Endometriosis Explained

Disclaimer

This guide provides general information about endometriosis based on established medical knowledge. It is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider, such as your GP or a gynaecologist, for any personal health concerns or symptoms. Individual experiences with endometriosis vary widely, and what applies to one person may not apply to another. This information is accurate as of December 2025.

Table of Contents

• What is Endometriosis?

• Common Symptoms and How They Affect Daily Life

• Possible Causes and Risk Factors

• Getting a Diagnosis

• Treatment Options and Management

• Endometriosis and Fertility

• Help and Further Resources

• Frequently Asked Questions

• Conclusion

What is Endometriosis?

Endometriosis is a long-term condition where tissue similar to the lining inside the womb – known as the endometrium – grows in places outside the womb. This tissue behaves just like the normal womb lining: it thickens, breaks down, and bleeds in response to the hormonal changes of each menstrual cycle. The crucial difference is that, unlike the lining inside the womb which sheds as a period, this misplaced tissue has no way to exit the body. This leads to trapped blood and tissue, causing inflammation, pain, and often the formation of scar tissue called adhesions.

It's completely understandable to feel confused, overwhelmed, or even anxious when you first learn about endometriosis or start to suspect it might explain your symptoms. Many people in the UK live with unexplained pain or heavy periods for years before getting a proper diagnosis, and that waiting can feel incredibly frustrating. The positive side is that knowledge and support are improving, and there are real ways to manage the condition effectively.

Where Endometriosis Can Develop

Endometriosis most commonly appears in the pelvic area, but its exact location varies from person to person:

• Ovaries and fallopian tubes: These are among the most common sites. Growth here can lead to cysts on the ovaries or blockages in the tubes, which sometimes affects fertility over time. This is why early discussion with a specialist can be helpful if you're planning a family.

• Outer surface of the womb or pelvic lining (peritoneum): Small patches often form here, causing widespread inflammation across the pelvis. This type of growth frequently explains ongoing lower abdominal pain that flares up around periods or during ovulation.

• Bowel or bladder: In some cases, the tissue invades deeper into these nearby organs. This can bring additional symptoms like pain during bowel movements or urination, making routine activities more difficult. Specialist teams can offer targeted approaches to ease these issues.

• Rare sites outside the pelvis: Though uncommon, endometriosis can occasionally appear in distant areas such as the lungs, diaphragm, or even further afield. These cases tend to produce unusual symptoms (like coughing blood during periods) and usually need coordinated care from multiple specialists.

The Main Types of Endometriosis

Endometriosis comes in different forms, and many people have a combination of types. Recognising these helps explain why symptoms and treatment responses differ so much:

• Superficial peritoneal endometriosis: This is the most common form, involving shallow patches on the peritoneum (the thin lining of the pelvic cavity). Even small amounts can cause significant pain due to inflammation, and the severity on scans doesn't always match how bad symptoms feel. Hormonal treatments or careful pain management often bring good relief for many with this type.

• Ovarian endometriomas (chocolate cysts): These are cysts on the ovaries filled with thick, old blood that looks dark brown – hence the nickname "chocolate cysts". They can grow several centimetres across, occasionally causing sudden severe pain if they leak or twist the ovary. Surgery to remove them is sometimes recommended, but surgeons aim to protect egg reserves where possible.

• Deep infiltrating endometriosis: This more invasive type grows more than 5mm deep into tissues, commonly affecting the bowel, bladder, ureters, or the area behind the womb. It often causes intense, constant pain and can interfere with organ function. Cases like this usually benefit from referral to an accredited NHS endometriosis centre, where multidisciplinary teams provide expert care.

• Extrapelvic endometriosis: Rare but important, this occurs outside the pelvic region entirely. Symptoms depend entirely on the site – for instance, thoracic (chest) endometriosis might cause breathlessness or shoulder pain around periods. Diagnosis requires thinking beyond standard gynaecology and often involves other specialists.

A closely related condition is adenomyosis, where endometrial-like tissue grows into the muscular wall of the womb itself. It frequently occurs alongside endometriosis and shares symptoms like heavy, painful periods. The two can be managed in similar ways, and imaging or specialist review helps distinguish them.

How Common Is It, and Who Does It Affect?

