Endometriosis Explained: Symptoms, Causes and How It Affects the Whole Body

Understanding your body is where taking your power back begins.

If you're here, you're probably looking for answers.

Maybe you've just been diagnosed. Maybe you suspect something isn't right. Or maybe you've lived with pain for years, trying to piece it all together on your own while being told it's "just a bad period".

I know that place, because I've been there. My symptoms started at fifteen and I wasn't diagnosed until I was thirty-two. That's why I created this space: so you don't have to spend years figuring it out alone like I did.

This is my complete guide to endometriosis symptoms, how the condition starts, the inflammation behind it and why it can affect so much more than your periods.

Everything I share is based on research, learning and lived experience, and every fact links to its source at the end.

The short answer: endometriosis is a chronic inflammatory condition where tissue similar to the womb lining grows outside the womb. It affects around 1 in 10 women. The most common endometriosis symptoms are painful periods, pelvic pain, pain during or after sex, painful bowel movements, bloating, fatigue, brain fog and difficulty getting pregnant, but it can also affect the nerves, bladder, chest, mood and sleep.

Nobody yet knows exactly what causes it.

You don't need to take it all in at once. Read it in pieces, come back to it, and start right where you are. 💛

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Disclaimer: The information shared on this website is for general informational, educational and inspirational purposes only. It is not a substitute for professional medical advice and is not intended to diagnose, treat, cure or prevent any disease. Always seek the advice of a qualified healthcare provider with any questions about a medical condition, or before making changes to your diet, lifestyle, medication or supplements.

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What is endometriosis?

For years I thought endometriosis was simply a period problem. It took me a long time to understand that it's a whole-body condition, and that understanding changed the way I looked after myself.

Endometriosis is a chronic condition where tissue similar to the lining of the womb grows outside the womb. The World Health Organization estimates it affects around 10% of women of reproductive age worldwide, roughly 190 million people.

What it looks like. Doctors describe three main types, and many women have more than one:

• Superficial endometriosis: lesions on the surface of the lining of the pelvis and abdomen (the peritoneum). They can be red, black, white, clear or even almost invisible, which is one reason they're easy to miss.

• Endometriomas: cysts on the ovaries filled with old blood, often called chocolate cysts.

• Deep endometriosis: lesions that grow more than 5 mm into tissue and organs, such as the bowel, the bladder, the ligaments behind the womb or the space between the vagina and the bowel.

Where endometriosis can grow

This is the part that's so often downplayed. Endometriosis is most common in the pelvis, but it has been found almost everywhere in the body. Here's the full picture, from the most common places to the rarest.

In the pelvis (most common):

• the ovaries and fallopian tubes

• the lining of the pelvis (peritoneum)

• the uterosacral ligaments that hold the womb in place

• the pouch of Douglas, the space between the womb and the bowel

• the outer surface of the womb

• the rectovaginal septum, the tissue between the vagina and the bowel

• the cervix, vagina and vulva

The bowel. The gut is the most common place for endometriosis outside the reproductive organs, most often the rectum and sigmoid colon, but also the appendix and small bowel. It can cause painful bowel movements, bloating, constipation, diarrhoea and, rarely, bleeding from the bottom around your period or a narrowed bowel.

The urinary tract. The bladder and the ureters, the tubes that carry urine from the kidneys, affecting around 1 to 6% of women with endometriosis. Endometriosis on a ureter can be silent and slowly block the kidney, which is why it needs specialist care.

The diaphragm, lungs and chest. The diaphragm, the lining of the lungs and the lungs themselves are the most often reported sites beyond the abdomen and pelvis. They can cause shoulder-tip and chest pain, coughing up blood and a collapsed lung around your period.

The abdominal wall, belly button and groin. Endometriosis can grow at the belly button (sometimes bleeding with your period), in the groin and along the round ligament in the inguinal canal.

Surgical scars. It can grow in caesarean section, laparoscopy and episiotomy scars, usually as a lump that swells and hurts around your period, sometimes years after the operation.

Nerves. The sciatic nerve, the pudendal nerve and the sacral nerve roots, causing pain, numbness or weakness in the buttock, leg or pelvis that follows your cycle.

