Endometriosis is a chronic and often debilitating condition that affects approximately 10% of women of reproductive age. It occurs when the tissue that normally lines the inside of the uterus grows outside of it, causing pain, inflammation, and scarring.
Unfortunately, it can often be difficult to get an accurate diagnosis for endometriosis, as its symptoms can be similar to other gynecological conditions. And, pain is often overlooked in women than men, making it more challenging to get a doctor who listens and takes your symptoms as something beyond the normal female cycle.
In this blog post, we’ll discuss why it can be so hard to get an endometriosis diagnosis and provide tips for how to talk to your doctor about your symptoms.
What are covering:
Why can it be hard to get an endometriosis diagnosis
Why self-advocacy matters if you have endometriosis
Preparing for your doctor visit
What to do during your doctor visit
Considerations after your doctor visit
What to do if you don’t think your doctor is taking your symptoms seriously
Why can it be hard to get clinical care if you have endometriosis
We still don’t know what causes it:While there are plenty of theories on the matter, the fact is that there is still no conclusive evidence around what causes endometriosis.
Theories include those relating to genetic factors, faulty immune responses, environmental factors and retrograde menstruation.
One of the main reasons it can be difficult to receive quality endometriosis care is that many doctors are not familiar with the condition or its symptoms.
Endometriosis is a complex and often misunderstood condition that can cause chronic pain and other debilitating symptoms.
Unfortunately, many women with endometriosis experience difficulty in getting the care they need, including diagnosis, treatment, and ongoing management of the condition.
There are several reasons why this may be the case:
Lack of awareness: Endometriosis is a relatively common condition, affecting an estimated 1 in 10 women of reproductive age. However, many healthcare providers may not be familiar with the symptoms and diagnostic criteria for endometriosis, leading to misdiagnosis or delays in diagnosis.
Stigma: Endometriosis is still stigmatized in many cultures, with some people believing that it is a "normal" part of being a woman or that it is simply "all in the head." This can make it difficult for women to speak openly about their symptoms or seek medical care.
Limited treatment options: While there are some treatments available for endometriosis, they are not always effective for everyone, and they can be expensive or have significant side effects.
This can make it challenging for women to find a treatment that works for them and that they can afford.
Endometriosis can be confused with other conditions
The symptoms of endometriosis can be similar to other gynecological conditions, such as ovarian cysts or pelvic inflammatory disease.
Researchers acknowledge that endometriosis presents complex diagnostic challenges. Because the symptoms vary so much, the condition is often misdiagnosed as bowel and digestive disorders.
One 2020 United States study recorded that 75.2% of patients reported being misdiagnosed with another physical health (95.1%), a mental health problem (49.5%), or both before they received an endometriosis diagnosis.
It can present differently in different people
And some women have chronic and recurring monthly pelvic pain and heavy bleeding, other women have problems with fertility, and other women have no symptoms at all.
This makes is harder for doctors to identify what it is without having to do extensive, and often invasive, investigation to find out if endometriosis is the culprit.
Women’s health issues aren’t taken seriously
Research on women’s health indicates that there is a long history of women being undermined when attempting to seek out medical care for pain management or diagnoses.
Anecdotally, most women who have - or suspect they have - endometriosis complain that their doctor doesn’t take their pain seriously.
It can be difficult to access clinicians that understand the disease
In the US, healthcare coverage is determined by an individual’s access to medical insurance and is characterized by the availability of a varied and high number of healthcare providers and medical specialists, providing women in the USA with increased opportunity to directly contract care from an endometriosis specialist than may be possible in other jurisdictions.
As a result, it can take years for women to receive an accurate diagnosis, during which time their symptoms can worsen and their quality of life can be severely impacted.
Why self-advocacy matters if you have endometriosis
Self-advocacy, in plain terms, means speaking up for yourself. When it comes to health care, it means speaking up about your symptoms, sharing your opinions about treatment options, and knowing every update about your condition.
Self-advocacy makes you actively involved in managing your health and being informed of every decision concerning your condition.
It means you understand and approve every medical decision concerning your health, which is crucial because it gives you control over an uncontrollable situation and can impact your physical and mental health positively.
Advocating for yourself if you’re living with endometriosis or seeking out a diagnosis can be both difficult and yet also essential.
According to EndoWhat, an advocacy organization of people living with endometriosis and healthcare providers, the disease affects an estimated 176 million women worldwide, yet it can take up to years to get an official diagnosis.
And, even after getting an official diagnosis, it can be really difficult to access clinical care that is effective and/or aligned with your own personal goals.
A woman can spend up to 8 years struggling with endometriosis pain without getting an appropriate diagnosis.
The symptoms of endometriosis are often overlooked and termed ‘normal,’ ‘psychological,’ or ‘exaggerated.’
The experience of endometriosis, though different for everyone, is so deeply inlaid with pain of all kinds.
Beyond the obvious physical pain, living with this disease so often engenders grief and loss, anger and anxiety, despair and hopelessness.
From the routine gaslighting and misinformation from medical professionals to the lived reality of endo radically altering lives, the story of endo patients is often impossible to fully capture and communicate to those on the outside.
