Debunking Endometriosis: Surprising Facts and Myths
Useful Reminder
Endometriosis is a chronic condition where tissue (endometrial tissue) similar to the lining of the uterus grows outside the uterine cavity, such as on or in your ovaries or bladder. This can cause pain AND a range of other symptoms. It is a complex condition, which is tricky to diagnose, that affects millions of women worldwide and impacts numerous aspects of health and daily life.
As Manatū Hauora (Ministry of Health NZ) states, “it is a condition that affects up to 1 in 10 women and girls in New Zealand.” Visit the Endometriosis New Zealand website for more information, including symptoms, diagnosis, treatment options, and advice on management.
For this blog post, our focus is on some interesting facts that are often overlooked regarding endometriosis. And some common myths that, despite new research, persist even among health practitioners.
The Link Between Diet and Endometriosis: What You Need to Know
Diet plays a crucial role in managing endometriosis, but the relationship is often misunderstood. While no one-size-fits-all diet can cure endometriosis, certain foods may exacerbate symptoms. Inflammatory foods like red meat, processed foods, dairy, alcohol and sugar might increase pain, while omega-3-rich foods and leafy greens could offer some relief.
Understanding how your diet affects your symptoms is a critical step in managing endometriosis.
As stated in one of CCRM’s blog posts (one of the US industry's leading pioneers in fertility science, research and advancement) by Barbara McGuirk, M.D., a Board Certified Reproductive Endocrinology and Infertility Specialist, and the Director of Reproductive Surgery at RADfertility and Program Director of the Endometriosis & Pelvic Pain Center:
“Inflammation and high levels of estrogen can make endometriosis symptoms worse; there are certain foods that can influence both factors. I recommend the Whole30 program for patients with endometriosis. The program, similar to traditional elimination diets, encourages you to cut out inflammatory foods from your diet, such as sugar, grains, legumes, dairy and alcohol for 30 days. During this 30-day period, you should eat lots of vegetables, moderate amounts of protein from meat, poultry, seafood and eggs, fruits, and healthy fats from foods like nuts, seeds, oils, avocados and olives. This nutrition program helps to reset your digestive tract and reduce inflammation. After the 30 days, you can slowly reintroduce foods back into your diet one by one to help you determine which foods might trigger your endometriosis symptoms. While changing your diet may not eliminate all symptoms, it could reduce the severity and improve your quality of life.”
Navigating the Emotional Impact of Endometriosis
Living with endometriosis is more than just a physical challenge; it's an emotional journey as well. The pain and unpredictability of the disease can lead to feelings of frustration, anxiety, and even depression. It’s essential to recognise these emotional challenges and seek support, whether through counselling, support groups, or open conversations with friends and family. Remember, your mental health is as important as your physical well-being.
As pointed out by Barbara McGuirk, M.D: “Being told your pain is “normal” and enduring years of chronic health issues can take a serious toll on your mental health. One study found that individuals with endometriosis had an increased risk of developing major depression and anxiety disorders compared to those without it. Sufferers of endometriosis are also more likely to self-harm.”
Understanding the Wide Spectrum of Endometriosis Symptoms
Endometriosis symptoms vary widely among individuals. While pelvic pain is the most common symptom, others may experience heavy periods, infertility, or even no symptoms at all. This wide symptom spectrum often leads to missed and/or delayed diagnosis and treatment. Awareness of these potential, varied symptoms is vital for timely and accurate diagnosis.
Endometriosis NZ lists the following common symptoms:
Pain with periods (dysmenorrhoea). Often the most common symptom.
Bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind (sometimes diagnosed as Irritable Bowel Syndrome)
Painful intercourse (dyspareunia)
Sub-fertility or infertility
Tiredness and low energy
Pain in other places such as the lower back
Pain at other times e.g. with ovulation or intermittently throughout the month
Premenstrual syndrome (PMS). This might make you feel moody, emotional or irritable
Abnormal menstrual bleeding
Bladder troubles like interstitial cystitis (IC)
Unfortunately, while a doctor may suspect endometriosis, the reality is “it can only be definitely diagnosed by viewing the pelvic cavity at laparoscopy (key hole surgery). This is done in hospital under general anaesthetic and is best performed by a gynaecologist with expertise in treating endometriosis.[…] Internationally, there is a diagnostic delay of 8+ years from first presentation of symptoms to a doctor with diagnosis.”
Endometriosis is yet another evidence of the women’s health gap.
Common Misconceptions Leading to Poor Diagnosis
Endometriosis is often misdiagnosed. Common misconceptions are that endometriosis is always extremely painful and that it only affects older women. Another myth is that pregnancy will cure endometriosis.
Dispelling these myths is crucial for understanding and effectively treating the disease.
As suggested by gynaecologist and endometriosis specialist Dr Michael Wynn-Williams in an RNZ article: “We know from research that's been done in Australia that many women get told 'you've got endometriosis you need to get pregnant, and you need to get pregnant straight away. That's often by family members who have experienced endometriosis and have been told the same thing, but also by health professionals and that's really difficult” (April, 2023).
In the same article, Chief Executive of Endometriosis New Zealand Tanya Cooke says: “there is still a lot of stigma around the condition in the workplace. We know that from research conducted last year in New Zealand that 75 percent of the participants were scared to tell their employer that they have endo. We also know from research in Australia that one in six people with endo have actually lost their job”.
As a result, Endometriosis NZ has been working on the Women's Health Strategy submission calling “for the development of a national endometriosis action plan, similar to that which was successfully implemented in Australia. Such a plan will provide a clear pathway to address endometriosis, through enhanced education, increased awareness, improved clinical management and care, and focused research initiatives.”
Advocating for Support and Understanding
Advocacy is key in dealing with endometriosis. Many women face challenges in having their symptoms taken seriously. It’s crucial to advocate for your health by seeking second opinions, asking questions, and pushing for comprehensive care. Additionally, raising awareness about endometriosis helps in building a supportive community and encourages more research and better treatment options.
In July 2023, the Manatū Hauora Ministry of Health released Aotearoa New Zealand’s first Women’s Health Strategy, which you can read here. We note the following:
“We heard that women with endometriosis are affected by a lack of available information around menstrual health, as well as being unfairly affected by a lack of management and treatment guidance for health practitioners, and limited availability of specialist treatments. We heard how wāhine Māori and their whānau feel that bias can result in a lack of timely diagnostic testing for conditions, including cancer when they present with symptoms. We also know that wāhine Māori and Pacific women have lower rates of cervical screening and are more likely to die from women’s cancers than other groups of women.”
Acupuncture as an Effective Treatment for Endometriosis
Acupuncture has been shown to help alleviate some of the pain and discomfort associated with endometriosis. By targeting specific energy points in the body, it can help reduce inflammation, improve circulation, and balance hormones, all of which are crucial for managing endometriosis symptoms.
Additionally, acupuncture offers a holistic approach to health, addressing both physical and emotional well-being, making it a valuable treatment option for many women struggling with this condition. Remember, while acupuncture can be a powerful tool, it's important to consult with healthcare professionals to determine the best comprehensive treatment plan for your needs.