“I’m not going to let endometriosis define the rest of my life!”

Interview with Anna Henn

Anna, a young and enthusiastic athlete who excels in her profession, faced a significant setback when she received a diagnosis of endometriosis a few years ago. Not only did she fight for her mobility, but she also fought for her life. Today, despite persistent pain and limitations, she approaches life with unwavering courage. In our interview with Anna, the handball player who serves as the face of Nadine Grotjahn’s “Endo gut, alles gut” campaign, she opens up about her journey with endometriosis and shares insights into her daily life with living with this chronic condition.

Hi Anna, we appreciate your willingness to discuss your experience with endometriosis. What does this condition mean to you?

Anna: Endometriosis has been a significant presence in my life, bringing about considerable limitations. The journey to diagnosis was long and challenging, with me often being unfairly perceived as a malingerer. Particularly in the last two to four years, it has profoundly influenced my life and future. For me, endometriosis represents an ongoing struggle, both with healthcare providers and within myself.

Could you share some details about yourself? How old are you? What is your profession, and what does your daily life entail?

Anna: I’m 30 years old, hailing from Gummersbach, and work as a physiotherapist. Handball has been an integral part of my daily life for many years, essentially defining who I am. Additionally, I’ve been a physiotherapist for a men’s handball team for a decade, making it a primary focus in my life.

Can you share the medical history details leading up to your final diagnosis? You mentioned being mislabeled as a malingerer for quite some time. What was the most challenging aspect for you during that period?

Anna: My journey with endometriosis began at the age of 14. I had recurring stomach pains, but they weren’t initially severe. Then, while on a school internship at my father’s company, I suddenly experienced excruciating abdominal pain to the point where I couldn’t walk. We rushed to our family doctor, who performed and discovered what appeared to be a large tumor. I was immediately admitted to the hospital, where they determined that the tumor was about the size of a tennis ball. I underwent surgery right away with an abdominal incision. They referred to this tumor as a conglomerate tumor. It had enveloped the ovary, necessitating its removal, as well as that of the fallopian tube. I was informed that the tumor was benign and not cancerous, and that seemed to conclude the matter. They also asked if I wanted psychological support due to the removed ovary and potential fertility concerns.

However, I continued to experience persistent lower and upper abdominal pain, with my pelvic issues being the most distressing. I also had discomfort in my sacral joint and tailbone. These symptoms were often attributed to the extensive adhesions resulting from the major operation. Later, from a psychotherapeutic perspective, it became apparent why this was the case. During my menstrual periods, the pain was sometimes so severe that I would vomit, run a fever, or even faint. My gynecologist dismissed this as a normal part of being a woman, which was deeply frustrating.

I then entered into a relationship with my now ex-husband, and we had plans to start a family. Given that I only had one ovary, I was advised to try to conceive as soon as possible. Fortunately, I did become pregnant reasonably quickly, but tragically, I suffered a miscarriage at 12 weeks. I returned to my gynecologist at the time, who, shockingly, allowed me to carry the deceased fetus in my womb for over a week and a half before sending me to the hospital. This was an incredibly traumatic experience, and I felt utterly detached from reality during that time.

Following this, I completely lost trust in my gynecologist and decided to change doctors. I recounted my medical history and concerns to the new physician, whose reaction was one of astonishment. He suspected that I might be dealing with endometriosis. Even as a physiotherapist, I had never encountered this condition, so I decided to research it online to learn more.

I underwent my first laparoscopy at the endometriosis center in Cologne, where the diagnosis was officially confirmed. The surgery was extensive, revealing that my entire pelvic region was affected by endometriosis, even though it had initially appeared to be less severe. Following the diagnosis, a challenging journey began. I was advised to pursue artificial insemination relatively quickly, and I underwent two Intracytoplasmic Sperm Injection (ICSI) procedures, which involved daily hormone injections. Unfortunately, this hormonal treatment seemed to exacerbate my endometriosis symptoms, leading to progressively worsening pain.