Rare and very rare sites. Endometriosis has been reported in the liver and pancreas, the lining around the heart, muscles, skin, the brain and nervous system, the eye and even the nose, where it can cause nosebleeds with your period. These are rare, often single case reports, but they're real, and they're why cyclical symptoms anywhere in your body deserve to be taken seriously.

Endometriosis's sister condition: adenomyosis. In adenomyosis, tissue like the womb lining grows into the muscle wall of the womb itself, causing heavy, painful periods and a bulky womb. The two often go together: in Endometriosis UK's 2026 survey, 32% of people with endometriosis had also been diagnosed with adenomyosis.

Who it affects. Endometriosis can start with the very first periods: in a review of teenagers having keyhole surgery for pelvic pain, around 64% had endometriosis. It can continue after the menopause, especially in women taking HRT. It also affects trans men and non-binary people, and in very rare cases it has been found in men, mostly those having high-dose oestrogen treatment for prostate cancer.

What it does. These lesions respond to your hormones and set off inflammation. Over time that inflammation can create scar tissue and adhesions: bands of tough tissue that can stick organs together, pull on nerves and change how organs move and work.

What it isn't. It isn't just bad periods, it isn't "normal", and it isn't something you should be told to put up with. There is no cure yet, but there is a lot you can do, and you deserve proper care while you do it. I explore the biggest misunderstandings in Endometriosis Myths and Truths.

Endometriosis symptoms: the ones most women know

You might recognise yourself in every one of these, or only one or two. Endometriosis symptoms vary hugely from woman to woman, and how much pain you feel doesn't match how much endometriosis a surgeon finds. Some women with small lesions are in agony, and some with extensive disease have few symptoms at all.

These are the symptoms the UK's NICE guideline tells doctors to look out for:

• Period pain that stops you living your life. Not a dull ache you can ignore, but pain that keeps you off school or work, curled up with a hot water bottle, or reaching for painkillers that barely touch it.

• Pelvic pain between periods. Pain in your lower belly or pelvis that doesn't go away when your period ends.

• Deep pain during or after sex.

• Painful bowel movements, especially around your period.

• Pain passing urine or blood in your urine, especially around your period.

• Difficulty getting pregnant alongside any of these. The WHO estimates that 25 to 50% of women with infertility have endometriosis.

Other common symptoms include:

• Heavy periods. Heavy bleeding can lead to low iron, which adds to tiredness.

• Bloating and nausea. The swollen, tender "endo belly" many of us know too well.

• Bowel symptoms that look like IBS. Constipation, diarrhoea, cramping and pain after eating. The nerves supplying the womb, bowel and bladder overlap, so inflammation in one area can make the others more sensitive. Many women are told they have IBS for years before anyone considers endometriosis.

• Lower back pain, which can come with your period or stay all month.

If you're reading this list and nodding, please don't wait for it to get worse. Further down, I explain how endometriosis is diagnosed and when to see your GP.

Lesser-known endometriosis symptoms

This is the part I wish someone had shown me years ago. Endometriosis doesn't always stay in the pelvis, and some of its symptoms are so unexpected that women are sent from specialist to specialist without anyone connecting the dots.

Fatigue. This one is personal, because it's something I still live with. In a study of 1,120 women, half of those with endometriosis had frequent fatigue, more than twice as many as women without it. It's a real symptom, not laziness, and it deserves to be taken seriously.

Poor sleep. A 2024 review of 16 studies found that around 7 in 10 women with endometriosis have sleep problems. Pain disturbs sleep, and poor sleep turns the volume up on pain and fatigue.

Brain fog. Losing words mid-sentence, forgetting why you walked into a room, struggling to focus on a page you've read three times. In two studies of women with endometriosis-related pelvic pain, at least 60% reported problems with memory, attention or concentration, and pain, poor sleep and fatigue are all thought to play a part. I know it well: it was one of the first things to lift when I changed the way I ate.

Brain fog can also come from treatment. GnRH medicines, which switch off the ovaries for a while, list brain fog among their common side effects, because they create a temporary menopause-like state. If yours started or got worse with a new treatment, tell your doctor, as add-back HRT can be offered to ease these side effects.

Nerve pain, tingling and leg pain. Endometriosis lesions grow their own nerve fibres, and long-lasting inflammation can make the whole pain system more sensitive, so pain spreads and lingers. In rare cases endometriosis grows on or near the sciatic nerve, causing pain, numbness or weakness down one leg that flares with your period.

