Endometriosis on the Pelvic Nerves: An Interview with Prof. Ibrahim Alkatout

Today, I had the opportunity to discuss with Prof. Ibrahim Alkatout the intricate issues related to endometriosis on the pelvic nerves.

Dr. Nadine Rohloff: I am delighted to be here today with Professor Ibrahim Alkatout. Our focus of discussion is endometriosis on and around the pelvic nerves. I am privileged to have an esteemed expert joining me. Perhaps, Professor Alatout, you could briefly introduce yourself.

Prof. Ibrahim Alkatout: Thank you very much, Nadine, for your kind introduction. My name is Ibrahim Alkatout. I am 44 years old, and I have been a part of the medical staff at the University Hospital Schleswig-Holstein for 17 years. My journey began in pathology, then extended to general surgery, and for the last 14 years, I have been working in the Department of Gynecology and Obstetrics. Over the past 14 years, I have specialized in minimally invasive surgery and have been actively involved in our endometriosis consultation and level III endometriosis center. For nearly a decade now, I have been deeply engaged both scientifically and clinically in the study of pelvic anatomy, specifically focusing on the pelvic nerves. My path has taken me from anatomy to pathology and its connection with the clinical aspects, particularly related to the pelvic nerves, which has now become a core focus of our work in Kiel.

Dr. Nadine Rohloff: Indeed, that’s fascinating. Let’s start with the basics – what exactly do the pelvic nerves do, and where can they be found?

Prof. Ibrahim Alkatout: The so-called pelvic nerves can actually be divided and differentiated further. There are two main subsections. There are the so-called somatic nerves. They have an origin in the spinal cord as nerve fibers and extend as nerves to the respective muscles, into the leg, for example, enabling voluntary movements. In the shoulder, somatic nerves extend into the arm and govern its movements. They have an origin and a terminal organ, primarily the muscles. This is how you can remember it. Somatic nerves are under voluntary control, meaning a person can intentionally decide to raise or lower their fist by deciding, “I want to raise my fist, or I want to lower it.” This is a completely intentional movement, requiring the involvement of nerves. Such voluntary movements are facilitated by somatic nerves, which also pass through the pelvis.

Now there is a second group of nerves found anatomically in the pelvis, known as involuntary nerves, commonly referred to as autonomic nerves in medical terms. As the name suggests, these nerves are primarily active involuntarily, meaning they function without conscious control. An excellent example of this is the movement of the intestine, which continuously operates day and night after we’ve eaten, transporting food from A to B without us needing to instruct it to do so. It happens automatically. Another instance of involuntary nerve influence is the filling of the urinary bladder. When the bladder is full of urine, it sends a signal to the brain, prompting us, “Gee, there’s quite a lot of urine down there now, why don’t you visit the restroom?” Once we do, the bladder empties itself automatically. Though we can still intentionally attempt to strengthen or intensify this movement, the underlying mechanism operates involuntarily. Similarly, the control of the heartbeat is governed by involuntary nerves. No conscious effort is required for the heart to beat; it functions autonomously, beating around 80 to 90 times per minute.

We also have these two fundamentally different nervous systems in the pelvis. To elaborate further, the involuntary nervous system, known as the autonomic nervous system, primarily governs visceral functions. In the pelvis, the viscera include the urinary bladder at the front, the uterus and vagina in women, situated in the middle, and the intestine with its rectal outlet at the back of the pelvis. On the other hand, intentional nerve movements referred to as somatic ones, mainly consist of fibers that traverse the pelvis and extend into the legs. For example, they control the upright gait or the gluteal muscles at the back of the pelvis, contributing to balance during activities such as walking, standing, and sitting.

About Prof. Ibrahim Alkatout

Prof. Ibrahim Alkatout has been a member of the medical staff at the German University Hospital Schleswig-Holstein for 17 years. During his tenure, he has worked in pathology and general surgery before dedicating the past 14 years to the Department of Gynecology and Obstetrics. Alongside his team, he actively participates in the endometriosis consultation hour and in the Level III Endometriosis Center. For nearly a decade, Prof. Alkatout has been deeply engaged in both scientific and clinical aspects of pelvic anatomy and pelvic nerves. His focus has extended to studying pathological changes in association with the pelvic nerves, which has now become one of the focal points within the clinic.