In the UK, endometriosis is estimated to affect about 1 in 10 women and people assigned female at birth during their reproductive years – roughly 1.5 million people nationwide. This figure comes from Endometriosis UK and aligns with international data from bodies like the World Health Organization. It can begin as early as a girl's first period and typically persists until menopause, though some find symptoms ease naturally afterwards while others notice lingering effects.

Severity varies hugely: some experience only mild inconvenience, while others face major impacts on work, education, relationships, and mental health. Recent analyses of NHS data suggest many cases still go undiagnosed for years, which is why raising awareness matters so much.

The reassuring truth is that endometriosis is not cancer, it is not contagious, and it is not something you have caused yourself. It's a recognised medical condition driven by complex factors including genetics and hormones. Ongoing research is bringing new insights and better treatments, and the NHS provides access to specialist endometriosis centres for more complex needs. With the right combination of support – whether that's medication, lifestyle adjustments, or surgery when appropriate – most people discover practical ways to manage symptoms and maintain a good quality of life. If something here resonates with you, booking an appointment with your GP is a sensible and positive next step.

Common Symptoms and How They Affect Daily Life

Symptoms of endometriosis vary widely between individuals, and importantly, the level of pain or discomfort often doesn't directly match the amount of endometrial-like tissue present. Someone with minimal growth might experience severe symptoms, while another with more extensive endometriosis could have milder issues. Symptoms frequently worsen around menstruation, but they can occur at any time in the cycle or persist constantly.

It's completely understandable to feel frustrated, exhausted, or even isolated if these symptoms sound familiar – many people in the UK struggle with them for years before understanding what's happening. The chronic nature of endometriosis can make everyday tasks feel overwhelming, but recognising these signs is a key step towards getting support. Many find significant relief through NHS treatments, and awareness is helping more people access help sooner.

Key Physical Symptoms

Here are some of the most common symptoms reported by people with endometriosis, along with explanations of how they typically appear and why they happen:

• Severe period pain (dysmenorrhoea): This is one of the hallmark signs, often starting in adolescence and described as intense cramps in the lower abdomen that can spread to the back or thighs. Unlike typical period discomfort, it may not respond well to standard painkillers, forcing people to take time off school, work, or bed rest during periods. The pain comes from the misplaced tissue reacting to hormonal changes, causing inflammation and cramping beyond the womb.

• Chronic pelvic pain: A persistent ache or sharp pain in the pelvis or lower back that isn't limited to periods – it can flare up during ovulation, exercise, or even at rest. This ongoing discomfort can make prolonged sitting (like at a desk job), physical activity, or wearing tight clothing feel unbearable. Over time, it contributes to a sense of constant limitation in daily routines.

• Pain during or after sex (dyspareunia): Deep pain during intercourse or afterwards is common, particularly with certain positions, and can persist for hours or days. This arises from tissue growth in sensitive pelvic areas, leading to inflammation or adhesions pulling on organs. It often adds emotional layers, such as anxiety about intimacy or avoidance that strains relationships.

• Pain with bowel movements or urination (dyschezia or dysuria): These symptoms worsen around periods and might include bloating, diarrhoea, constipation, or even blood in stools or urine. When endometriosis affects the bowel or bladder, the tissue's response to hormones causes swelling and irritation in those organs. This can mimic conditions like IBS, making toilet trips painful and unpredictable.

• Heavy menstrual bleeding (menorrhagia) or irregular periods: Periods may be unusually heavy, requiring frequent changes of pads or tampons, lasting longer, or occurring unpredictably with spotting between cycles. The extra tissue contributes to heavier flow, and hormonal imbalances play a role. This can lead to practical challenges like anaemia-related tiredness or constant worry about leaks.

• Difficulty getting pregnant: Not everyone with endometriosis faces fertility issues, but it affects up to 30–50% of those experiencing infertility. Tissue and adhesions can block fallopian tubes, affect egg quality, or create an inflammatory environment hostile to implantation. This aspect can bring additional emotional stress, especially for those hoping to start a family.

Other less common symptoms include nausea, bloating, leg pain, or – rarely – issues like shoulder pain or coughing blood if tissue is in distant sites like the diaphragm or lungs.

Broader Impacts on Daily Life

Endometriosis doesn't just cause physical symptoms; it often ripples into many areas of life, affecting wellbeing in interconnected ways:

• The constant or unpredictable pain and fatigue can make routine activities challenging, leading to missed workdays, reduced productivity, or difficulty concentrating. In the UK, studies show that around half of those affected report impacts on their employment, such as needing flexible hours or time off. This isn't uncommon, and many employers are becoming more understanding with awareness growing.