Bladder symptoms. Needing to wee often or urgently, burning, or pain as your bladder fills. Endometriosis affects the urinary tract in around 1 to 6% of women with the condition, and bladder symptoms are often mistaken for repeated urine infections.

Chest and shoulder pain. Thoracic endometriosis is rare, but it's real. It can cause chest pain, pain in the shoulder or shoulder blade (often on the right), coughing up blood, and even a collapsed lung, usually from a day before to three days after your period starts. If you ever suddenly feel breathless or have sharp chest pain, call 999 or go to A&E.

Low mood and anxiety. A review of 47 studies found women with endometriosis have more symptoms of depression and anxiety than women without it, and chronic pain was the strongest link. This isn't "all in your head". Living in pain, and being dismissed again and again, takes a real toll. I write about this side of endo in Emotional Healing with Endometriosis.

Allergies and sensitivities. In a US survey of 3,680 members of an endometriosis charity, 61% reported allergies, compared with 18% of women in the general population. So many women recognise this pattern, and it fits with what we now know about the immune system in endometriosis.

Joint and muscle aches. Some of this is the pain system being on high alert, and some may be linked to the other immune conditions that are more common with endometriosis, which I cover below.

How does endometriosis start?

If you've ever asked "why me?", you're asking the same question scientists are still working on. The honest answer is that nobody knows exactly what causes endometriosis. There are several theories, and most experts now think it's a mix of them, different for different women.

Backwards periods. The oldest theory is retrograde menstruation: during your period, some blood and tissue flows backwards through the fallopian tubes into the pelvis. This happens in around 76 to 90% of women, yet only about 1 in 10 develop endometriosis. So the real question is why, in some women, those cells survive, stick and grow. It also can't explain deep endometriosis or lesions far from the pelvis.

Cells changing type. The pelvis and abdomen are lined with cells that come from the same early tissue as the womb. One theory is that some of these cells transform into womb-like tissue, triggered by hormones or inflammation.

Stem cells. Stem cells from the womb lining or bone marrow may travel around the body and develop into endometriosis wherever they settle.

Spread through blood and lymph. Cells may travel through blood or lymph vessels, which could explain endometriosis in places like the lungs.

Cells left out of place before birth. Some researchers believe a few cells are left in the wrong place while a baby girl is developing in the womb, and switch on later, often around puberty.

Your genes. Endometriosis runs in families. A Swedish study of 28,370 twins found genes explain around 47% of the risk, and close relatives of women with endometriosis are around 5 to 7 times more likely to have it. In 2026, the largest genetic study so far linked 80 regions of our DNA to endometriosis. Genes aren't destiny, though: the other half of the risk comes from everything else in your life.

What we carry from before we were born. Some of our risk is shaped before we're even born. From the 1940s to the 1970s, many pregnant women were given a synthetic oestrogen called DES, and studies later found their daughters had nearly double the risk of endometriosis. There's something quite moving here too: all the eggs a woman will ever have form while she's still a baby inside her own mother. So the egg you came from was already there while your mother was growing inside your grandmother. Researchers are now asking whether chemical exposures, and even stress and trauma, can leave marks on our genes that pass down the generations. In mice, early exposure to dioxin has been linked to reproductive problems tied to endometriosis in later generations, and one family exposed to DES has shown endometriosis across three generations. In women, though, it's still early days: a 2023 review found only preliminary evidence that a parent's trauma changes how their child's genes are switched on, and none of that research has looked at endometriosis yet.

Your environment. This is where hormone-disrupting chemicals come in. A review of human studies found women with higher levels of dioxins and PCBs (long-lasting pollutants that build up in animal fat) had around 65 to 70% higher odds of endometriosis, and in animal studies dioxin speeded up how quickly endometriosis started and grew. For BPA and phthalates, found in plastics and fragrances, the picture is more mixed: a review of 30 studies linked phthalates with around 27% higher odds, while the few small BPA studies didn't find a clear link.

We can't control our genes, and we can't avoid every chemical. But we can lower what we're exposed to every day. One simple swap I've made is storing and reheating food in glass instead of plastic: I use Pyrex Cook & Freeze* dishes, which go from freezer to oven. I share more everyday swaps in the "Lowering your chemical load" section of Lifestyle Changes for Endometriosis.

