“Why should I take pain medication when I’m perfectly healthy?”

Interview with Endometriosis Patient Jasmin Locknik

It took 18 years to reach a diagnosis. The persistent sensation of not being heard or understood was Jasmin’s daily companion. Yet, she never lost her contagious zest for life. We had the opportunity to speak with her.

Thank you, Jasmin, for taking the time to share your experience with us regarding your endometriosis. Can you please provide a brief introduction about yourself?

Jasmin: Certainly. My name is Jasmin. I’m 36 years old, and I live near Münster.

What does endometriosis mean to you?

Jasmin: To me, endometriosis represents uncertainty and pain, primarily. Unfortunately, it also signifies the loss of flexibility.

Please tell us about the journey of your medical history leading up to your final diagnosis and what was the most challenging aspect for you during that period.

Jasmin: It was only last September, after 18 long years, that I received a diagnosis by chance. Until then, I had always believed that I was overly sensitive, as it was often suggested to me. When I had my period, I experienced bowel issues and severe pain and was unable to engage in daily activities. I mistakenly assumed that these symptoms were normal. I constantly felt restricted and dealt with extreme fatigue and exhaustion. At the beginning of last year, I started experiencing intense back pain, and I had to be assisted to bed by my husband as I couldn’t walk anymore. That’s when I realized something was seriously wrong. Thankfully, I have an excellent family doctor who mentioned that it sounded like endometriosis. He referred me to a female doctor, as I had never been satisfied with my gynecologists. The new doctor also claimed that I was in good health and should take ibuprofen twice a day to manage the pain.

I couldn’t fathom why I should resort to painkillers when I was supposed to be perfectly healthy. I didn’t just accept this explanation; eventually, I consulted a genuinely exceptional doctor in Münster on a recommendation. She conducted an examination and told me, “You have a benign tumor the size of your uterus, and it needs to be removed.” This marked the beginning of my journey last year. I was then referred to a medical center where the tumor removal was scheduled. During the procedure, my left ovary had to be removed due to extensive adhesions. A few days later, I was informed: “You have endometriosis. You should discuss it with your gynecologist.” That’s all the information I received.

The most distressing aspect was that throughout this time, the medical professionals didn’t detect that my kidney had already failed due to endometriosis, and I nearly succumbed to sepsis in October last year because the endometriosis had constricted the ureter to the extent that the kidney could no longer function. Consequently, I was admitted to UKM in Münster, which comes highly recommended for endometriosis cases. Dr. Schäfer examined me and immediately discerned what other doctors had failed to see for years. I was diagnosed with grade 4 deep infiltrated endometriosis in the posterior vaginal wall, endometriosis foci that had invaded the bowel, the loss of a kidney, a pelvis congested with endometriosis, and adenomyosis. In the middle of this year, I underwent surgery to remove my uterus and the endometriosis foci in the pelvic wall. I also had a portion of my bowel removed and currently have a stoma. The ureter had been removed earlier, and in July, the kidney was also extracted because, regrettably, it was functioning at just 11 percent, which was insufficient.

An 18-year wait for a diagnosis is incredibly lengthy. Did the doctors not take your pain seriously?

Jasmin: Exactly, they essentially left me to cope with it on my own.

Remarkably, your family doctor was the one to suggest the possible cause, as many symptoms do not initially lead people to a gynecologist.

Jasmin: It’s a combination of many small factors, and I’m, unfortunately, a prime example of this. When you visit a doctor with back pain and suspect a back issue, it may be a kidney that’s already nonfunctional and ulcerated. Without a vigilant and thorough family doctor who considers factors like menstrual cycles and bleeding and becomes concerned if someone is bleeding excessively for extended periods, these cases can go unnoticed. Another doctor diagnosed me with muscular back pain just a week before the sepsis incident last year. At some point, you start believing it yourself as well.

It is like gaslighting because you are repeatedly told that it is just in your head and that it cannot possibly be anything serious. Endometriosis is drastically underestimated as a condition, and the reality is that it can be life-threatening, yet it continues to be consistently undervalued. There are cases as severe as yours.

Why do you believe the condition is still underestimated?

Jasmin: Many people, particularly on the gynecological front, look the other way because the condition is elusive. It’s challenging to diagnose and doesn’t always appear on ultrasound scans. Many established gynecologists prefer to disregard it, saying, “It didn’t exist in the past, so it doesn’t exist now.” Laparoscopy is the primary method for diagnosis, and I also believe that too few surgeries are performed. Perhaps I’m being a bit critical, but I think that when a patient reports pain, it should trigger an investigation.

