Understanding Endometriosis: What We Know, What We Don't, and How to Support Your Body
Endometriosis is one of those conditions that somehow manages to affect millions while remaining frustratingly misunderstood. If you're reading this, chances are you're dealing with it yourself, supporting someone who is, or simply trying to understand why it takes nearly nine years on average to get diagnosed in the UK (It took me about 15 years to get my own diagnosis). Let's break down what we know about endometriosis, what remains a mystery, and most importantly, what you can do about it.
What Is Endometriosis?
Endometriosis occurs when tissue similar to the lining of your uterus decides to set up shop elsewhere in your body. This rogue tissue most commonly attaches itself to your ovaries, fallopian tubes, the outer surface of your uterus, or other organs in your pelvic region. In rarer cases, it can even show up in places like your lungs, diaphragm, or surgical scars.
Here's where it gets particularly frustrating: this misplaced tissue behaves just like the lining of your uterus. It builds up, breaks down, and tries to shed with your menstrual cycle. But unlike your uterine lining, which exits through your vagina during your period, this tissue has nowhere to go, resulting in Inflammation, pain, scar tissue formation, and sometimes debilitating symptoms that impact every aspect of your life.
What makes endometriosis particularly complex is that it's not just a reproductive issue. It's a full-body, systemic inflammatory condition that affects your immune system, hormone balance, digestion, and nervous system. Some people experience excruciating pain, while others might have severe disease with minimal symptoms. The experience is deeply individual.
Common Symptoms
The symptoms of endometriosis vary enormously from person to person. Some people experience debilitating pain, while others may have extensive disease with minimal symptoms. Here are the most commonly reported symptoms:
Pain-related symptoms:
Severe pelvic or abdominal pain, particularly during menstruation
Pain during or after sexual intercourse
Pain with bowel movements or urination
Chronic lower back pain
Referred pain to unexpected areas like shoulder blades or collarbone
Menstrual symptoms:
Painful periods (dysmenorrhea)
Heavy menstrual bleeding
Blood clots during menstruation
Pain during ovulation
Digestive symptoms:
IBS-like symptoms (constipation, diarrhea, or alternating between both)
Severe bloating (often called "endo belly")
Nausea
Abdominal cramping
Other symptoms:
Chronic fatigue
Difficulty conceiving
Pain during pelvic examinations
Depression
The severity of symptoms doesn't always correlate with the extent of the disease. Some people with minimal endometriosis experience severe pain, while others with advanced disease may have few symptoms. If you're experiencing any combination of these symptoms, especially if they're impacting your quality of life, it's worth discussing with your GP.
Who Does Endometriosis Affect?
Endometriosis affects approximately one in ten women and people assigned female at birth during their reproductive years. In the UK alone, that translates to around 1.5 million people living with this condition. Globally, we're looking at an estimated 190 million individuals.
While endometriosis can develop at any age from the first period onwards, it's most commonly diagnosed in people in their 30s and 40s, with the average age being 35 in the UK. However, this doesn't mean it starts then. Many women suffer for years or even decades before receiving a diagnosis. You're more likely to develop endometriosis if a close family member has been diagnosed, suggesting a genetic component we're still working to understand.
It's worth noting that endometriosis doesn't discriminate by ethnicity, social status, or geography. However, research has highlighted concerning barriers to diagnosis and care for people from Black, Asian, and minority ethnic backgrounds, suggesting that healthcare inequalities compound an already challenging situation.
The Diagnosis Delay Crisis
One of the most infuriating aspects of endometriosis is the diagnostic journey. Recent data from Endometriosis UK reveals that it now takes an average of 8 years and 10 months to receive a diagnosis. Yes, you read that correctly. Nearly nine years of potentially debilitating symptoms before someone finally says, "Yes, this is endometriosis."
This represents a deterioration from pre-pandemic times, when the average was already an unacceptable 8 years. The delay means years of unnecessary suffering, potential disease progression, and in some cases, permanent organ damage.
The UK Healthcare System Crisis
The situation in the UK is particularly dire. As of January 2025, the gynaecology waiting list in England stands at over 582,000. Of those waiting for treatment, approximately 18,800 have been waiting more than a year. Gynaecology has seen the biggest percentage increase in waiting times of all NHS services, with times soaring by 60% across the UK during and following the pandemic.
What does this mean in practice? Women are experiencing repeated cancellations of surgeries, sometimes with just hours' notice. Many are left in limbo for months or years, managing chronic pain and debilitating symptoms without access to treatment. Some report being told that people "in more pain" are prioritised, creating an impossible situation where suffering is ranked and measured.
The impact extends far beyond physical symptoms. The mental health toll is significant, with many describing feelings of isolation, hopelessness, and desperation. The economic impact is substantial too, with affected individuals missing work, education, and social activities. Endometriosis UK estimates the condition costs the UK economy £8.2 billion annually in treatment costs, lost work, and healthcare expenses.
