“Take yourself and your endometriosis seriously. You are not imagining things!”

Interview with Melanie Leicht

Years of enduring pain and the emotional rollercoaster of a diagnosis that shifted from “severe colon cancer” to “just” endometriosis left her traumatized. Paradoxically, this challenging journey also made her a resilient woman who now counsels patients with a powerful message: “Take your pain seriously.” Melanie Leicht, 47, is actively participating in Nadine Grotjahn’s “Endo gut, alles gut” campaign, aiming to raise greater awareness about endometriosis. She generously shared her arduous journey with the condition.

Melanie, we greatly appreciate your willingness to share your experiences as someone affected by endometriosis. Would you mind introducing yourself?

Melanie: I’m Melanie Leicht, 47 years old, and I’m a hearing aid acoustics specialist. I’ve been aware of my endometriosis since 2004.

What does endometriosis mean to you?

Melanie: Pain, unwanted interference in my life, frustration, and anger.

Please tell us about your medical journey leading to the final diagnosis. Did it take a considerable amount of time, and what was the most challenging aspect for you during that period?

Melanie: At 17, in 1992, I had my first laparoscopy. Back then, endometriosis wasn’t a recognized term, but they conducted the procedure because I had been complaining of abdominal pain for a long time. I began menstruating at the age of 10, and my grandmother and mother always told me that period pain was normal. When I was 17, the doctors claimed they found nothing amiss except that my appendix was fused to the abdominal wall, but everything else seemed fine. Over the subsequent years, I kept visiting doctors due to severe pain, and they consistently dismissed my concerns.

There was a mention of PCO (Polycystic Ovary) syndrome, but no one had a clear diagnosis. In 2003, at the age of 29, married, and having completed my master’s degree, I suddenly began experiencing heavy rectal bleeding. At first, I refused to believe it could be serious. However, this bleeding persisted and worsened over six months, making it impossible to ignore any longer. I visited my family doctor, who expressed grave concern. He referred me for a colonoscopy. During the examination under light anesthesia, I awoke due to the pain. Upon waking, I was met with the doctors’ concerned expressions and was informed that the findings didn’t look good. They advised me to go directly to my family doctor without delay. The doctors suspected advanced colon cancer, and I was on the brink of a bowel obstruction.

I was immediately admitted to the hospital but, unfortunately, to the proctology department. They performed an urgent examination, once again suspecting advanced colon cancer. The doctors recommended immediate surgery. Consequently, an extensive cancer operation was carried out without the involvement of a gynecologist, resulting in the removal of a significant portion of my intestine and the placement of an artificial intestinal outlet. Ultimately, the diagnosis turned out to be endometriosis.

“After the diagnosis of endometriosis, it seemed like no one cared.”

The most distressing part of my experience was the stark contrast between the care I received prior to the endometriosis diagnosis and the subsequent indifference. Before, I was under intense hospital care, as everyone sympathized with my condition. However, once it became clear that I had endometriosis, it felt like nobody cared about me anymore. Doctors stopped talking to me, except for one occasion when a woman, whom I think was from the lab, bluntly told me, “We know what you have now. You have endometriosis,” without providing any information about the condition. It was my husband who took it upon himself to research it at home.

While I was still in the hospital, my abdomen burst open again, and initially, they wanted to send me home with an open wound. However, due to inflammation at the scar site, I had to undergo another operation and receive treatment. Then, I started experiencing milk production, and no one knew how to address it. Subsequently, I was transferred to the gynecology department, where I was prescribed medication, but the level of care remained lacking.

My life took an abrupt and traumatic turn. I was in constant pain, and it felt like overnight, everything had changed. People kept reminding me not to make a big deal out of it and to be grateful that it wasn’t cancer, which I certainly am.

I can understand that, on the one hand, it might be a relief that it was not cancer, especially since advanced colon cancer can have a dire prognosis. However, on the other hand, as someone with endometriosis myself, I know that having one condition does not make the other any less challenging. The pain experienced by endometriosis patients is often described as equally or even more severe. That is why I can empathize with how you felt – being taken seriously when they suspected cancer, only to feel abandoned when it turned out not to be. I can imagine that was a very traumatic experience.

