How to Deal with an Ill-Informed Doctor?

Today, our topic of discussion revolves around effective communication with healthcare professionals. While there are undoubtedly numerous knowledgeable and dedicated doctors, there are also instances where some may lack comprehensive understanding, particularly concerning conditions like endometriosis. In such cases, they may inadvertently convey inaccurate information, make hurtful remarks, or leave patients feeling unheard.

This article will delve into these issues, uncover the reasons behind their inaccuracies, and equip you with the knowledge to address them effectively when communicating with your doctor. We will also explore the circumstances in which you might consider seeking a new gynecologist or family doctor who genuinely supports your healthcare needs.

The text summarizes a Facebook Live session where I addressed a frequently asked question within our Facebook group.

This article primarily focuses on the challenges posed by ill-informed gynecologists who may provide incomplete or incorrect information about endometriosis, potentially leading to delays in diagnosis and treatment. Many individuals have sought guidance on how to respond as someone affected by this issue, how to navigate these situations, and when it might be appropriate to consider switching to a different gynecologist.

I am consistently taken aback by patients receiving partial truths or outright falsehoods from their gynecologists. Throughout my tenure at the endometriosis center, I have had numerous interactions with gynecologists through my work and in various continuing education courses. Initially, I assumed that these professionals were well-versed in the intricacies of endometriosis, especially given their specialized interest in the topic.

However, what is disconcerting, and something I frequently come across, is the tendency to not take pain, even during menstruation, as seriously as it should be. I want to emphasize that gynecologists are fallible humans like all of us. They may sometimes lack knowledge in specific areas. There is nothing inherently wrong with not knowing something and appropriately referring the patient to a specialist who can help. However, there is a significant distinction between not knowing, acknowledging it, guiding the patient accordingly—a practice I support—and downplaying symptoms or insisting on the accuracy of one’s knowledge without humility.

“You are imagining your pain…”

Frequently, I hear patients recount experiences where gynecologists have dismissed their concerns, suggesting that pain during menstruation is merely a product of their imagination. It hardly needs to be mentioned that such a statement is unequivocally false.

Mild discomfort during your period can be considered normal, but the pain often endured by those with endometriosis is far from ordinary. Suppose a gynecologist or family doctor tells you this pain level is normal. In that case, it may be worthwhile to assert that endometriosis is a medically recognized condition backed by physiological factors, and the pain you are experiencing is far from the norm.

However, it is essential to acknowledge that such statements can be disheartening, especially if you are uncertain about the root cause of your pain. In these cases, individuals may mistakenly believe their suffering is ordinary.

That is why many public figures, individuals living with the condition, and advocacy groups emphasize that severe period pains are anything but ordinary.

If you suspect you may have endometriosis, it is crucial to maintain confidence and, if necessary, redirect your energy toward finding a healthcare provider who understands your concerns.

Many patients also report the distressing experience of being told that their pain is imaginary or that endometriosis is a psychological issue. In such instances, the solution is the same: If you lack a basic understanding of this condition, it is time to consider changing healthcare providers.

Endometriosis is not a psychological disorder but a physiological condition within the abdominal cavity. While it can have psychological effects, it is not solely a psychological issue.

“But the endometriosis was removed – nothing can be left!”

In response to this assertion, it might be worth discussing the matter further with your doctor and presenting counterarguments. However, if it becomes too draining, seeking another medical professional may be more beneficial.

According to various studies, endometriosis can reoccur even after surgical removal, and the symptoms often persist chronically. Therefore, please do not let yourself be swayed by such statements!

Ideally, all healthcare providers, especially those specializing in women’s health, should be well-informed about endometriosis. Unfortunately, this is not always the case. Consequently, it is crucial to educate yourself independently, relying on information from reputable sources, to possess knowledge that empowers you and remains steadfast, regardless of any misguided statements you may encounter during medical consultations.

“You can only detect endometriosis on ultrasound – if there is nothing there, there is nothing there.”

This statement is inaccurate. Peritoneal endometriosis, in particular, is often challenging to visualize effectively through ultrasound. The most dependable method for confirming the presence or absence of endometriosis is through laparoscopy. While sure signs may sometimes be discerned via ultrasound, this is not always the case.

For instance, cysts are typically visible on ultrasound, and some specialized ultrasound experts can also identify adenomyosis with relative clarity. However, the visibility of endometriosis depends on the specific lesions present. There are instances where small endometriosis lesions, despite causing significant pain, remain undetectable on ultrasound.

Moreover, the healthcare provider’s expertise plays a crucial role in this regard. Physicians experienced in endometriosis are better equipped to recognize relevant signs, even during ultrasound examinations.

“Your pain is not cycle-related, so it cannot be endometriosis!”

This statement is also inaccurate. While lower abdominal pain during menstruation is the most prevalent symptom of endometriosis, it is crucial to understand that the absence of menstrual pain does not automatically rule out endometriosis as a diagnosis.

Many individuals with endometriosis experience pain outside their menstrual cycle. If this pain is frequent or persists even after surgery, it may be linked to endometriosis. In such cases, seeking consultation with an endometriosis specialist is a logical step.

Notably, symptoms like leg pain, though not commonly associated with endometriosis, can be linked to the condition.
Endometriosis often involves nerves and can attach to pelvic walls, where numerous nerves, including those responsible for leg innervation and muscle function, are located. This also encompasses nerves related to bladder function, potentially causing symptoms such as frequent urination and even motor difficulties in leg movement.

Sometimes, individuals experiencing regular leg pain are referred to an orthopedic specialist, which is a reasonable approach. However, suppose you already have an endometriosis diagnosis and begin to experience consistent leg pain. In that case, it is essential to consider the possibility of endometriosis-related nerve involvement and consult an experienced specialist at an endometriosis center.

Dealing with endometriosis that affects nerves requires the expertise of a skilled surgeon who is proficient in nerve-related procedures.
A specialized field known as “neuropelviology” focuses on these nerves and surgical interventions in the pelvic area.

“Some doctors are reluctant to make referrals.”

I find this a concerning issue because it suggests a lack of recognition of the problem. Additionally, it may reflect a practice where doctors who occasionally perform outpatient surgeries prefer to handle endometriosis cases themselves. While they may be proficient surgeons, it is essential to engage in honest discussions with such doctors regarding the nature of the surgery, particularly if it is a major procedure.

I recommend seeking a surgeon specializing in major operations when there is a strong suspicion of endometriosis. This can potentially prevent the need for two surgeries in the end. Sometimes, more extensive operations may involve other medical specialties or outpatient surgeons with expertise in less complex procedures.

However, if a doctor’s reluctance to make referrals stems from a lack of seriousness towards your condition or symptoms, it is time to consider seeking another healthcare provider.

This principle also applies to dismissive behavior from a doctor, such as suggesting that your symptoms are imagined and advising more exercise or dietary changes as the solution.

While exercise and diet can be beneficial, how such advice is presented matters. Adequately communicated, this guidance can be valuable.

However, I acknowledge that many women with endometriosis often feel frustrated because they are not taken seriously by healthcare professionals or those around them.

I want to emphasize that some doctors genuinely take your concerns seriously, and their numbers are increasing, albeit insufficiently. So, my message is one of hope: Do not give up. Some healthcare providers will listen and support you, even though they may currently be in the minority.

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Dr. med. Nadine Rohloff