• Relationships and social life can feel the strain too – whether it's cancelling plans due to flare-ups, struggling with intimacy, or finding it hard to explain invisible pain to loved ones. Over time, this might lead to feelings of isolation or guilt, but open communication and support from partners often help navigate these challenges.

• Extreme tiredness is a frequent companion, stemming from ongoing pain disrupting sleep, heavy bleeding causing low iron levels, or the body's effort to manage chronic inflammation. This deep fatigue can make even simple tasks feel exhausting, compounding low mood or anxiety.

• Mental health is significantly affected for many, with higher risks of anxiety, depression, or stress linked to living with unrelenting symptoms and diagnostic delays. The emotional toll of uncertainty, pain management, or fertility concerns is real, and it's why holistic care – including talking therapies – is increasingly recommended alongside medical treatments.

If several of these symptoms resonate, it's worth tracking them in a diary (noting timing, severity, and triggers) to share with your GP. Symptoms often overlap with other conditions like IBS, adenomyosis, or pelvic inflammatory disease, so professional assessment is essential for clarity. You're not imagining things or overreacting – these experiences are valid, and effective management options exist to help regain control and improve quality of life. Speaking up is a strong first move towards feeling better.

Possible Causes and Risk Factors

We still don't fully understand exactly what causes endometriosis, and that uncertainty can feel really frustrating for everyone affected – including those living with it and the researchers working hard to find answers. Current thinking points to it being a complex condition influenced by a combination of genetic, hormonal, immune, and possibly environmental factors, rather than one single trigger. No one theory explains every case, which is why symptoms and experiences vary so much.

It's important to remember that endometriosis is not caused by anything you've done wrong. It's not linked to lifestyle choices like diet or exercise in a direct "fault" way, nor is it an infection or something contagious. Reassuringly, ongoing research – including large genetic studies and work through organisations like Endometriosis UK – is gradually building a clearer picture, with potential for better prevention and treatments in the future.

Main Theories About How Endometriosis Develops

Several ideas have been explored over the years, and while none is proven as the sole cause, they help explain why the condition might start or progress:

• Retrograde menstruation: This is one of the oldest and most discussed theories, first proposed in the 1920s. It suggests that during a period, some menstrual blood flows backwards through the fallopian tubes into the pelvic cavity, carrying endometrial cells that then implant and grow outside the womb. This backward flow happens in many people without leading to endometriosis, so additional factors – like immune differences – must allow the cells to survive and thrive in the wrong place. It's a helpful way to understand why symptoms often tie to the menstrual cycle.

• Genetic factors: Family history plays a significant role, with studies showing that if a close relative (like your mother or sister) has endometriosis, your risk is higher – up to 5–7 times in some cases. Genetics are thought to account for about half of the susceptibility, involving multiple genes rather than one single "endometriosis gene". Recent large-scale genome studies have identified over 40 genetic areas linked to increased risk, some overlapping with genes involved in pain conditions, inflammation, or hormone regulation.

• Immune system involvement: Many researchers believe differences in how the immune system works could prevent the body from clearing misplaced endometrial cells properly. This might include reduced activity of natural killer cells or imbalances in inflammatory responses, allowing tissue to implant and grow. Emerging evidence also links endometriosis genetically to certain immune-related conditions, like osteoarthritis or some autoimmune diseases, suggesting shared pathways.

• Hormonal influences: Oestrogen plays a key role in promoting the growth of endometrial-like tissue, which is why symptoms often improve during pregnancy (when progesterone dominates) or after menopause (when oestrogen drops). Conditions that involve higher lifetime exposure to oestrogen may contribute, and this ties into why the condition mostly affects people during reproductive years.

Other theories include cells transforming from other tissue types (metaplasia), spread through blood or lymph, or even stem cells migrating abnormally – but these are less established.

Known Risk Factors

Certain characteristics are consistently associated with a higher chance of developing endometriosis, based on large population studies. These don't "cause" it directly but increase likelihood when combined with other factors:

• Early age at first period (menarche): Starting periods younger than age 12 (especially under 11) is linked to higher risk, possibly due to longer lifetime exposure to menstrual cycles and oestrogen. This is one of the more robust findings from epidemiological research.