How Endometriosis Impacts Fertility
The relationship between endometriosis and fertility is one of the most concerning aspects of the condition for many people. Research indicates that between 30 and 50 percent of people with endometriosis may experience difficulty conceiving. Among people struggling with infertility, as many as 25 to 50 percent have endometriosis.
However, it's crucial to understand that endometriosis doesn't automatically mean infertility. Approximately 60 to 70 percent of women with endometriosis can conceive spontaneously, and many people with even severe endometriosis go on to have successful pregnancies. The key is understanding how endometriosis might affect your fertility and what options are available as early as possible.
Fertility and Treatment Options
If you have endometriosis and are having difficulty conceiving, various treatment options are available. For people with mild to moderate endometriosis, laparoscopic surgery to remove endometrial tissue has been shown to improve natural pregnancy rates. For more advanced disease or when natural conception hasn't occurred, assisted reproductive technologies like intrauterine insemination (IUI) or in vitro fertilisation (IVF) may be recommended.
According to NICE guidelines, people with endometriosis should be offered earlier referral to fertility specialists, particularly if they're over 36 or fertility is a priority. The management of endometriosis when fertility is a concern should involve a multidisciplinary team approach with input from fertility specialists.
Laparoscopic surgery is currently the gold standard for diagnosing endometriosis and can also be used to treat it. During the procedure, surgeons can identify, remove, or destroy endometrial lesions, cysts, and adhesions. Surgery can provide significant pain relief and may improve fertility, particularly for moderate to severe endometriosis.
However, surgery isn't a cure. Endometriosis can and often does recur after surgical treatment. The success of surgery depends significantly on the surgeon's expertise, particularly for complex cases involving deep infiltrating endometriosis or disease affecting the bowel or bladder.
In severe cases where other treatments have failed and fertility is not a consideration, hysterectomy (removal of the uterus) with or without removal of the ovaries may be discussed. It's important to understand that even hysterectomy doesn't guarantee cure, as endometrial tissue exists outside the uterus.
Because endometriosis is oestrogen-dependent, hormonal treatments aim to suppress oestrogen production or block its effects. Options include combined oral contraceptives, progestins, GnRH agonists, and aromatase inhibitors. These treatments can be effective for managing pain and slowing disease progression, but they come with their own considerations.
Hormonal birth control prevents ovulation and reduces menstrual flow, which can decrease pain for many people. Progestin-only options can thin the endometrial lining and reduce inflammation. GnRH agonists create a temporary menopause-like state, which can be highly effective for pain but may cause significant side effects.
The challenge with hormonal treatments is that they're not compatible with trying to conceive, and symptoms often return once treatment is stopped. They also don't remove existing endometrial tissue or adhesions.
Evidence-Based Nutrition and Lifestyle Support
Let's be clear from the start: diet and lifestyle changes are not a cure for endometriosis. Anyone who tells you otherwise is probably selling something. However, emerging research suggests that certain nutritional and lifestyle approaches may help manage symptoms, reduce inflammation, and support overall wellbeing alongside conventional treatment.
The key is approaching nutrition as one supportive element in a comprehensive treatment plan, not as a replacement for medical care or as something to feel guilty about if you can't maintain perfectly. Your experience with endometriosis is valid regardless of what you eat.
The Anti-Inflammatory Approach
Since endometriosis is fundamentally an inflammatory condition, research has focused on dietary patterns that reduce inflammation. Studies suggest that diets rich in anti-inflammatory foods may help reduce symptoms and potentially slow disease progression.
Foods that may support reduced inflammation include:
• Fruits and vegetables: Rich in antioxidants and polyphenols that combat oxidative stress. Aim for a rainbow of colours to maximise the variety of beneficial compounds.
• Omega-3 fatty acids: Found in fatty fish like salmon, sardines, and mackerel, as well as walnuts, flaxseeds, and chia seeds. Research shows that higher omega-3 intake is associated with reduced endometriosis risk and symptoms.
• Fibre-rich foods: Whole grains, legumes, vegetables, and fruits help support healthy estrogen metabolism and elimination. Fibre binds to excess estrogen in the digestive tract, helping remove it from the body.
• Olive oil and nuts: Sources of healthy monounsaturated fats with anti-inflammatory properties.
A Mediterranean-style diet, which emphasises these foods while limiting processed items, has been associated with reduced inflammation and may benefit people with endometriosis. The key is consistency over perfection and finding an approach that feels sustainable for you.
Foods to Consider Limiting
Research has identified certain dietary patterns that may worsen inflammation or increase endometriosis risk. While the evidence varies in strength, some foods are worth considering limiting:
• Red meat and processed meats: Studies have found associations between high red meat consumption and increased endometriosis risk, possibly due to inflammatory compounds and saturated fats. Currently we don’t know if this is all red meat or just processed red meat as there has been no comparison or research on organic, grass fed options.
• Trans fats: Found in many processed foods, trans fats promote inflammation and have been linked to increased endometriosis risk.
• Alcohol: May increase oestrogen levels and inflammation. Some studies suggest limiting or cutting out alcohol may be beneficial.
