected my daily life. I experience nausea and pain, and it seems there’s no solution in sight. I wish healthcare providers would be more supportive and provide better guidance to patients about what’s happening. That’s why I’ve sought out another endometriosis center, and I’m hopeful that I’ll receive better help there.

That is also a good point. Ultimately, you do not have to remain in an environment where you do not feel taken seriously, and perhaps the condition will be better managed there. You are still relatively new to the diagnosis, even though you have been dealing with these symptoms for a while, and someone must take the time to address your situation comprehensively.

How did the people around you react to the fact that you have always had such severe symptoms? Did you discuss it with your family and friends?

Melanie: When I was in school, people often suspected I was trying to skip classes. Some girls even told me not to make a big deal out of it when I mentioned I was in a lot of pain. In our yearbook, I was ranked first among those with the most absences. Looking back, it’s funny, but at that time, there was little understanding from both students and teachers. My social circle is much smaller now, as I believe in having true friends rather than a large group of people. I have three amazing friends who are incredibly supportive.

It is not about the quantity of friends; it is about having good, supportive friends. That is incredibly important because these people can help you navigate your condition. You might encounter situations in the future where you have to cancel plans because you are not feeling well, and people may expect you to justify it, but you do not owe anyone an explanation.

Melanie: I’m more open about my condition now. Most people I’ve spoken to previously didn’t know what endometriosis was. So, when I talk about it, I’m also engaging in a kind of educational effort. I had my first meeting with my new professor last month before starting grad school, and I told him that I might need to cancel a class due to my condition. It’s essential to me that there’s understanding and clarity from the beginning about what’s going on. I don’t want to be told later that I haven’t practiced, and that’s why I’m not attending class.

It is excellent that you are open about it. Very few people are aware of the condition, and by sharing your experience, you are helping raise awareness. Even if those you talk to are not directly affected, they can spread the word, especially if someone in their social circle has similar symptoms. Many women have endometriosis, and those who are informed about it can better cope with it by talking about it regularly. I also have to keep reminding the people around me that certain things are related to the medication or the disease. For instance, when I experience mood swings, I often have to reassure myself that it is a side effect of the medication.

As you navigate your daily life now, what symptoms affect you the most and disrupt your everyday life?

Melanie: Mood swings have been quite unpredictable for me. They didn’t bother me much initially, but they’ve intensified over the past few days. I experienced extreme mood swings yesterday. I’m naturally very emotional and tend to let my emotions get the best of me, but now it’s much more intense. During these episodes, I become overwhelmed and don’t interact with others as I would with a clear head. That’s what bothers me the most – not realizing it until later.

I initially took Maxim, but I had severe abdominal pain every day at the beginning and had to take ibuprofen. The pain eventually improved. I also experienced severe nausea and weakness, and I continued to have bleeding despite taking Maxim. I was initially told that taking it would stop the bleeding, but it turned out that the bleeding was due to the cyst, and I have to endure it. The symptoms come and go, and there’s no way to predict them. Before my diagnosis, I had bleeding in cycles, but now everything is unpredictable. Not being able to anticipate when it will start again is a burden.

When I moved to Bremen, I had to change my gynecologist, and my violin professor helped me. He has a lay orchestra filled with doctors, and he organized a gynecologist for me. Currently, I’m doing well. I’m only taking progestin supplements (Zafrilla) and have no pain. Nothing is holding me back anymore. However, I still have this lingering feeling that it’s somehow wrong to have “no” period.

I once took Maxim, and during that time, I experienced constant bleeding. However, I have been taking Visanne for years now, and I no longer have any bleeding.

Melanie: My gynecologist recommended Maxim, stating that it’s the most potent medication available. Generally, I’m not a fan of hormones. I believe menstruation serves a natural purpose and that it might not be beneficial to suppress it with medication. I would appreciate it if there were alternative ways to manage endometriosis without hormones.

Non-hormonal treatments are a significant focus of research. You do not want to introduce substances into your body that it does not require. I have been on the birth control pill since I was 16, so I have been taking hormones for half of my life. I have been on hormones for 16 years, and I admire women who decide to discontinue hormonal contraception. Many of them feel the change in their bodies. However, I also think that without the pill or hormonal treatment, the suffering would probably be more severe. Currently, I do not want to have my period because I often faint. I graduated in 2016, was diagnosed in 2015, and started university in 2010. I managed to drag myself to university for five years during my studies, but sometimes, I would faint or have to ask my friends to pick me up from the train because I felt unwell. It is limiting, especially when dealing with daily tasks. Concentration is essential during your studies, and that is why seeking treatment is necessary to be able to concentrate on learning. That is why it is good to seek treatment before starting university, and finding solutions is crucial.

Melanie: That was also my thought, dealing with it during the semester break before starting university. On the other hand, the pain is unpredictable, and I’d rather endure it once a month, even if it’s excruciating than face daily discomfort that limits me. When I menstruate, I schedule my break on those days. But there’s a chance that bleeding could cause more endometriosis sites to develop. It’s a difficult choice, deciding what to accept and what’s more important. It’s a dilemma: whether to endure it every day or opt for more surgeries if you prefer to keep having your period.

Are there any daily habits, such as diet or specific exercises, that help you cope better?

Melanie: I’m currently experimenting with that. I don’t pay strict attention to my diet, but I’ve heard about specific exercises I could try. I’ve also heard about modal pain management. I think it’s unfortunate that gynecologists, including the endometriosis clinic I visited, don’t provide additional information on these options. I didn’t even know you could apply for a severe disability designation at a certain level. I would like to see more education on this. I’m still figuring out what works best for me. What I do know is that bringing my legs close to my stomach helps me when I’m in pain, and I can’t tolerate heat. Hot water bottles don’t work for me; they make my pain worse.

Once again, it is a testament to how individual the condition can be. As someone relatively new to this diagnosis, is there any specific advice you would like to offer to other women, especially those who may not yet be sure if they have endometriosis?

Melanie: Since my diagnosis, I’ve been actively engaging with comments on Instagram, reaching out to people who are still uncertain and encouraging them to contact an endometriosis center while remaining persistent. You can’t afford to give up. Securing appointments and finding a new gynecologist has been a challenging process. I called an incredible 20 doctors, but many had closed waiting lists.

So, my advice to women is always to seek multiple opinions, look for support groups, and connect with those experiencing the same issues. Don’t be discouraged by doctors who often lack awareness about endometriosis. You can usually tell right away if they are unfamiliar with the condition. The other day, a fellow student described symptoms similar to what I had experienced. I immediately informed her and shared my gynecologist’s contact information. Some women may hesitate to consult a doctor regarding endometriosis, and I always offer to accompany them.

There are times when you might think, “I’ve said it so many times, and now I’m giving up.” However, it’s essential not to give up and openly discuss it with everyone. This way, we can significantly raise awareness about the condition.

Raising awareness is crucial because most people are unaware of this condition. Many women struggle with endometriosis. Even when I contacted endometriosis centers, it was challenging to secure appointments. It is baffling that a condition affecting so many patients remains relatively unknown.

Thank you so much for sharing your story. Your openness contributes to education and increased awareness, which is a vital step forward.

Mona Briese