Dr. Nadine Rohloff: Thank you very much for this clear explanation. What that ultimately means is that pelvic nerve endometriosis can affect different areas or different nerves, leading to a range of symptoms. Could you elaborate on the specific symptoms that may arise when the nerves are affected?

Prof. Ibrahim Alkatout: When we associate pelvic nerve changes with endometriosis, it5 becomes a challenging area. Despite our experience and advanced imaging capabilities, we often encounter difficulties. In some cases, we can only assume possible involvement of the pelvic nerves, and distinguishing which parts of the nerves are affected can be complex. Additionally, previous surgeries and adhesions in women can further complicate the diagnosis. While we have clear links to pelvic nerve damage or change in some instances, we may not find any organic evidence of endometriosis. As a result, many women suffering from chronic endometriosis and lower abdominal pain may also experience related symptoms or pelvic joint problems. These conditions can radiate into the back and lower abdomen, mimicking pelvic nerve changes. In cases where we can clearly identify and demonstrate pelvic nerve involvement, we can be optimistic in saying, “Yes, we have a reason here. This reason could explain most of your symptoms, maybe all of them, and we can fix this. We have a target that we’re going to attack surgically, pharmacologically, and address that.” However, in numerous cases, we encounter symptoms that align with potential pelvic nerve issues, yet we cannot find evidence through imaging or surgery. These situations present significant challenges, as we acknowledge that we still have much to uncover about endometriosis in its various manifestations and complexities. It remains a disease with a chameleon-like nature that demands further exploration.

Dr. Nadine Rohloff: I understand the complexity of the situation. Can you provide an example of typical cases where you found evidence of active endometriosis? What symptoms would be indicative of an active situation?

Prof. Ibrahim Alkatout: Of course, the most remarkable cases are when we say, “We have a neuronal change, caused by nerve damage, and also have evidence of endometriosis,” for example through ultrasound, or even better, a detailed MRI. We carry out an MRI examination because we are unsure. Let’s consider a scenario where an MRI reveals an endometriosis node situated deep, nearly on the pelvic bone, and close to the nerve exit zones. If we observe alterations in the musculature or sensation right along the path of that nerve, we can say, “Gee, there’s something present there,” and we can define it relatively clearly. In such cases, we know that addressing that specific point during surgery and intervention is essential. We cannot simply look in and find nothing or proceed with standard procedures. We must acknowledge the complexity and challenge of the case. It has to be operated on by a team that knows how to do it, that knows how to do such operations, and also how to deal with possible complications. That’s just an example. However, it becomes much more difficult when the situation is more ambiguous. This often occurs when it involves the pelvic nerves that supply the visceral organs, rather than the somatic nervous system. Near the organs, the nerves intertwine, making it harder to pinpoint a specific cause-and-effect relationship. These situations pose significant challenges, and we may not always have a direct, one-to-one correlation where the removal of an identified issue completely resolves the problem.

Dr. Nadine Rohloff: Especially with somatic symptoms, such as bladder filling pain, pain during emptying the bladder, and digestive issues, it becomes more challenging to attribute them solely to endometriosis. For instance, affected nerves can cause pain that radiates into the calf, a location that may not immediately suggest a connection. In such cases, it’s crucial to consider other possibilities, as the pain might originate elsewhere or be related to different factors altogether.

Prof. Ibrahim Alkatout: Exactly. Let’s take the example of ‘pain in the calf’ and its strong association with the menstrual cycle. When a patient reports severe pain during menstruation and mentions calf pain, it raises concerns. While calf pain during menstruation might be unusual, many women experience recurring discomfort during menstruation since their adolescence or early adulthood, which can later manifest in different or unfamiliar locations. This can be confusing for patients who find it challenging to relate their experiences with those of others, making it more difficult to fit into a specific clinical picture. Moreover, diagnosing such cases becomes complex. Because in diagnostics we typically focus on the pelvic area and look for anatomical abnormalities in the urinary bladder, ureter, kidneys, intestine, and rectum. However, when symptoms extend beyond the pelvic region, we may need to explore areas where gynecologists may not feel as proficient, such as in neurological examinations. For instance, in the calf pain example, a neurological examination might be necessary to determine the exact nature of the pain, its impact on skin sensation, deep leg sensation, or any impairment in movement or musculature. This interdisciplinary aspect poses challenges, as gynecologists may not always feel as comfortable or systematic in examining areas beyond the lower abdomen. Consulting a neurologist in such cases might be helpful, but they might not be familiar with such symptoms related to endometriosis and could miss essential findings inadvertently. Therefore, such situations underscore the need for collaboration among specialists to ensure comprehensive evaluations and appropriate treatment approaches.