How people in the endo community have advocated for themselves
Feeling pressured but standing up for myself
During the consult after the procedure, the gynecologist gave me two options: hysterectomy or Depo-Provera. I felt pressure to decide on the spot.
But I stood up for myself and told her I couldn’t make that decision at that moment. Then I looked for another doctor.
I discovered my current doctor, one of the most compassionate, thoughtful, and attentive doctors I've had. She listened to my concerns, wasn't dismissive of the research I'd done, and recommended excision surgery.
Here are key steps you can take to help boost your self-advocacy skills before, during and after your visit.
Preparing for your doctor visit
When it comes to talking to your doctor about endometriosis, it’s important to be able to articulate your pain and other symptoms clearly.
Doctors only have a limited time with you during an appointment, so by outlining the specifics of your pain and how that pain impacts your quality of life, they’ll be able to best counsel you on your options.
Keep a symptom diary:
Keeping a record of your symptoms can help you identify patterns and triggers that may be contributing to your pain.
Where on your body is your pain occurring?
What does it feel like? Is it sharp pain, is it throbbing pain?
When does it happen? It is around times you have your period? Does it hurt during sex?
Use descriptive language when describing your pain:
Instead of simply saying “I’m in pain,” try to describe your pain in more detail. For example, is it sharp or dull? Is it constant or intermittent? Where is the pain located?
Consider how your endometriosis has had an impact on your life:
Endometriosis can impact your quality of life in many ways, from affecting your ability to work to interfering with your relationships. Being honest with your doctor about how your symptoms are affecting you can help them in providing ideas around your options.
Bring any previous health records:
Bring previous records from your other doctors, especially if you’ve seenn other doctors about your symptoms, if you’ve had previous surgeries, or if you’ve been on other medications that have or haven’t worked for you in the past. This will help expedite any questions around what may be causing your symptoms to get worse and or what has helped you in the past.
Think through the questions you have for your doctor and write them down:
Consider what matters to you right now (e.g. pain management, fertility, etc) and do some basic online research to understand what your options might be. Write down any questions that arise as you consider these options so you can bring them up during your visit.
What to do during your doctor visit
Take notes:
It’s easy to get overwhelmed at the doctor’s office and walk out completely forgetting what they said. Take notes during your doctor’s visit that you can easily reference if you forget something, and so you have a record of what you discussed.
Ask questions:
Don’t be afraid to ask as many questions as you need to. However, it’s important to acknowledge that endometriosis is a field in which there is very little research nor training so you may want to get a second opinion in the future.
Stay firm:
If you feel like your doctor is rushing you, not listening to you, or dismissing your symptoms, don’t be afraid to speak up for yourself and make sure that you’re getting the counceling and advice that you need. Remember that you are there to get the help you need for your health.
Consider the bigger picture:
While it’s crucial to remember that there is no miracle drug, surgery, or one-size-fits all solution for endometriosis, you have a right to get counseling from your doctor on your options. Sometimes it makes it easier to advocate for yourself if you think about the impact it will have on your loved ones.
Consider bringing support:
Bring a family member, partner, or friend for additional backup if you want help advocating for yourself. If you have the financial means, another option is to hire a patient advocate, which is a professional with a medical background who will advocate for you.
Considerations after your doctor visit
Take time to digest:
Take some time to relax and think about your doctor’s visit. Going to the doctor can be emotionally and physically draining for patients with endometriosis. Think over the information your doctor told you and review your lists of questions and answers and your notes.
Consider a second opinion:
If you still have questions or feel that you didn’t receive adequate care, don’t hesitate to get a second opinion.
Review your notes:
Make sure you bring your notes and records from your previous visit to that second opinion visit. Prepare to express why you disagree with the initial assessment.
Don’t be too hard on yourself:
Self-advocacy is no easy task, and endometriosis can be a tough subject to speak about. With every visit, think about where you still need to improve and work to improve that for next time.
Don’t get bogged down in the “what if’s” but instead focus on the “what’s next.”
What to do if you don’t think your doctor is taking your symptoms seriously
If you feel like your doctor isn’t listening to you or taking your symptoms seriously, it’s important to take action. Here are a few things you can do:
Speak up:
Be clear and assertive about your symptoms and your concerns. Don’t be afraid to ask questions or push for more information.
Consider seeing a specialist:
If your doctor isn’t familiar with endometriosis, consider seeking out a specialist who is.
Look for support:
There are many online support groups and resources available for those with endometriosis.
Connecting with others who have had similar experiences can be incredibly helpful and empowering. Seeking the help of a care navigator may be just what you need.
The takeaway
Dealing with endometriosis is a lot for anyone, and we applaud every individual who has to experience intense pain that people quickly write off just because it doesn’t show physically.
Explaining an ‘invisible’ condition to your boss and the need to take sick leave with suspicious eyes staring back at you is heartbreaking.
The worst part might be talking to a health practitioner about the severity of your symptoms and getting written off as an ‘exaggerated’ complaint.
Nevertheless, we hope you get the strength to stand up for yourself and not give up until you are heard.
You’re not alone in the fight, and an army of supporters is rooting for you.