• Shorter menstrual cycles or heavier periods: Cycles shorter than 27 days or very heavy bleeding mean more frequent hormonal changes and potentially more retrograde flow opportunities. These patterns expose the body to higher cumulative oestrogen levels over time.

• Never having been pregnant (nulliparity): Pregnancy provides a long break from cycles and shifts hormones towards progesterone, which may protect against progression. Women who have had children tend to have lower risk, though this doesn't mean avoiding pregnancy causes endometriosis.

• Family history: Having a first-degree relative with the condition significantly raises your odds. This genetic link is one of the strongest risk factors identified.

• Lower body mass index (BMI): Leaner body size is associated with higher risk in many studies, potentially related to differences in oestrogen production (fat tissue converts hormones). Conversely, higher BMI may offer some protection, though obesity brings other health concerns.

• Emerging environmental links: Evidence is growing but not conclusive for factors like exposure to certain chemicals (e.g., dioxins or phthalates) that disrupt hormones or inflammation. Some studies suggest early-life or ongoing exposure might play a role, but more research is needed.

Protective factors include multiple pregnancies, longer breastfeeding (which delays cycles), and possibly later menopause.

Recent UK data shows endometriosis affects around 1 in 10 women and those assigned female at birth during reproductive years – about 1.5 million people – though many cases remain undiagnosed. Diagnosis patterns also vary by ethnicity, socioeconomic factors, and access to care, highlighting why some groups might appear at lower risk due to underdiagnosis rather than true difference.

Getting a Diagnosis

Getting a diagnosis of endometriosis often takes longer than it should – in the UK, the average delay is around 8 to 10 years from when symptoms first appear. This prolonged wait stems from several reasons: symptoms frequently overlap with other conditions like IBS or heavy periods, there's no straightforward non-invasive test that catches every case, and awareness among healthcare professionals has historically been patchy. Recent efforts, including NICE guidelines and increased training, are helping to shorten this timeline for many.

The process usually begins at your GP surgery. Being detailed about your symptoms – including how they disrupt daily life, work, or relationships – gives your doctor the clearest picture. Don't hesitate to describe the severity honestly; phrases like "it's affecting my ability to function normally" can highlight the impact.

Your GP might carry out an initial examination, such as an abdominal or vaginal check, to feel for obvious abnormalities. They may also arrange blood tests to exclude other possibilities, like infections or thyroid issues. In some cases, they could suggest trying hormonal treatments (such as the combined pill) or stronger pain relief first; if symptoms improve significantly, this can support a presumed diagnosis without immediate further tests.

If endometriosis remains a strong possibility or initial approaches don't help, your GP should refer you to a gynaecologist. Wait times vary by area, but urgent referrals are possible for severe cases.

Common Diagnostic Tests

Several investigations help build a picture, though none is perfect on its own:

• Pelvic ultrasound (often transvaginal): This is usually the first imaging test offered. A probe inserted into the vagina provides clear views of the womb, ovaries, and surrounding areas, helping spot ovarian endometriomas (chocolate cysts) or larger growths. It's quick, non-invasive, and painless for most, though it won't detect superficial or small patches of endometriosis. Abdominal ultrasound is an alternative if internal isn't suitable.

• MRI scan: More detailed than ultrasound, an MRI is particularly useful when deep infiltrating endometriosis is suspected, especially if it might involve the bowel, bladder, or ureters. It provides high-resolution images without radiation and helps surgeons plan ahead. Not everyone needs one, but it's valuable for complex cases before major surgery.

• Laparoscopy: Still considered the gold standard for definitive diagnosis. This keyhole procedure, done under general anaesthetic, involves inserting a thin camera through small incisions in the abdomen to directly view the pelvis. Surgeons can confirm endometriosis by sight, take biopsies for lab analysis, and often treat visible lesions at the same time by excising or ablating them. Most people go home the same day or next, with recovery typically taking 1–2 weeks – though tiredness can linger longer.

Other tests occasionally used include CT scans (less common due to radiation) or specialist bowel studies if gastrointestinal symptoms dominate.

Specialist Care for Complex Cases

For suspected deep endometriosis or when standard gynaecology input isn't enough, referral to an accredited BSGE endometriosis centre is recommended. These specialist units across the UK bring together gynaecologists, colorectal surgeons, urologists, pain specialists, clinical nurse specialists, and radiologists in multidisciplinary teams. They offer advanced imaging, complex surgery when needed, and coordinated long-term management.