From that point on, I found myself undergoing surgery every year, and I eventually had to come to terms with the heartbreaking reality that having children might not be possible, which also played a role in the dissolution of my marriage. In 2019, during my last surgical procedure, an accidental injury occurred, resulting in a significant loss of blood as my great iliac vein was severed. My survival was nothing short of miraculous. At one point, the consideration of amputating my left leg arose, but ultimately, I received an artificial vein prosthesis, which, thankfully, has held up to this day.

Afterward, I spent two days on a ventilator in the intensive care unit, followed by yet another surgical procedure. A day later, my bladder ruptured, necessitating an emergency operation. I spent the subsequent two months on a rollator for mobility. As an athlete, coping with these physical setbacks was incredibly challenging, and it took me nearly a year to regain a sense of normalcy.

It is incredibly tough, mainly when you rely on sports and know your team depends on you. Did all of this take place at Weyertal in Cologne?

Anna: I received treatment at Weyertal and was very satisfied with the care there. Of course, complications can occur, and other doctors later confirmed that my case was quite complex. Patients are typically informed in advance about the potential risks of surgery, including complications. With endometriosis, how the condition will manifest is unpredictable, so there’s always an element of uncertainty. After each surgery, I would check under the covers because my greatest fear was waking up with a stoma. Psychologically, that would have been highly challenging for me to cope with.

I can relate to that fear. I also received treatment at Weyertal and had four surgeries, including a particularly extensive one in 2016. While it was possible to perform these procedures laparoscopically, there was always a risk of waking up with an artificial bowel outlet. Fortunately, I did not have to check under the covers because the bowel surgeon reassured me immediately upon waking, saying, “Mrs. Briese, everything is still the same.” However, I completely understand the fear, and I greatly admire those who live with an artificial bowel outlet.

Anna: It’s one of the most challenging scenarios, particularly for someone in my profession as a physiotherapist. Having to deal with patients with stomas, I know that it is already a substantial limitation, especially for a young person.

How did the people around you respond to your symptoms, and what were their reactions to your diagnosis? Were you able to openly discuss your health issues, or did it remain a somewhat taboo subject?

Anna: I’m not the type who readily shares my suffering; I tend to be more of a doer, trying to manage everything independently. This is why it surprised everyone when they realized how bad things were because I always seemed to be everywhere and in good spirits. Within my relationship, it became a significant issue. Sometimes, I had to resort to using a hot water bottle and had no desire to go out to do things. I used to be very spontaneous, but gradually, I began to impose limitations on myself. Intimacy in a partnership is particularly affected by this condition, which can be challenging. Finding a partner who can understand and cope with the limitations, especially the impact on one’s sex life, can be very difficult. My ex-husband did his best, but there comes a point where everyone gets frustrated.

At my workplace, my colleagues and boss were consistently understanding and promptly accommodated my needs when I couldn’t walk. I consider myself fortunate in this regard. My parents, too, have been through hell, but overall, my immediate environment has handled the situation well. The past year has been especially trying. Without the support of friends and family, I don’t know how I would have coped.

What health issues are you grappling with, and how frequently do you experience them? Do you have pain-free days as well?

Anna: I’m still contending with incontinence stemming from bladder issues. I can manage it, but it’s inconvenient. I also face significant limitations with my legs. While it was initially suggested that I might never be able to jog again, I’ve managed to return to playing handball. My cardiologist isn’t particularly thrilled about it since I’m on blood thinners, but I refuse to let it hold me back. However, if I climb two flights of stairs, my blood circulation is disrupted, resulting in pain and swelling in my leg. I constantly have to wear compression stockings, and people inevitably notice when I wear something short.

