When I first started my journey with endometriosis, I believed everything I read, both from doctors and online sources. I assumed that medical professionals had all the answers and that the treatment plans they provided were conclusive. But over time, I came to understand that endometriosis is an incredibly complex disease—one that even the best medical minds are still learning about. No single expert has all the answers, but what makes a real difference is having a doctor who listens, understands, and is open to evolving research.
I count myself lucky to have found a doctor who genuinely cares, who takes the time to explore the latest information, and who works with me to navigate this disease. But the reality is, it should not be considered “lucky” to receive this level of care—this should be the standard for everyone living with endometriosis.
In my opinion, while there are highly skilled specialists in endometriosis, some awareness groups focus heavily on promoting only a select few doctors, often dismissing others who are also capable and willing to learn. This can create the perception that if a doctor isn’t performing hundreds of endo related surgeries a month, they are not worth seeing. But if we have this attitude, we risk limiting opportunities for other medical professionals to develop the skills needed to treat this disease effectively. More skilled doctors mean shorter waiting lists and better access to timely, effective care for everyone. I know not everyone agrees with this view, but I firmly believe that if we want to see real progress in research and treatment, we must encourage more doctors to develop expertise in endometriosis—of course, ensuring they receive the right training and support. Without more skilled doctors, waiting lists will continue to grow, and access to timely, effective treatment will remain limited.
1. Endometriosis is a Whole-Body Condition
Endometriosis affects multiple systems, including the reproductive, digestive, urinary, immune, and nervous systems. The symptoms listed here are just a few—there are many more, and this is not an exhaustive list. It is more than just painful periods—it can cause chronic pain, gastrointestinal issues, fatigue, and neurological symptoms. Many people experience debilitating symptoms that impact their daily lives, yet diagnosis is still delayed, and treatment remains inconsistent worldwide. For me, endometriosis has affected multiple areas of my body. I have had a full hysterectomy (not for endometriosis), yet it continues to be found and cause serious complications. Right now, I’m trying to navigate the possibility that I have thoracic endometriosis, which just reinforces how much more there is to learn about this disease
2. It is a Disease That Often Requires a Multidisciplinary Approach
Because endometriosis extends beyond the reproductive system, managing it effectively often requires a team of specialists, including gynaecologists, colorectal surgeons, urologists, pain management experts, cardiothoracic surgeons, and physical therapists. The complexity of the disease means that a single doctor or specialty is rarely enough to provide comprehensive care.
3. Its not just the uterine lining growing elsewhere
A common misconception is that endometriosis is simply uterine lining growing outside the uterus. However, research has shown that endometriosis tissue is different—it has its own inflammatory properties and can produce estrogen independently. This is why hormonal treatments often fail to stop its progression. I no longer have a uterus, yet endometriosis continues to be found in my body, proving that this disease is not solely linked to reproductive organs. Hormone therapy can certainly help manage symptoms, and I am not against it, but it is not a cure. It is just one part of the multi-faceted approach needed to manage endometriosis effectively.
4. We can’t always blame doctors for misinformation
One of the most frustrating things for me is seeing outdated definitions of endometriosis still being shared—even by medical professionals. Just last week, a doctor friend sent me a slide from their training, and the basic definition of endometriosis was still incorrect. If doctors are being trained with inaccurate information, how can we expect them to diagnose and treat us correctly? The medical community needs to take responsibility for improving education around endometriosis, but we also have to recognise that they can only work with the information they are given. We can’t blame individual doctors for misinformation when the system itself is failing them.
5. Diagnosing Endometriosis is Difficult
Imaging techniques like ultrasounds and MRIs are commonly used to look for endometriosis, but they are not always reliable. Many people are dismissed when scans come back “normal,” even though the disease may still be present. The only definitive way to diagnose endometriosis is through surgery and histopathological analysis. Medical professionals must be trained to recognise the diverse ways endometriosis presents in order to reduce diagnostic delays.
6. The Type or Amount of Endometriosis Doesn’t Always Correspond With Pain Levels
The type or amount of endometriosis a person has does not always correspond with their level of pain. We cannot assume that if someone has a small amount of superficial endometriosis, they cannot be in significant pain. Personally, I have had both deep infiltrating endometriosis and what now appears to be superficial endometriosis on my diaphragm, and I can say without hesitation that this superficial pain is more debilitating to me than any other pain I have experienced.
7. It Impacts Mental Health
Living with endometriosis is not just a physical challenge—it takes a significant toll on mental health. Many patients are dismissed or misdiagnosed for years, being told their symptoms are exaggerated or psychological. This medical gaslighting leads to anxiety, depression, and feelings of isolation. Personally, I often feel like I have to justify my pain. I go out of my way to do tough things so that people know if I say I am in pain, then I must really be in pain. Sometimes, I find myself doing stupid things to prove to myself that I am mentally and physically strong. There are days when I even question myself—wondering if I am somehow making it up—but deep down, I know my body, and I know what I feel is real. I count myself extremely lucky to have a supportive husband, family, and friends, but I know that many others don’t. And often, that lack of support comes simply because this disease is invisible and misunderstood. That should not be the case.
8. Symptoms Can Fluctuate and Vary Day by Day
Endometriosis symptoms can fluctuate, making it an unpredictable and often invisible illness. Some days, I can go out and train like an elite athlete, pushing my body to the limits. Other days, I struggle just to get out of bed. This inconsistency makes it difficult for others to understand what it truly means to live with this disease. Endometriosis can interfere with careers, relationships, and even simple daily activities. This variability underscores the need for greater awareness, empathy, and workplace accommodations.
9. Diagnosis Is Often Just The Beginning
While getting an official diagnosis is a significant milestone, it is just the beginning of the journey. Many people are left without clear treatment options even after diagnosis, highlighting the need for better care pathways. Treatment should not only focus on managing symptoms but also on improving overall quality of life, addressing physical, emotional, and financial burdens.
10. Advocacy is Needed but It Must be Factual
Advocacy is crucial—better awareness, improved medical education, and inclusive discussions are necessary to ensure that all people affected by endometriosis receive the care they deserve. However, awareness must be accurate. Misinformation about endometriosis leads to misconceptions, which in turn contribute to its continued misunderstanding.
My Wishlist for Future Generations!
- Improved medical education – Ensure that doctors and healthcare professionals receive accurate, up-to-date training on endometriosis.
- Better diagnostic tools – Develop more reliable, non-invasive ways to diagnose endometriosis earlier and more accurately.
- Increased research funding – Invest in studying the causes, treatment options, and long-term impacts of the disease.
- More multidisciplinary treatment centres – Establish healthcare facilities where patients can see all necessary specialists in one place.
- Greater access to excision surgery – Ensure that excision surgery, the gold standard for treatment, is more widely available and covered by insurance.
- Recognition of endometriosis as a systemic disease – Move beyond the outdated view that it is just a gynecological issue.
- Increased public awareness – Educate society on the realities of endometriosis so that those suffering feel seen and supported.
- Better workplace support – Encourage employers to recognise and accommodate the fluctuating nature of the disease.
MOVING FORWARD
Raising awareness about endometriosis is more than just sharing personal stories—it is about creating change. We need to push for better research, improved medical training, and more effective treatment options. If we work together—patients, doctors, and advocates—we can improve the future of endometriosis care and ensure that those affected receive the support they need.
To everyone living with endometriosis: I see you. Your pain is real, and you deserve better care. Let’s keep fighting for a future where endometriosis is no longer ignored.