Accessing these centres usually requires a gynaecologist referral, though some regions have direct pathways. The BSGE website lists accredited centres, which can be useful to discuss with your doctor.

Preparing for Your Appointments

Keeping a symptom diary is one of the most practical steps you can take while waiting:

• Note pain patterns, severity (perhaps using a 0–10 scale), timing with periods or other activities, and any triggers or relievers.

• Record bleeding details, bowel or bladder changes, and impacts on work, mood, or relationships.

• Include what painkillers or remedies you've tried and how effective they were.

Resources like the pain and symptom diary from Endometriosis UK are specifically designed for this and can make discussions with clinicians more productive.

Many people feel nervous about examinations, scans, or the idea of surgery – that's entirely normal. Healthcare teams are used to this and aim to make processes as comfortable as possible, often offering explanations, chaperones, or sedation options. A confirmed diagnosis, while sometimes daunting, frequently provides clarity and access to targeted treatments that can make a real difference. If delays feel unacceptable or symptoms are severe, it's reasonable to ask your GP about priority referral or to seek a second opinion. Persistence often pays off in getting the right support sooner.

Treatment Options and Management

There is currently no cure for endometriosis, but a range of treatments can help control symptoms, reduce pain, slow the progression of the condition, and improve day-to-day life. The main goals are to ease discomfort, manage any related issues like heavy bleeding or fertility concerns, and support overall wellbeing. What works best varies from person to person, depending on the severity of symptoms, age, plans for pregnancy, and personal preferences.

Treatment usually starts with simpler approaches and escalates if needed. Your GP or gynaecologist will talk through the pros and cons of each option, including potential side effects, to find what fits your situation.

Pain Relief Options

Managing pain is often the first priority, and many people combine several methods for better results:

• Over-the-counter medicines: Simple medicines like paracetamol or ibuprofen (an anti-inflammatory) provide relief for milder symptoms. Taking them regularly during flare-ups, rather than waiting for pain to peak, can make them more effective. If these aren't enough, your doctor might prescribe stronger painkillers, such as codeine-based options or neuropathic pain medicines like amitriptyline for nerve-related discomfort.

• Non-medication approaches:

  • Heat therapy: Applying a hot water bottle or heat pad to the lower abdomen or back relaxes muscles and eases cramps.

  • Gentle movement: Activities like walking, swimming, or yoga can reduce stiffness and release natural pain-relieving chemicals.

  • Relaxation techniques: Deep breathing, mindfulness, or TENS machines (small devices that send gentle electrical pulses to block pain signals) help some people cope with chronic discomfort.

Hormonal Treatments

These aim to lower oestrogen levels or thin the endometrial-like tissue, often reducing pain and bleeding by suppressing periods. They are not suitable if you're actively trying to conceive:

• Combined oral contraceptive pill: Often taken continuously to avoid withdrawal bleeds, helping stabilise hormones and lighten or stop periods entirely.

• Progestogen-only methods: Include the mini-pill, contraceptive implant (Nexplanon), injection (Depo-Provera), or hormonal coil (Mirena/IUS).

• GnRH analogues: Injections or nasal sprays (e.g., Zoladex, Prostap) that temporarily switch off ovarian oestrogen production. Usually limited to 6–12 months; “add-back” HRT is often used to counter side effects.

• Newer oral options: Relugolix combination therapy (Ryeqo) or linzagolix with add-back HRT are available for moderate to severe symptoms when other treatments fail.

Hormonal treatments do not shrink existing deep lesions but prevent new growth and ease symptoms for many.

Surgical Options

Surgery is considered when medications do not adequately control symptoms or for specific issues like large cysts or fertility problems:

• Laparoscopy (keyhole surgery): Small incisions are used to view and remove (excise) or destroy (ablate) endometriosis patches, cysts, or adhesions. Excision is often preferred for longer-lasting relief.

• More complex surgery: For deep endometriosis affecting bowel, bladder, or ureters, advanced laparoscopic or open procedures may involve multidisciplinary teams from BSGE-accredited centres.

• Hysterectomy: Removal of the womb, sometimes with ovaries, as a last-resort option for severe, unresponsive cases. May relieve symptoms but does not guarantee complete resolution if endometriosis exists elsewhere and ends fertility permanently.