Your life experiences. This one matters to me. A 2025 Swedish study of more than 1.3 million women found that difficult childhood experiences, such as living with violence, a parent's mental illness or addiction, or a family breaking apart, were linked to a higher risk of endometriosis later in life. The more of these a girl lived through, the higher the risk, and living with violence carried the strongest link, almost double. A 2025 UK Biobank study also found that women with endometriosis had more often been through trauma, and that endometriosis shares some genetic links with PTSD. These studies show a link rather than proof that one causes the other, and nobody knows the exact reason yet. Long-term stress is one possibility: in rats, stress made endometriosis lesions grow bigger and drew in more inflammatory immune cells. If any of this is part of your story, please hear me: it is not your fault. It's one more reason caring for your nervous system belongs alongside your medical care.

Endometriosis and inflammation: the loop that keeps it going

I used to picture endometriosis as something that flared once a month and then let me go. Understanding inflammation changed that picture completely. If endometriosis is a fire, inflammation is what keeps it burning, and hormones keep feeding it.

Here's what the research shows is happening, in plain words.

The immune system doesn't clear the cells. Normally, immune cells find tissue that's in the wrong place and remove it. In women with endometriosis, the natural killer cells whose job is to destroy stray cells work less well in the pelvis. Meanwhile immune cells called macrophages stay switched on and release inflammatory messengers such as IL-1β, IL-6, IL-8 and TNF-α. The fluid in the pelvis becomes an inflamed environment that helps stray cells stick, survive and grow.

Low oxygen helps lesions build a blood supply. When tissue lands somewhere new, like the lining of the pelvis, it's cut off from its blood supply and short of oxygen. Low oxygen switches on a protein called HIF-1α, which tells cells to grow new blood vessels. Those vessels feed the lesion. In mice, blocking this pathway slowed the growth of endometriosis lesions. This low oxygen happens inside the lesions themselves, not in the rest of your body.

Lesions make their own oestrogen. Normal womb lining doesn't make oestrogen, but endometriosis tissue does, using an enzyme called aromatase. That oestrogen switches on an enzyme called COX-2, which makes prostaglandin E2, one of the body's strongest pain and inflammation messengers. Prostaglandin E2 then switches on more aromatase, which makes more oestrogen. It's a loop that feeds itself.

Progesterone's brake doesn't work properly. Progesterone normally calms the womb lining and helps break oestrogen down. Endometriosis tissue has fewer progesterone receptors, so it responds less to progesterone. Researchers call this progesterone resistance, and it's one reason some women don't get relief from progestogen treatments.

Nerves grow into the lesions. New nerve fibres grow alongside the new blood vessels, right into the lesions. Constant inflammation makes those nerves more sensitive, and over time the spinal cord and brain can turn the volume up on pain signals. That's why pain can spread, linger between periods and not match the size of the lesions.

What about the rest of the body? Many studies find higher levels of inflammatory messengers in the blood of women with endometriosis too. But the inflammation is strongest in the pelvis, and blood tests don't always show it: in a large study nested in the US Nurses' Health Study II, blood levels of CRP and IL-6 didn't predict who went on to be diagnosed with endometriosis.

This loop is why I take a whole-body approach. Hormones, inflammation, the immune system and the nervous system are all connected, so supporting one supports the others. It's also why food became such a big part of my healing, which I write about in Anti-Inflammatory Diet for Endometriosis.

How endometriosis affects the whole body

You deserve the full picture, not a softened one. Endometriosis is linked with several other conditions, and knowing about them means you can ask the right questions and look after yourself long term. A link doesn't mean these will happen to you. It means they're worth knowing about.

Other immune conditions. A 2025 Oxford study of UK Biobank data, including more than 8,000 women with endometriosis, found they had a 30 to 80% higher risk of rheumatoid arthritis, multiple sclerosis, coeliac disease, osteoarthritis and psoriasis. The WHO also lists lupus and inflammatory bowel disease. Shared genes seem to explain part of it, which supports the idea that endometriosis is as much an immune condition as a hormonal one.

Thyroid. In the US charity survey, an underactive thyroid was reported seven times more often than in the general population. A 2024 review of eight studies found the link with thyroid function unclear, though some studies found raised thyroid antibodies. If you have symptoms such as tiredness, feeling cold or weight changes, it's reasonable to ask your GP to check your thyroid.