That is right. When I was initially suspected of having endometriosis, nothing showed up on ultrasound scans. I underwent various ultrasounds and even had an endosonography, and still, nothing was detected. It was not until the laparoscopy that the doctors found my entire abdomen affected, and they temporarily closed me up since I was scheduled for major surgery a few months later. As you mentioned, surgery is indeed necessary to make a definitive diagnosis. When women experience severe symptoms but nothing is visible on ultrasound, their pain is often dismissed.

Jasmin: Exactly, but in essence, numerous conditions aren’t visible, yet they are taken more seriously than this one, which can potentially be life-threatening. Once organs are affected, things can take a dangerous turn. You can draw a parallel with depression, which is also invisible but can significantly impact your well-being and, in severe cases, pose a risk to your life. While I was in rehabilitation with other women in Ratzeburg, I told them that we all grapple with a profound form of depression because this disease exacts such a heavy toll. The most challenging aspect of daily life is the persistent uncertainty and powerlessness it imposes on us.

Now, you have a stoma, which certainly comes with its own set of limitations. What other restrictions do you currently experience in daily life?

Jasmin: My social contacts are pretty limited, even outside the context of the pandemic, because I realize that I’m unable to engage in activities that others can. What’s most challenging for me is the restrictions on physical activity. I can walk normally again, but with endometriosis, there are many things I can’t do, and for me, this relates significantly to physical exercise. Any abdominal vibration can potentially lead to the growth of new endometriosis foci.

I was a dancer, so I can take pride in that accomplishment. The psychological burden is also quite significant. I no longer have a period, but I experience phantom pain, not just due to the hysterectomy but also because of the loss of a kidney. I often take pain medication even when I’m not in pain at all, and it’s because my pain memory plays tricks on me. This is my most significant limitation.

What helps you to cope with these challenges?

Jasmin: Music, a lot of music, and connecting with other individuals with endometriosis. During my rehabilitation, I realized there’s a distinction between talking to my family and friends and conversing with those who share similar experiences. Those who aren’t directly affected by the condition can never wholly understand the depth of what you’re going through. It’s not only about physical health but especially mental health. I believe that every individual with endometriosis should consider participating in such a rehabilitation program, as it leads to incredible friendships and connections with people you don’t even know but who share an intimate bond.

The exchanges I have with fellow individuals with endometriosis through interviews are something I’ve never experienced with others, and I’m so grateful for it. We can offer each other tips and support in these conversations. I think that if I were sitting here without having endometriosis myself, I wouldn’t be able to provide the kind of understanding that we, living with this condition, deserve.

Have you gained any specific insights you want to share with other women?

Jasmin: I don’t have dietary advice or tips on how to place a hot water bottle on your belly most effectively. What I’ve learned and found most important for myself is that you can talk extensively about how challenging it is, but I’ve decided that once the ostomy is reversed, I’ll strive to live my life to the fullest, like a healthy person. The condition will be a part of us for the rest of our lives, but please don’t let it make you feel unwell every day. The more you convince yourself of your illness mentally, the worse you’ll feel physically. That would be a great injustice. This life is a one-time opportunity. This body we have is unique. It is what it is now. We bear scars that tell our story, but I don’t allow this condition to bring me down. I want to continue living my life as someone who is relatively healthy. Every woman should take this to heart – it’s essential to find happiness, and if it means reconsidering your entire life, so be it, but make sure you’re happy.

Maintaining a positive outlook on life can have a profound impact because life continues, and it must go on. You still have many years ahead, so dwelling in self-pity is not an option.

Above all, we need to remember that a century ago, we might have succumbed to this condition, not due to adhesions, but because of organ involvement and organ failure, as was the case with me. We would have lost our lives to it, and even today, there’s a possibility that a woman may die from it because of organ failure and the condition not being correctly diagnosed. I’m not sharing my story to seek pity or attention. I’m doing quite well. I want other women to realize how severe this condition can become and to encourage them to listen to their bodies. My intuition told me that my bowels were affected, even though doctors initially ruled out bowel involvement because I didn’t experience pain or bleeding during bowel movements. Your body communicates when something is amiss!

Thank you, Jasmin, for sharing your story with us. I believe it can inspire and uplift many people because you maintain a positive attitude despite your challenges with endometriosis. You can be an excellent role model, helping others find the strength to confront life’s difficulties.

Mona Briese