Symptoms can recur after surgery (up to half of cases within years), so hormonal treatment is sometimes used afterwards to prolong benefits.

Complementary and Lifestyle Approaches

While not replacements for medical care, these can support overall management:

• Diet adjustments: Some notice improvements by reducing red meat, caffeine, or processed foods and increasing anti-inflammatory options like oily fish, fruits, and vegetables.

• Pelvic floor physiotherapy: Addresses muscle tension contributing to pain, particularly during sex or bowel movements, through exercises, manual therapy, or biofeedback.

• Psychological support: CBT or counselling helps cope with emotional impacts of chronic pain, fatigue, or relationship issues. Pain management clinics offer multidisciplinary input for longstanding cases.

Many combine several strategies over time – trying hormones first, adding pain relief and physiotherapy, or turning to surgery if needed. Specialist referral to a BSGE-accredited endometriosis centre ensures access to advanced options for complex disease. Discussing your full history and priorities with your healthcare team guides the most suitable path.

Endometriosis and Fertility

Endometriosis is linked to fertility challenges for some people, though it doesn't affect everyone in the same way. Research shows that around 30–50% of those experiencing infertility have endometriosis, and conversely, up to half of people with endometriosis may face difficulties conceiving. The exact reasons aren't fully clear, but factors like scar tissue (adhesions) distorting pelvic anatomy, inflammation affecting egg release or quality, and changes in the pelvic environment can all play a part.

That said, many people with endometriosis conceive without any medical help. For mild to moderate cases, natural conception rates are often around 60–70% over time, and even with severe endometriosis, pregnancy is still possible. The impact depends on the type and extent of the disease – for example, ovarian endometriomas or deep infiltrating endometriosis tend to have a bigger effect.

Pregnancy can also bring changes to symptoms. The hormonal shifts – particularly higher progesterone levels – often lead to temporary improvement in pain and inflammation for many, providing a welcome break. Symptoms usually return after birth once periods resume, though some notice longer-term easing.

How Endometriosis Can Affect Conception

The ways endometriosis interferes with fertility are multifaceted, and not everyone experiences all (or any) of these issues:

• Distorted pelvic anatomy: Adhesions or scar tissue can block or damage fallopian tubes, preventing eggs from reaching the womb or sperm from meeting the egg. This mechanical issue is more common in moderate to severe cases and explains some outright blockages.

• Ovarian involvement: Endometriomas (chocolate cysts) on the ovaries can reduce egg quantity and quality, or make ovulation less predictable. Surgery to remove these cysts sometimes helps, but it carries a small risk of further impacting ovarian reserve.

• Inflammatory environment: Chronic inflammation in the pelvis can affect egg maturation, fertilisation, or embryo implantation. This subtler effect might explain reduced chances even in mild endometriosis without visible blockages.

• Endometrial receptivity: Changes in the womb lining or immune responses may make it harder for an embryo to implant successfully. Ongoing research explores how endometriosis influences hormones and the uterine environment.

Fertility tends to decline naturally with age, and this is accentuated if ovarian reserve is already compromised by endometriosis or previous surgeries.

When to Seek Help

If you're planning a family and have known or suspected endometriosis, early discussion with your GP is worthwhile.

Guidelines from NICE recommend seeking advice sooner than the standard "try for a year" if there's a known factor like endometriosis. Specifically, referral for specialist fertility assessment is suggested after 6 months of trying if you're over 36, or if there's a diagnosed cause of infertility. Tests usually cover both partners, including semen analysis, ovulation checks, and tube patency assessments.

Tracking cycles and symptoms can provide useful information for appointments. Many couples with endometriosis go on to have children, either naturally or with support.

Treatment Approaches When Fertility is a Priority

Management balances symptom control with preserving or enhancing conception chances – hormonal treatments that suppress endometriosis often act as contraceptives, so they're paused when actively trying:

• Expectant management: For mild cases with no major blockages, continuing to try naturally for a period (often 6–12 months post-diagnosis) is common. Regular monitoring helps track progress.

• Surgical intervention: Laparoscopic surgery to remove visible endometriosis, adhesions, or cysts can improve natural conception rates, particularly for mild to moderate disease. Studies show it may double chances in some groups, though benefits are less clear for severe cases. Specialist centres handle complex surgery to minimise risks to fertility.