Your heart. A study following 116,430 US nurses for 20 years found women with surgically confirmed endometriosis had a 62% higher risk of heart disease, and the risk was highest in women under 40. Around 42% of the link was explained by hysterectomy and removal of the ovaries, often at a young age. Newer research backs this up: a 2025 review of seven studies with more than 1.4 million women, presented at the European Society of Cardiology, found endometriosis linked with a 35% higher risk of heart disease, 19% higher risk of stroke and related conditions, and 21% higher risk of heart rhythm problems. Another 2025 review found a 13% higher risk of high blood pressure. This doesn't mean you'll develop heart disease, but it's a good reason to know your blood pressure and cholesterol, keep moving, and ask about heart health whenever surgery is discussed.

Ovarian cancer. This is the one that frightens people, so here are the real numbers. A review of 24 studies found endometriosis roughly doubles the risk of ovarian cancer overall, with the biggest rise in two less common types, clear cell (around 3.4 times) and endometrioid (around 2.3 times). A large 2024 US study of more than 78,000 women with endometriosis found a higher rise, around 4 times overall and more than 9 times in women with deep endometriosis or ovarian endometriomas, though that still worked out at about 10 extra cases for every 10,000 women. The lifetime risk stays low: under 2% for women with endometriosis, compared with around 1.3% for all women. Most women with endometriosis will never develop it. If you notice persistent bloating, feeling full quickly or a change in your symptoms, see your GP.

Fertility, mood and sleep. I've covered these above, and they're just as real as the pain.

All of this is why endometriosis needs to be treated as a whole-body condition, by doctors who see the whole person.

Does endometriosis get worse over time?

This is one of the questions women ask most, and the truthful answer is: it can, but it doesn't always. Endometriosis is unpredictable, and that's exactly why it shouldn't be left to chance.

What happens to the lesions. In one trial, women whose endometriosis was seen but deliberately left untreated during surgery, and who still had symptoms, were checked again with a second operation about a year later. In 29% the endometriosis had got worse, in 29% it had improved, and in 42% it was unchanged. For deep endometriosis, a 2024 review found untreated lesions grew in around 1 in 5 women, compared with around 1 in 8 women on hormone treatment, and on hormone treatment lesions shrank by about 28% on average. A 2026 US study of 1,293 women who had surgery found advanced (stage 3 to 4) endometriosis in 18% of those aged 25 or under, rising to around half of women over 35, and operations became more complex with age because of scarring and adhesions. Younger women had more pain despite less advanced disease, another reminder that pain doesn't match what a surgeon sees.

What happens to the pain. This matters just as much. The longer pain goes on, the more sensitive the nervous system can become, and pain can turn into its own long-term problem. The WHO says early diagnosis and good care may slow or halt the progression of endometriosis and reduce the risk of the pain system becoming sensitised. The NICE guideline says the same: delays can affect quality of life and lead to the disease progressing.

What can build up over time. Ovarian cysts can grow, scar tissue and adhesions can form between organs, and deep endometriosis can, in some women, narrow the bowel or press on the tubes that drain the kidneys, sometimes without obvious symptoms. That's why ongoing check-ups matter, even when you feel you're coping.

So please don't accept "wait and see" or "just hold on until the menopause" as a plan. You deserve care now.

How endometriosis is diagnosed, and when to see your GP

Seventeen years passed between my first symptoms and my diagnosis. I know how exhausting it is to keep going back, keep explaining and keep being told it's normal.

I'm not alone in that. Endometriosis UK's 2026 survey of more than 3,000 people found it now takes an average of 9 years and 4 months to be diagnosed in the UK, and 11 years for women from ethnically diverse communities. That's longer than in 2023 (8 years 10 months) and 2020 (8 years). More than 8 in 10 had been told they were making a fuss about nothing or that their symptoms were normal. Research is moving forward, but in my experience too many doctors and healthcare professionals still haven't had up-to-date training in endometriosis, and still treat it as a bad period. I hear the same story from women again and again.

And it's not just endometriosis. A 2024 study of 21,851 emergency patients found women were less likely than men to be given pain relief, even when they reported the same level of pain. Their pain was also less likely to be recorded, and they waited around 30 minutes longer. Women's pain is still taken less seriously than men's, and that has to change.