Melanie: I’m missing 35 cm of my colon, and when I inquired about potential consequences and if I needed to be cautious with anything, I was told, “No, no, everything is okay.” They didn’t mention any special diet or provide any guidance. Later, my intestine was repositioned, but again, I wasn’t informed about what to expect. Nobody advised me on how to regain proper digestion and sphincter function. It took me a long time to figure it out on my own. It was only later, in a support group, that I heard another patient, whose bowel had been relocated as well, had been given exercises for the sphincter muscle.

One would expect that such situations are handled differently nowadays. In 2016, following a major operation, there was a real risk of me waking up with an artificial bowel outlet. Fortunately, that scenario was avoided, but the doctors were also commendable. It is worth noting that in 2016, 12 years after your initial major surgery, the medical community might have been more informed about these matters. Furthermore, I was also under gynecological care.

Melanie: Yes, and I found myself in the proctology department. I later discovered that multiple samples had been taken in the hospital, and the doctors were already aware, even before the surgery, that the tumor they had taken was benign. Nevertheless, they proceeded with extensive cancer surgery, removing all the lymph nodes in my abdomen and more. I’m uncertain if they could discern from the samples that it was endometriosis, but they did know it was benign beforehand.

Do you feel you are receiving better care and understanding from your doctors today?

Melanie: Not really, no. I have been under the care of a gynecologist knowledgeable about endometriosis for the past three-quarters of a year. However, before that, I had to go from one doctor to another, listening to distressing comments, particularly concerning the pain and discomfort below the belt.

Unfortunately, it is often the case that patients are not taken seriously for an extended period, and we have to endure much suffering. Why do you think this disease is still so underestimated?

Melanie: I don’t know. We have a local medical practice run by a couple, both gynecologists. I used to consult the husband, and he informed me that his wife also had intestinal endometriosis. She sought treatment at a specialized clinic for endoscopic surgery. I have a friend with endometriosis who consulted this lady, and even though this gynecologist herself is affected by the condition, she didn’t diagnose it in my friend and instead dismissed her. Another gynecologist in our town, whose wife has adenomyosis, also doesn’t take endometriosis seriously. I visited their office once because I was in excruciating pain and couldn’t stand. I ended up crying and waiting for four hours as an emergency patient because I had missed my appointment time. I was left there without any assistance.

“If I need to use the bathroom, I can’t wait; I must go. Whenever I go out, my first instinct is to locate the nearest restroom.”

It’s genuinely frustrating.

Melanie: Yes, it’s an absolute outrage. I work in healthcare myself, and I can’t help but think that the issue isn’t adequately funded or supported by health insurance companies, so there’s no strong advocacy for it. The Endometriosis Association provides flyers and informational material that can be distributed, but many doctors’ offices are not interested in raising awareness about endometriosis. They don’t want patients to consider that they might have this condition.

It is just like your experience. You have symptoms that would not immediately point to a gynecological issue, so you visit your family doctor, only to find out that they have never heard of endometriosis. I often discuss this with doctors, and I have heard more frequently that they are trying to educate family doctors through conferences and other events to increase awareness. However, there are still too many who remain uninformed. Many also do not realize how endometriosis and its treatment relate to other conditions that require hormone therapy. There is so much more that needs to be done, and it is genuinely alarming.

What symptoms are you currently dealing with, and how do they affect your daily life?

Melanie: My primary symptoms are connected to the secondary conditions. Intestinal adhesions are causing me severe problems. Last October, I decided to have my uterus, fallopian tubes, and one ovary removed because I no longer wanted to take the pill. All the medications and hormones had led to severe depression. That’s why I opted for the hysterectomy. Endometriosis was discovered again on the roof of my bladder. However, the most debilitating aspect is the adhesions, and we can’t pinpoint the source of the pain. I can say that the pain is consistently linked to digestion. I always know where the food is in my intestines or if there’s air in a particular area. I’m in pain all the time, and I have to be cautious about what and how I eat, ensuring that I drink enough to avoid making things too solid. When I need to use the bathroom, I can’t wait; I must go immediately. Whenever I go somewhere, my first instinct is to locate the nearest restroom. My depression also adds to my discomfort, but it usually goes hand in hand with the pain. If I experience abdominal pain, I also have a depressive episode, or vice versa.