Dr. Nadine Rohloff: Naturally, neurologists tend to search for typical causes for such complaints. Regarding diagnostics, what other elements are included in the standard diagnostic process when a patient presents with potential pelvic nerve involvement?

Prof. Ibrahim Alkatout: The diagnostic process remains fundamentally similar to that of any other endometriosis patient, with the conversation remaining of utmost importance. Rarely does a patient solely present with a neurological issue without any other symptoms. In most cases, the disease manifests as a complex combination of various factors, making it essential to allocate sufficient time for details. This allows patients to articulate their concerns, ask relevant questions, and narrow down their specific areas of suffering and impaired quality of life. Each case is highly individual, and understanding these nuances is crucial. What is it about what I may have that is bothering me? Where is my quality of life impaired by my disease? How long have I had this? What have I already tried myself? What am I willing to risk? What am I willing to accept? That’s why I believe that approximately 70% of the diagnosis can be gleaned through conversations alone, though this is a rough estimate. Following that, a regular gynecological examination is performed, which often confirms the initial suspected diagnosis based on the conversation or may dismiss it. Accepting the possibility of uncertainty is also vital in some cases. If there remains uncertainty, despite the best modern ultrasound technology, an additional imaging measure such as high-resolution MRI can be beneficial. This specialized MRI allows detailed visualization of potential deep-seated involvement and aids in exclusive severe cases of endometriosis, particularly those affecting the spinal cord or nerve exits from the spinal cord. These regions are often challenging to determine accurately with ultrasound alone. To further narrow down the diagnosis, we also rely on a basic neurological examination. In most cases, this examination can be conducted without requiring additional aids and proves highly valuable in refining our understanding of the situation.

Dr. Nadine Rohloff: We have a question from a patient who experiences pain in her legs, but their MRI results were unremarkable. You mentioned that a high-resolution MRI is useful in ruling out severe courses or significant involvement. Can you definitively rule out such severe involvement with an MRI, or would you say it can only help rule out major infestations?

Prof. Ibrahim Alkatout: An MRI can detect severe cystic findings of a larger extent or internal varicose veins that might be pressing on the nerves in this region. However, it’s important to note that interpreting MRI results requires expertise and experience in gynecological radiology. Not all radiologists have specialized knowledge in this area, and the quality of MRI results may vary between different centers and practices. Performing high-resolution, complex MRIs with contrast medium via the intestine or the vagina is a challenging process and is often conducted in study concepts. Only a few centers are equipped to perform these types of MRIs with the required precision. In our own research cohort, we found that radiologists need exposure to over 50 cases to make sound and reliable assessments of MRI results in this context. Therefore, while an MRI can provide valuable information, it may not always definitively rule out specific conditions, especially in complex cases involving pelvic nerve issues.

Dr. Nadine Rohloff: That’s a crucial point. Not all MRIs and radiologists are the same, especially when it comes to gynecological issues. For diagnostics and therapy, it’s essential to seek specialized centers. This becomes even more critical for endometriosis and pelvic nerve-related treatments. Could you please elaborate on the therapies you offer and why going to a specialized center is particularly important in these cases?

Prof. Ibrahim Alkatout: Endometriosis is often underestimated in its impact. From the onset of symptoms to the recognition of the condition, many years pass, resulting in significant suffering and reduced quality of life for many women. Severe endometriosis involving nerve structures can be highly complex. While some clinics may operate on these patients and achieve lasting improvements, it doesn’t always work for every case. We believe that for complex disease patterns requiring comprehensive surgical or holistic management, we should give it similar importance as we do in oncology with minimum treatment volumes. It’s crucial to ensure that the treatment team handling these cases has the expertise and confidence to address complications that may arise. At our center, we have a highly trained team with extensive experience in minimally invasive surgery and robot-assisted procedures, which we provide to all patients who need it at no additional financial cost. With modern surgical options, we aim to achieve the highest possible success rate for our patients. One common issue we encounter is when pelvic nerves are involved, and the uterus is removed due to its disease value, but the problematic foci remain in hard-to-reach anatomical locations. This might be due to a lack of surgical expertise or the risk of complications. Any follow-up operation or therapy after a failed primary treatment can significantly impact the patient’s physical integrity and quality of life. Through the establishment of specialized centers and the classification of endometriosis centers at different levels, we aim to ensure that patients receive the best care possible. We continue to work towards raising the standards of care and successively improving patient outcomes.