See your GP if:

• your periods are so painful they affect your daily life

• you have pelvic pain between periods

• sex is painful, during or afterwards

• you have pain opening your bowels or passing urine, or blood in your urine, around your period

• you've been trying to get pregnant without success and have any of these symptoms

What should happen next. The NICE guideline, updated in 2024, says your GP should offer you a transvaginal ultrasound scan if endometriosis is suspected, even if an examination is normal. A normal scan doesn't rule endometriosis out. If your symptoms affect your daily life or keep coming back, you should be referred to a gynaecologist, and to a specialist endometriosis centre if deep endometriosis is suspected. Under-18s should be referred to a specialist service for young people.

Surgery isn't always needed first. Laparoscopy (keyhole surgery) is no longer the only way to diagnose endometriosis. Guidelines now say it can often be diagnosed from your symptoms plus a specialist scan or MRI, so treatment can start without waiting for an operation. Laparoscopy is still used when scans are clear but symptoms carry on.

There's no blood test yet. CRP, CA-125 and other blood tests can't diagnose endometriosis, and a normal result doesn't rule it out.

A saliva test may be coming to GP surgeries. In September 2026, NICE's updated draft guidance recommended Endotest, a saliva test that looks for a pattern of tiny molecules called microRNAs, for use by GPs during a four-year period while more evidence is collected. It's for women whose examination is normal and whose scan was clear, inconclusive or not possible, and it's meant to sit alongside, not replace, your doctor's judgement or a referral. Two other tests, a gut-signal test called EndoSure and a blood test called DotEndo, weren't recommended because the evidence is still too limited. NICE's final decision is expected after its committee meets on 18 November 2026.

Go prepared. Keep a record of your pain, bleeding, bowel and bladder symptoms, sleep and mood through your cycle, and take it with you. Ask directly for a scan or a referral. If you feel dismissed, you can ask to see another GP, and Endometriosis UK has information and support to help you push for the care you deserve.

If you'd like a starting point, my free Endo Symptom Guide is there to help you make sense of your symptoms, so you can walk into that appointment feeling clear and ready.

What's new in endometriosis research

For so long, it felt as though nothing new was happening for us. That's finally starting to change, and I want you to know what's on the horizon. Some of this is still years away, so here's exactly where each one stands.

The biggest genetic study yet. In April 2026, a study of nearly 1.4 million women, more than 100,000 of them with endometriosis, found 80 regions of our DNA linked to endometriosis risk, 37 of them new. It points to many different biological pathways working together, varying from woman to woman, rather than one single cause. The researchers also flagged existing medicines that could be repurposed, including nortriptyline, which acts on both chronic pain and low mood.

A possible blood test. A University of Edinburgh study published in July 2026 found women with endometriosis had a distinct pattern of androgen hormones made by the adrenal glands, especially one called 11-ketotestosterone. The pattern picked out more than 95% of the 159 women with endometriosis. It's early research that needs testing in larger groups before it could become a test.

A non-hormonal treatment. Dichloroacetate (DCA) is an old drug that changes how cells use energy. In a small Edinburgh study of 30 women, many reported less pain and used fewer painkillers after 12 weeks. There was no placebo group, so a larger placebo-controlled trial funded by Wellbeing of Women is the next step.

An old medicine with a new use. Cabergoline is usually used to lower the hormone prolactin. In a small 2025 trial of 60 women, presented at a conference rather than published in full, it eased endometriosis pain about as well as the progestogen dienogest, and women on cabergoline kept regular periods. A larger trial of 120 women has been approved in Spain.

New drugs at an early stage. ENDO-205, a non-hormonal treatment designed to target lesions, was cleared to begin its first human safety trial in the US in 2026. Researchers in Washington State also reported in September 2026 that niclosamide, an old anti-parasite drug delivered in tiny targeted particles, reduced endometriosis and its symptoms in mice. Human trials are still to come, and the lead researcher estimates around five years before it could reach patients.

Bacteria in the womb. A 2023 Japanese study found a type of bacteria called Fusobacterium in the womb lining of 64% of women with endometriosis, compared with 7% of women without it, and antibiotics shrank lesions in mice. It's a fascinating lead, but so far there are no human treatment trials.