One faces significant limitations in daily life, particularly in dealing with issues like using the restroom. In the morning, it is impossible to determine whether you are in for a good or bad day until after you have eaten, and then it becomes a matter of whether you will have to make a hasty retreat. This can even lead to the need to cancel appointments, causing considerable inconvenience.

Melanie: Absolutely, it’s also a challenge at the movies. How many times have I had to exit when a movie ran longer than expected hastily? I’ve even given up sitting in the middle, opting for an aisle seat so as not to inconvenience others when I need to step out. This situation extends to various scenarios, including the struggles during the pandemic to find a restroom. At work, I have great colleagues, but not everyone truly understands the frequent need for bathroom breaks. I also deal with issues related to involuntary bodily functions occasionally, like unintentional flatulence. I try to brush it off, but it’s something I can’t control. The doctor reassured me that it was not a big issue and a natural occurrence.

I can relate to that! I have had my share of uncontrollable flatulence as well. We must discuss this openly because many women reading this interview might identify with these challenges. While it is normal to pass gas, the lack of control and the embarrassment of it happening at the worst times can be pretty frustrating. You step onto a train, and “pffft,” something slips out, and the people around you are unaware of your condition being the cause of this situation.

Melanie: Yes, it can be awkward in professional settings, too. I’ve been in client meetings where I accidentally passed gas. I asked the doctor how he would feel if he were in a meeting and the salesperson was suddenly dealing with flatulence. He couldn’t deny that it would be uncomfortable.

How have the people around you reacted to these challenges? I assume your husband has been supportive since he assisted with the research. How do your friends and family cope with it?

Melanie: Overall, I’ve received mostly positive support. My parents had the most difficulty with it, primarily because I don’t have any children. We used to have the desire to have children, but we refrained from hormone treatments because I was concerned about my stomach issues. It was especially tough for my mother because she couldn’t become a grandmother. Her friends would share baby pictures and stories about their grandkids, and she couldn’t participate in those conversations. On the other hand, my friends have been understanding and supportive. The most difficult challenge has been at work. While a broken arm is visible and understandable, stomach issues aren’t as apparent.

Absolutely. Are there any daily routines or habits that have proven helpful in managing your endometriosis?

Melanie: I’ve incorporated psyllium husks into my daily routine, and practicing yoga has been immensely beneficial. When dealing with abdominal pain, it’s natural to hunch over, but it’s essential to focus on stretching, even the scar tissue. Meditation has also played a significant role in my coping. I had an excellent yoga instructor, and together, we developed a unique technique. I visualize a little elf with a soothing ointment, and I breathe it in. In my imagination, this elf applies the magical ointment to the areas that are particularly sensitive in my abdomen. It might sound unusual, but it genuinely helps me. Additionally, relaxation techniques, warm baths, and a heating pad have been part of my self-care routine.

What actions are you taking to raise awareness about endometriosis?

Melanie: I would love to do more, but it’s challenging for me due to my struggles with depression. However, I participated in a campaign led by Nadine Grotjahn, where I had my photos taken. I was the only one who felt comfortable showing my scarred belly, as it’s a significant part of my story. I have numerous scars. Aside from that, I engage in open conversations about endometriosis, displaying awareness stickers on my car and a yellow ribbon on my handbag. I’m committed to discussing endometriosis and my experience with depression openly and honestly.

That is also vital. What inspired you to participate in Nadine Grotjahn’s campaign?

Melanie: I found it an excellent opportunity to bring awareness to endometriosis on a larger scale and make it a prominent topic. Given my struggles with depression, it’s often challenging for me to engage in more demanding activities. I know some people who actively distribute flyers, engage in discussions with doctors, and work tirelessly to raise awareness. Currently, I can’t do that. However, having photos taken for the campaign didn’t drain my energy. I drove there, listened to an audiobook on the way, and spent a day participating.

It is a one-time commitment to be part of the campaign. When distributing flyers or taking on more active roles, you must constantly motivate yourself. “Today, I have to get up” becomes a real challenge, especially when battling depression, which often saps your motivation. We should not underestimate ourselves because we cannot do as much as others. The key is to keep discussing endometriosis in our personal lives and make it a prevalent issue. When friends mention severe period pain, we can also gently suggest that it could be endometriosis if the pain is beyond the usual range. It is these small steps that can make a significant difference.