Dr. Nadine Rohloff: We often receive inquiries about finding neuropelveologists?” Large endometriosis centers are usually a good place to start, but when searching for “neuropelveology” on Google, you may not find as much relevant information. We get many inquiries asking, “Where can I go?”

Prof. Ibrahim Alkatout: I might be able to provide some insight on this matter in closing. The term “neuropelveologists” was coined by Professor Possover, and he is a prominent figure in this field. A quick Google search on neuropelveology will lead you to Mark Possover. Based in Zurich, he runs his own institute and is renowned for providing the best neuropelveological care in the world for both women and men with related conditions, particularly endometriosis in women. However, not every patient can be treated in Zurich, due to various reasons, including the sheer volume of cases and the fact that Professor Possover’s work is not funded by the German healthcare system. As a result, he had to switch to a private healthcare system in Switzerland, which presents a financial challenge for many female patients seeking his expertise. Despite this, it must be emphasized that for complex neurological symptoms related to endometriosis, Mark Possover in Zurich is undoubtedly one of the best experts globally. Since not everyone can go to Zurich for treatment, Professor Possover offers courses in minimally invasive surgery, similar to what we do. He founded the ISON institute, which trains experienced physicians worldwide in neuropelveology. In Germany, a few certified doctors have received training from him, and they are typically associated with large endometriosis centers. These centers are your best bet for receiving adequate advice and treatment. In some extremely complex cases, we have no hesitation in suggesting considering intensive diagnostic in Switzerland and potentially returning for treatment. The stakes can be high, particularly in severe infestations that require complex operations, where complications can be very serious, making it difficult to quantify the potential risks. This remains an unresolved dilemma, making it incredibly valuable to have someone with the expertise and experience to navigate such cases successfully, I have been fortunate to be the first in the world to deal with these challenges, and I am willing to share my extensive knowledge with other experts, allowing them to benefit from my decades of experience. It is a promising development, but the bottom line is that the demand for neuropeveological counseling exceeds the current supply, and accessing an adequate counseling center is not always easy.

Dr. Nadine Rohloff: That’s a positive outlook, So, for a rehabilitation clinic, it’s crucial to consider specific needs for endometriosis and endometriosis pelvic nerve patients. Is there any particular aspect to focus on when choosing a rehab center or exercises?

Prof. Ibrahim Alkatout: Certainly. Rehabilitation plays a vital role in the comprehensive treatment of endometriosis. In Schleswig-Holstein, we are fortunate to have two certified endometriosis rehabilitation facilities, located in Ratzeburg and Bad Schwartau, which we highly recommend. These facilities prioritize personalized care and develop individual, sustainable treatment plans for each patient. They encompass nutrition, behavior, psychosomatic approaches, and medication management. With a holistic approach, more than 90 percent of our patients who attended these centers reported long-term and sustainable benefits, finding effective ways to manage their endometriosis.

Dr. Nadine Rohloff: Absolutely, individualized endometriosis treatments are essential. For those listening, do you have any other tips you’d like to share?

Prof. Ibrahim Alkatout: Trusting your instincts is crucial. If a woman’s own feeling doesn’t align with the diagnosis or proposed management, I strongly recommend seeking a second opinion. It’s worth waiting or postponing to find the right solution. The gut feeling of these affected women holds immense value, and they are rarely mistaken. I feel truly sorry when they receive incorrect treatment due to external circumstances or mismanagement, for which the patients are least to blame.

Dr. Nadine Rohloff: That is a very nice closing statement. I have nothing more to add. Thank you very much, Professor Alkatout, for the fascinating insights.

Prof. Ibrahim Alkatout: Thank you, and best wishes to you as well. Thank you very much!

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Dr. med. Nadine Rohloff