Care guidelines are being questioned too. An October 2026 review of endometriosis guidelines from 47 countries found around 70% weren't shaped by anyone living with endometriosis, fewer than half had input from GPs, and some countries have no guidelines at all. The researchers are working with the WHO on a single global standard.

Research is moving forward. The problem has never been a lack of science. It's how long that science takes to reach the women sitting in their GP's surgery. That's why knowing about it matters: it helps you ask the right questions.

Managing endometriosis as a whole person

There's no cure yet, and there's no single fix. What has helped me, and what the research points to, is support from several directions at once: good medical care alongside everything you can do for your body every day.

Medical care. Treatment should be based on your symptoms, your priorities and whether you want to get pregnant, not just on what a surgeon sees. Options include:

• Pain relief. Anti-inflammatory painkillers such as ibuprofen and naproxen work by blocking the enzyme that makes prostaglandins, the same pain messengers in the loop above.

• Hormone treatments. The combined pill, patch or ring, progestogens including the hormonal coil, and GnRH medicines that switch off the ovaries for a time. Since 2025, NICE has also recommended two daily GnRH tablets you take at home, Ryeqo (relugolix combination) and Yselty (linzagolix), for women who have already tried other medical or surgical treatment. Both come with add-back hormones to ease menopause-like side effects. These treatments aim to quieten the hormone side of the loop, though they can stop you getting pregnant while you use them.

• Surgery. Removing lesions, cysts and scar tissue by keyhole surgery. There's a lot to know before you agree to an operation, so I've set it out below.

• Pelvic physiotherapy and pain support. The WHO recognises that tight, overworked pelvic floor muscles can add to pelvic pain, and that physiotherapy and talking therapies can reduce pain and improve quality of life.

Surgery: what you need to know

I had keyhole surgery in 2023, and I felt so much better afterwards. If surgery is on the table for you, these are the questions worth asking.

Excision or ablation? Excision cuts lesions out; ablation burns or vaporises them on the surface. For mild endometriosis, a review of four trials found no clear difference in pain relief between the two after a year, though the trials were small. Deep endometriosis is usually cut out by specialist surgeons, because ablation can't reach tissue growing deep into organs. If I knew more back then, I would request excision surgery.

Who does your operation matters. Deep endometriosis on the bowel, bladder or ureters should be treated in a specialist endometriosis centre, with a gynaecologist, colorectal surgeon and urologist working together. In the UK, the British Society for Gynaecological Endoscopy (BSGE) accredits these centres, and you can ask your GP to refer you to one. Before surgery, NICE recommends considering a specialist ultrasound or MRI to map deep endometriosis, so the right team is in the room.

Ovarian cysts and your egg reserve. Removing endometriomas can ease pain, but it can also lower your egg reserve: a review of 36 studies found AMH, the hormone that reflects egg reserve, fell after cyst surgery and hadn't recovered six months or more later. If you might want children, ask about this before surgery, and whether egg freezing or a fertility referral makes sense first.

It can come back. Recurrence is estimated at around 21.5% within 2 years of surgery and 40 to 50% within 5 years. Hormone treatment after surgery helps: a review of 17 studies found it cut the risk of recurrence by more than half. NICE suggests considering it to prolong the benefits of surgery.

Hysterectomy isn't a cure. If you have a hysterectomy, NICE says all visible endometriosis should be removed at the same time, and you should talk through the benefits and risks of removing your ovaries too. Removing the ovaries causes an immediate menopause, and earlier surgical menopause is linked with a higher risk of heart disease. Some women still have symptoms afterwards.

Surgery doesn't fix everything. Pain that's become part of a sensitised nervous system, pelvic floor tension and fatigue often need care alongside surgery: pelvic physiotherapy, pain management and support for your nervous system.

If you want to get pregnant. In April 2026, NICE updated its fertility guideline to give endometriosis its own section, instead of grouping it with unexplained infertility. Your doctors should look at how long you've been trying, your symptoms, your age and your egg reserve. Depending on those, you may be offered time to try naturally or surgery first, and if that isn't suitable or hasn't worked after two years, IUI or IVF should be discussed.