• Caffeine: Research on caffeine is mixed, but it may increase oestrogen availability during certain phases of the menstrual cycle. Consider switching to decaf options, which still provide beneficial polyphenols without the caffeine.
• Highly processed foods and refined sugars: These promote inflammation and provide little nutritional value. The Mediterranean diet approach of minimising these foods is a sensible guideline.
A word of caution: cutting out entire food groups can lead to nutritional deficiencies and isn't sustainable or necessary for most people. Work with a healthcare professional or registered nutrition profession to find an approach that meets your individual needs.
Specialised Dietary Approaches
Some people find relief with more specific dietary modifications. The evidence for these approaches varies, and they may not be necessary or helpful for everyone:
Gluten-free diet: A retrospective study found that 75 percent of women with endometriosis reported significant pain improvement after following a gluten-free diet for 12 months. However, about 30 percent didn't adhere to the diet, suggesting practical challenges. This approach may be particularly helpful if you experience gastrointestinal symptoms or have suspected visceral hypersensitivity.
Low-FODMAP diet: If endometriosis affects your bowel or you experience significant digestive symptoms alongside your endometriosis, a low-FODMAP approach (typically used for IBS management) might be worth exploring with a nutrition professional.
These restrictive approaches should be undertaken with professional support to ensure you're meeting your nutritional needs. They're also often meant to be temporary diagnostic tools rather than permanent lifestyle changes.
Lifestyle Factors Beyond Diet
Nutrition is just one piece of the puzzle. Other lifestyle factors may influence your experience with endometriosis:
• Stress management: Chronic stress exacerbates inflammation and can worsen pain perception. Finding stress management techniques that work for you (whether that's meditation, therapy, gentle movement, acupuncture or creative pursuits) is extremely valuable.
• Movement: Gentle, regular physical activity may help reduce inflammation and improve pain management. However, listen to your body and adapt activity levels to your symptoms.
• Sleep: Quality sleep supports immune function and pain management. Prioritise good sleep hygiene even when symptoms make it challenging.
• Hydration: Aim for adequate water intake to support your body's natural detoxification processes. However, if you have bladder symptoms, work with your healthcare provider to find the right balance
Evidence-Based Supplements
Several supplements have been studied for endometriosis, with varying levels of evidence. Always consult with your healthcare provider before starting new supplements, especially if you're on medication:
Omega-3 fatty acids: Fish oil supplements have shown promise in reducing pain scores in some studies. However, results are mixed, and some well-designed trials haven't found significant benefits beyond placebo but this may be due to study design rather than lack of efficacy.
N-Acetylcysteine (NAC): This antioxidant has demonstrated benefits for reducing pelvic pain and may even help reduce the size of endometriomas. NAC may also help prevent disease recurrence after surgery.
Curcumin: The active compound in turmeric has anti-inflammatory properties and has been shown in animal studies to inhibit endometrial cell growth and reduce lesion size. Human studies are limited but promising.
Probiotics: Specific strains like Lactobacillus gasseri have been studied for their anti-inflammatory effects and potential to support gut health. Since gut dysbiosis and SIBO is linked to endometriosis, supporting a healthy microbiome may be beneficial.
Vitamin D: While some studies show modest improvements in pelvic pain with supplementation, results have been mixed. However, ensuring adequate vitamin D levels is important for immune function and overall health.
It's important to note that supplement research in endometriosis often involves small sample sizes and short durations. The evidence is promising but not definitive. A personalised approach considering your individual symptoms, medical history, and testing is most appropriate to determine what may be most helpful for you.
Moving Forward: A Holistic Approach
Endometriosis is a complex, multifaceted condition that requires a comprehensive approach to management. There's no single solution, no perfect diet, no magic supplement that will make it disappear. What works varies enormously from person to person.
The most important things to remember are that your symptoms are real and valid, you deserve access to timely diagnosis and treatment, and while nutrition and lifestyle modifications may offer support, they're not a replacement for proper medical care. You're not failing if dietary changes don't cure your endometriosis, because nothing will cure it currently, but we can improve your symptoms whilst living with it.
Building a support team that includes medical professionals who take your symptoms seriously, nutritionists and physiotherapists who understand endometriosis, and a community of others who understand what you're going through can make an enormous difference. Advocacy organisations like Endometriosis UK provide valuable resources and support.
If you're struggling to access care through the NHS due to long waiting times, it's worth asking your GP about all available options. Don't hesitate to seek second opinions or ask to be referred to specialist endometriosis centres if you're not getting the care you need.
Research into endometriosis is ongoing, and our understanding continues to evolve. What we know today about nutrition and lifestyle support may change as new evidence emerges. Stay informed, work with professionals you trust, and most importantly, be kind to yourself as you navigate this challenging condition.
Ready to Take the Next Step?
If you're navigating endometriosis and feeling overwhelmed by where to start with nutrition and lifestyle support, you don't have to figure it all out alone.
I work with women with endometriosis to develop personalised, evidence-based nutrition and lifestyle strategies that fit into your life, and support you where you need it most.
Book a free discovery call to chat about your experience, ask questions, and see if we'd be a good fit to work together.
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