Currently, I’m required to take medication. I’ve always been resistant to hormonal treatment, but recently, I was told it was either that or I’d have to undergo artificial menopause. The pain is a constant companion that doesn’t seem to correlate with my menstrual cycle. I’m not a fan of pain medications, and I’ve tried everything from Tilidine to Pregabalin. But if I take even a tiny dose of Tilidine, it leaves me unfit for everyday life. The only medication I’ve consistently tolerated is ibuprofen, but I can’t take it due to the blood thinners.

I once tried CBD, but it didn’t yield the desired relief. Currently, I’m fighting to be prescribed a THC-based treatment, as I’ve tried it before, and it significantly improved my quality of life by reducing my pain without unwanted side effects. With THC, I didn’t experience the high associated with other medications.

It’s not uncommon to hear about CBD oil and other additives being suggested as alternatives. However, if Tilidine has such a strong sedative effect, that can pose a challenge.

Why do you think endometriosis continues to be underestimated as a condition?

Anna: The issue lies in the fact that endometriosis isn’t visible, and society tends to downplay the significance of pain, particularly when it comes to women’s health. Almost every woman experiences some level of abdominal pain during her period, and it’s become so normalized that it’s no longer taken seriously. Women often share tips on how to cope with the pain because “they experience it too.” Even gynecologists can sometimes dismiss the pain as a regular part of being a woman. This is truly disheartening. Despite some recent advocacy for endometriosis, there is still a prevailing attitude that tends to belittle the experiences of women with the condition, as if to say, “Oh, come on, it’s just women’s troubles.”

What motivated you to become involved in Nadine Grotjahn’s campaign?

Anna: We first met during rehabilitation, and being in rehab together creates a different bond. We got along well, and Nadine was incredibly proactive in addressing the issues we were facing. We had a wonderful group during our rehab time. Nadine reached out to me and mentioned that she was planning something, and because my situation was somewhat atypical with my leg, she asked if I would be interested in supporting her campaign. From me, there was no hesitation. I had previously held the misconception that rehab was all about women complaining about their pain and dwelling in self-pity. However, my experience in rehab proved me wrong. Despite my initial reluctance, the interactions and shared experiences with other women were incredibly beneficial. So, when Nadine initiated the campaign, I was wholeheartedly on board eager to contribute.

You mentioned the difference between exchanging experiences and trying to address them rationally. Then, some consistently dwell on their suffering, like the woman in the hospital room with you who constantly found something new to complain about.

Anna: Yes, that’s indeed a challenge when individuals succumb to their chronic illnesses and make no effort to improve their situation. We encountered a similar thing during rehab. Dr. Knaut approached me at one point and expressed concern that she didn’t see me engaging well in the group, implying I might face difficulties. It was indeed challenging. Then, during a lecture, a new topic was introduced, and everyone immediately claimed, “Oh, I’m suffering from that, too,” and rushed over to discuss it. Dr. Knaut pointed out that not everyone suffered from the issue and emphasized the need for a more positive approach, which would be crucial for the women’s recovery. On the same day, during a conversation with the psychologist, everyone discussed what had been said. However, I had a different perspective and suggested, “If you feel so attacked, perhaps you should engage in more self-reflection.”

I initially joined Facebook groups to seek support, but it negatively affected me. While these groups can benefit many people, they had the opposite effect on me. It’s a matter of personal choice and what works best for each individual.

What other strategies do you use to manage endometriosis in your daily life? Engaging in sports is one way, but diet can also play a role. What approaches have you found helpful?

Anna: Diet isn’t a significant focus for me. I did try going gluten-free at one point, but I was constantly hungry.

As an athlete, you need the calories.

Anna: My diet could undoubtedly be better. I don’t pay much attention to it and eat whatever I want.

I see an osteopath once a month, and I regularly undergo physiotherapy. A friend of mine helps me by providing a prescription for physiotherapy sessions, but I recognize that not everyone has that opportunity. While sports are great, I sometimes tend to overdo it. I’ve also had positive experiences with THC drops, and they work well for me.

Is there anything specific you have learned through your journey with endometriosis that you would like to share with other women facing the same condition?