Food. What we eat every day is one of the most powerful tools we have, and it's where things began to shift for me. I share the evidence and exactly how I eat in Anti-Inflammatory Diet for Endometriosis and Best Foods for Endometriosis.

Heat. A hot water bottle or heat pack on your lower tummy or lower back, wherever the pain is, wrapped in a towel. In studies of period pain in general, heat worked about as well as anti-inflammatory painkillers, with fewer side effects. If you're buying a hot water bottle, choose natural rubber* marked BS 1970:2012, the British safety standard. For hands-free heat, the Heat Hug wearable hot water bottle* wraps around your front or back, and WheatyBags* make a cotton and wheat heat pack that drapes wherever you need it.

A TENS machine. In a randomised trial of women with deep endometriosis whose pain carried on despite hormone treatment, using a TENS machine twice a day for 8 weeks reduced pelvic pain and pain during sex. The one I recommend is the TensCare Ova+*, made by a UK medical device company. Don't use a TENS machine if you have a pacemaker or heart rhythm condition, are pregnant, or over broken or irritated skin.

Raspberry leaf tea. When I need something gentle for period discomfort, I drink Huntly Herbs organic raspberry leaf tea. If you're pregnant or trying to conceive, check with your doctor or midwife first.

Calming the nervous system. I meditate for 20 minutes every morning, or in the evening when the morning runs away from me. I practise Qi Gong, working with qi (life energy) through movement, breath and focused awareness, about three times a week, and this year I started somatic therapy. The research hasn't caught up with these practices yet, but for me they have been some of the most powerful support of all, for my body and my mind. I share more in Emotional Healing with Endometriosis.

For every lifestyle change in one place, from movement and sleep to flare days and your rights at work, start with Lifestyle Changes for Endometriosis.

What helped me understand my body

Through my journey, I realised that managing endometriosis isn't about one single solution. It's about understanding your body well enough to support it from every side. These are the things that helped me most.

Tracking my cycle and symptoms. I keep a journal and mark my calendar. Writing down my pain, bleeding, energy, digestion and mood through the month helped me see patterns and hormonal shifts I'd never have noticed otherwise. It also meant I could walk into appointments with facts instead of a vague "it hurts a lot".

Watching my inflammation markers. My blood tests showed raised inflammation, and over time, as I changed how I ate and lived, those markers came down. I also noticed less joint pain, less pain overall and easier periods. If you want to keep an eye on yours, ask your GP which markers make sense for you. Just remember these tests can't diagnose endometriosis, and a normal result doesn't mean your pain isn't real.

Looking beyond the symptoms. Easing one symptom at a time only takes you so far. Real change came when I started asking what was driving my symptoms: inflammation, my gut, stress, sleep and what I was exposed to every day. That's the thinking behind everything I share here.

You can read my full story, from my first symptoms at fifteen to where I am now, in Life with Endometriosis: My Story.

From me to you

There were years when I couldn't imagine feeling well. When every appointment ended with "it's normal", and I started to wonder if they were right.

They weren't. And they aren't right about you either.

Endometriosis is complex, but understanding it changes everything. Once I understood what was happening inside my body, I stopped feeling like a passenger in my own life and started taking part in my own healing.

Endometriosis may be part of my life. But it no longer defines it.

You don't need to figure it all out at once. Start with awareness. Build consistency. Support your body step by step, and ask for the care you deserve until you get it.

You are not alone in this, and there is a way forward. 💛

Coming next

Next, I'm rewriting my guide to lowering your everyday exposure to hormone-disrupting chemicals: practical, affordable swaps for your kitchen, bathroom and home, without the fear.

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Keep reading

• Endometriosis Myths and Truths: What Every Woman Needs to Know

• Lifestyle Changes for Endometriosis: A Holistic Guide to Managing Symptoms

• Anti-Inflammatory Diet for Endometriosis: What the Evidence Says and How I Actually Eat

• Best Foods for Endometriosis: What to Eat and What the Research Shows

• Emotional Healing with Endometriosis: The Side Nobody Talks About

• Life with Endometriosis: My Story of Struggle and Strength

This post is for general information and education only and is not medical advice. Always talk to a qualified healthcare professional about your own symptoms and before changing your diet, lifestyle, medication or supplements.

With love, Lena

Founder of Live Beyond Endo

Stay connected, stay informed, and above all, stay empowered.

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