Melanie: I also educate my two nieces, aged 17 and 20, about endometriosis. I tell them that when their friends experience pain, they should take it seriously and suggest, “This might be a condition like what your aunt has.” I recall a former boss talking about a colleague who was frequently ill during her period. Unfortunately, people made fun of her and accused her of being lazy. In reality, she might have been experiencing what I go through.

“Don’t dismiss it! Get informed and take your health seriously! You’re not imagining things!”

You have made a critical point at the beginning. Many of us grew up believing that pain during menstruation was normal, but it is not. Fainting from pain is not normal, and experiencing constant cramps outside your period is not normal either. Sadly, many patients have to endure such dismissive attitudes.

Melanie: I’ve been in pain for so long that I began researching pain management. At one point, I became pain-free and realized that I had been in pain all the time without fully realizing it. It had become so ingrained in my daily life that I didn’t consciously recognize it anymore. It only became apparent to me after experiencing relief from pain medication. It’s somewhat alarming and bewildering.

The more pain you endure, the higher your pain tolerance becomes. Additionally, you might not always reach for painkillers for every ache, as you may resist overloading your body with medication daily, especially when you’re aware of the impact on your stomach and intestines.

Melanie: Yes, exactly!

So, what advice would you offer to other women dealing with endometriosis?

Melanie: Don’t let others dismiss your experiences, and educate yourself. Seek out books on endometriosis; there are excellent resources available. I believe that understanding the origins of the condition, its potential impact, the role of minerals and vitamins in your body, and the physiological changes you undergo can provide you with valuable insights. Please don’t ignore it! Get informed! And take your health seriously! You’re not crazy!

You have made an excellent point about the importance of taking oneself seriously. It is indeed a form of gaslighting when you repeatedly hear that your experiences are not as significant as they are. Eventually, you begin to doubt yourself and question whether others might be right, even though your reality contradicts their perspective. It is essential to prioritize taking yourself seriously.

Melanie: I believe I’ve gained a profound understanding of my body through yoga and physical therapy. Taking yourself seriously is crucial. Despite having only one ovary left, I’m aware of the cyst I have, and I can effectively communicate the pain and its extent to my doctor. I know I’m not imagining things.

What are your hopes for the future? What changes would you like to see?

Melanie: I hope for improved education and increased support from health insurance companies, similar to what’s provided for other ailments. I was informed by a surgeon at a hospital that endometriosis is a complex and time-consuming condition to operate on, yet the hospital receives relatively little funding for it. If a cancer patient came in with a malignant uterine tumor, the surgery would be prioritized and better funded. I don’t want to diminish the importance of cancer, but there needs to be fairness in funding that considers the time and complexity involved. When I hear about the duration of surgeries from acquaintances, I can’t help but think that this also needs proper financial support.

I often discuss research with doctors, and they mention that more and more funding is directed toward oncology, mainly because there is more significant profit potential in that field.

Melanie: It’s pretty surreal how health has turned into a competition!

Yes, there should be no comparisons in these situations.

Melanie: Exactly. I struggled with this for a long time because, of course, I was relieved not to have cancer. But I still wanted to be taken seriously.

It should never turn into something like, “Mine is worse than yours because I have cancer, and you do not.” Unfortunately, these comparisons can occur among patients. As an individual with endometriosis, you might hear someone say, “What do you have? I have cancer.” But there is no valid basis for comparison. Everyone suffers, and everyone experiences pain. With cancer, there is no guarantee of a fatal outcome. Although treatment can be prolonged, endometriosis is a chronic condition, and you have been dealing with it for a long time and will continue to do so.

Melanie: I was also shocked to learn that the doctor at the hospital was treating 70-year-olds with endometriosis who had been given estrogen treatment for menopause. I’m 47 now, and I’ve had my uterus removed. I’m going through menopause, and traditionally, this would be treated with estrogen, but I can’t take it because of the endometriosis. I wish that there would be a solution to make menopause more manageable without affecting endometriosis, as I fear that it could trigger further issues.

We hope there will be advancements in the future, and it is a shared goal for many doctors to find non-hormonal solutions. There is hope that things will improve.

Thank you, Melanie, for this interview. It has been great sharing with you, and it is always beneficial to hear others’ stories and find common ground as patients. Hopefully, we can convey to others that they are not alone in their struggles.

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