Anna: It’s a complex question. Ultimately, how you deal with endometriosis is a highly individual experience. I’ve often been told I needed to be more accepting of the condition, but my perspective is different. I don’t want to accept it; I don’t want endometriosis to dictate my life. I strive to carry on with what I want to do. Of course, learning to listen to your body is essential, and having a good sense of body awareness is incredibly important. As an athlete and a physiotherapist, I would argue that you likely possess that quality. You must come to terms with your limitations, but I refuse to accept the condition itself. I won’t surrender to it. Many people struggle with having a healthy body image, but if you can learn that, you can adapt and manage the condition effectively.

What are your hopes for the future?

Anna: I wish for a future where people don’t have to fight so hard for every aspect of their healthcare. No matter what it’s about, it often feels like you’re constantly battling and appealing decisions. You run from one place to another, and they refer you back and forth, which can be incredibly frustrating. Doctors have no clear guidance, and many aspects are treated as gray areas. For instance, when it comes to getting a prescription for physical therapy, there’s no specific category for endometriosis patients in the therapeutic products catalog, making it difficult to access necessary treatments. When I visit my family doctor, they refer me to a gynecologist, but often, there’s no clear course of action.

You mentioned the application for a severely handicapped ID card. Did you apply for one?

Anna: Yes, I did apply for one at the rehab center. It was suggested to me there. Initially, I thought, “I’m not disabled; I don’t need it.” However, as an employee, having a severely handicapped ID card can offer certain advantages. I’m still associated with a hospital, and the representative for severely disabled individuals there helped me complete the application. Initially, I was informed that I would receive a 30% degree 0f disability (GDB). However, a catalog outlines which diagnoses correspond to which degree of disability. Endometriosis is defined vaguely, with three stages. Still, everything described under severe endometriosis applied to my case: sterility and involvement of neighboring organs, all of which could be supported by my medical records. Consequently, I filed an objection and provided detailed justifications based on my history. Three weeks later, I received my certificate of severe disability with a 50% degree, but it had a time limit of six years.

That is good. It is often said that it is an option, but it can also be a double-edged sword. On the one hand, there are advantages for employees, but on the other hand, there is a concern that if you ever apply for a new job and mention your disability, it might hinder your chances of getting hired in the first place. Employers might not explicitly admit that this is the reason for not hiring someone. Some job postings include clauses that suggest a preference for candidates with unique backgrounds or disabilities if they possess equivalent qualifications. However, in practice, this can be a challenging situation. It is unlikely that an employer would hire someone if they anticipate that the person will miss a significant amount of work due to their disability. This uncertainty often leads people to contemplate whether to apply for a severely disabled ID card.

Anna: I’ve heard similar concerns from others during rehab, and it’s indeed a challenging issue. I’ve been with my current job for ten years, so I haven’t had to navigate changing jobs. If I were an employer, I would likely consider such factors when hiring, especially if there was an equally qualified candidate without a disability. In my case, I didn’t have to worry about it because I knew I would be self-employed.

Being self-employed was also the right decision for me because it offers the flexibility to have days when I am not feeling well without having to justify myself to anyone. If it is a day with pain, it is a day with pain. As a self-employed person, you have more freedom overall. The terms “self” and “constantly” are accurate, but the trade-off is increased freedom. In our situation, I believe self-employment can be a good choice, provided that the nature of the work allows for it.

Seeing that you are motivated and resilient is excellent; not letting anything drag you into self-pity daily.

Anna: When it comes to self-employment, I did receive a lot of criticism from many people who thought it was a risky decision given my chronic condition. They asked, “What if you need another surgery and can’t work?” However, as you mentioned, it’s all about flexibility. I value the self-determination it offers me. When I’m not feeling well, I can take it easy. I don’t want endometriosis to dictate the course of the rest of my life.

And at just 30 years old, you have a long road ahead of you.

Anna: I’m in the prime of my life.