• Assisted reproduction: Options like intrauterine insemination (IUI) or in vitro fertilisation (IVF) are considered when natural attempts aren't successful or blockages persist. IVF success rates are generally slightly lower with endometriosis but still viable; pre-treatment planning often involves fertility specialists alongside gynaecologists.

NHS funding for assisted treatments like IVF varies by region in the UK – local integrated care boards set criteria based on age, BMI, previous children, and other factors. Endometriosis itself can qualify as a reason for earlier referral, but availability differs, so check with your GP or local services.

Multidisciplinary input from BSGE-accredited endometriosis centres is recommended when fertility is a key concern, ensuring coordinated care.

Many people feel anxious, saddened, or overwhelmed when fertility issues arise alongside endometriosis – these emotions are entirely valid given the uncertainties. Support groups, counselling through fertility networks, or specialist nurses can provide space to talk things through. Options exist at every stage, and personalised advice from healthcare teams helps navigate them. Starting the conversation early often opens doors to the most suitable path forward.

Help and Further Resources

Living with endometriosis can feel isolating at times, especially when symptoms disrupt daily life or when explaining the condition to others proves difficult. Connecting with people who truly understand – whether through charities, online communities, or local groups – often makes a big difference. Many find comfort in sharing experiences, swapping practical tips, and feeling less alone.

In the UK, several dedicated organisations and NHS services provide reliable information, emotional support, and practical help. These resources are free or low-cost and tailored to those affected by endometriosis.

Key Support Organisations

Endometriosis UK : This is the leading UK charity for endometriosis, offering a wealth of support. Their free confidential helpline (0808 808 2227) is staffed by trained volunteers with personal experience of the condition, available for calls, web chat, or email queries about symptoms, treatments, or just someone to listen. They also run an online community forum on HealthUnlocked with thousands of members, plus numerous local volunteer-led support groups across the country (both in-person and virtual) where people meet to share stories and advice. Additional resources include downloadable factsheets, a symptom diary, workplace guidance, and campaigning for better care.

The Endometriosis Foundation : A UK-based charity focused on raising awareness, education, and support. They offer online community spaces, including public groups on HealthUnlocked and private Facebook groups, where members connect freely. Events and fundraising opportunities provide ways to get involved if desired.

NHS and Specialist Services

Your first port of call remains your GP, who can refer you to gynaecology services or, for more complex cases, to a BSGE-accredited endometriosis centre. These specialist centres – there are dozens across the UK, including in Manchester, London, Bristol, Leeds, and many regional hospitals – bring together multidisciplinary teams of gynaecologists, surgeons, pain specialists, nurses, and sometimes urologists or colorectal experts. They handle deep or severe endometriosis with advanced diagnostics and treatments. The British Society for Gynaecological Endoscopy (BSGE) maintains an up-to-date list of accredited centres, which is worth checking when discussing referrals.

NICE (National Institute for Health and Care Excellence) provides evidence-based guidelines on endometriosis diagnosis and management. Patient-friendly summaries and full guidance are available, covering what to expect from care pathways.

Mental Health and Emotional Support

The ongoing pain, fatigue, and life impacts of endometriosis can affect mood, leading to anxiety, low feelings, or stress for many. Accessing mental health support is important.

• Your GP can refer you to NHS talking therapies (such as CBT) or counselling services, often with shorter waits for chronic condition-related needs.

• Charities like Mind or Samaritans (116 123, free 24/7) offer general emotional support if things feel overwhelming.

• Many endometriosis support groups naturally provide a space to discuss the emotional side too.

Practical Tools and Additional Help

• Many people with endometriosis find it helpful to carry a medical ID card that outlines their condition in case of severe flare-ups or emergencies. Our range of medical cards is designed specifically with this in mind, providing clear, concise information that can be quickly understood by others.

• Workplace adjustments, such as flexible hours or access to quiet spaces, are rights under equality laws – Endometriosis UK has specific guides on discussing this with employers.

• If fertility concerns arise, organisations like Fertility Network UK provide dedicated support alongside endometriosis resources.

These options cover a range of needs, from immediate chat lines to long-term communities. Starting with whichever feels most comfortable – perhaps the helpline or an online forum – often leads to discovering more tailored help. Support is out there, and reaching out is a practical step many find transformative.