What Is Endometriosis Awareness Month & Why Does It Still Matter?
March is Endometriosis Awareness Month — and for the 1.5 million people living with endometriosis in the UK, it’s more than a calendar moment. It’s a push for the faster diagnoses, better care, and wider understanding that this community has been waiting too long for. Whether you’ve just received a diagnosis, are years into living with it, or are still fighting to be taken seriously.
Author
Tassia O’Callaghan
Reviewed by
Kayleigh Hartigan
15 min read
Spotlight:
- Endometriosis Awareness Month takes place every March — in the UK, it’s led by Endometriosis UK as Endometriosis Action Month, with a focus on driving real change, not just raising awareness.
- The average time to receive an endometriosis diagnosis in the UK is now 9 years and 4 months — and it’s getting worse, not better.
- Endometriosis affects 1 in 10 people with a uterus in the UK, but 54% of the general public still don’t know what it is.
- Under the Equality Act 2010, endometriosis can qualify as a disability if it substantially affects your ability to carry out day-to-day activities — meaning you may be entitled to reasonable adjustments at work.
- 83% of people with endometriosis were told by a healthcare practitioner that they were “making a fuss about nothing” before receiving their diagnosis.
When is Endometriosis Awareness Month in the UK?
Endometriosis Awareness Month takes place every March, worldwide and in the UK. In the UK, it’s led by Endometriosis UK — the country’s largest endometriosis charity — and is often referred to as Endometriosis Action Month, reflecting a deliberate shift in emphasis: awareness alone isn’t enough. What’s needed is change.
The month-long campaign traces its origins back to 1993, when Mary Lou Ballweg and seven other women founded an Endometriosis Awareness Week at a roundtable meeting in Milwaukee. As the movement grew, a week quickly proved insufficient — there was simply too much to do, too many countries to reach, too many people who needed to hear about endometriosis for the first time. The week became a month, and it has grown ever since.
The theme for 2026 is ‘Endometriosis Doesn’t Wait,’ addressing the time many women wait for a diagnosis, which currently sits at an average of 9 years and 4 months, according to research from Endometriosis UK’s The State of Endometriosis Care in the UK report. It’s a theme that cuts to the heart of something the endometriosis community knows intimately: it takes far too long to be heard for a condition that directly affects your quality of life. [1]
What is endometriosis?
Endometriosis is a condition where tissue similar to the lining of the womb grows elsewhere in the body — most commonly in the pelvis, on the ovaries, fallopian tubes, and the tissue lining the pelvic cavity. Every month, this tissue responds to the hormonal cycle just like the womb lining does. Because it has nowhere to go, it bleeds internally — causing inflammation, scar tissue, and often significant, chronic pain. [2]
There are four stages, from minimal to severe, but stage doesn’t determine how much pain you’re in or what treatment you need. Someone with stage I endometriosis can be in far more pain than someone with stage IV. Your symptoms are what matter.
What are the symptoms of endometriosis?
Endometriosis symptoms are broader than most people realise, which is a significant part of why it takes so long to diagnose. Common symptoms include:
- Pelvic pain, which may be cyclical (linked to your period) or chronic (present throughout the month)
- Painful periods that disrupt daily life — not just “bad cramps,” but pain that requires time off work, prevents normal activities, or doesn’t respond well to standard pain relief
- Pain during or after sex
- Pain when going to the toilet — particularly bowel movements or urination — especially around your period
- Heavy or irregular periods, or bleeding between periods
- Fatigue, often severe
- Bloating (sometimes called “endo belly”)
- Fertility difficulties
The overlap with conditions like IBS and adenomyosis means symptoms are frequently attributed elsewhere first. And beyond the physical, chronic pain, comorbid anxiety and depression are all documented parts of living with endometriosis — not an overreaction, and equally deserving of support.
Endometriosis & Fertility: What You Need to Know
Learn how endometriosis can affect fertility, what treatment options exist, and when to seek support on your TTC journey.
The endometriosis diagnosis crisis
Here is a number that should not be a normal part of any healthcare conversation in 2026: the average time to receive an endometriosis diagnosis in the UK is now 9 years and 4 months — up from 8 years in 2020. For people from ethnically diverse communities, the wait is even longer, at eleven years on average. [1]
83% of people seeking help for their symptoms were told by a healthcare practitioner that they were “making a fuss about nothing,” that their symptoms were normal, or received similar dismissal — an increase compared with previous surveys. Over half attended A&E due to their symptoms before diagnosis, and of those, 50% were told to simply go home.
At the start of 2026, almost 750,000,000 women are waiting for gynaecology care. Without treatment, endometriosis can progress — causing worsening symptoms and, in some cases, permanent organ damage.
98% of respondents reported endometriosis having an impact on their mental health, with 63% describing it as significant. Years of dismissal, delayed diagnosis, and living with unmanaged chronic pain take a toll that goes well beyond the physical — and that deserves to be named.
Endometriosis UK is calling on governments across the UK to commit to reducing average diagnosis time to one year or less by 2030.
What colour ribbon is for endometriosis?
The colour of endometriosis awareness is yellow.
The association between yellow and endometriosis dates to 1980, when the Endometriosis Association published its first widely circulated yellow brochure. That brochure was translated into many languages and distributed around the world — and the colour stuck. When the awareness ribbon came in 1993, it was deliberately designed to carry a message rather than remain plain: “Ask me about endometriosis.” The idea was that a blank ribbon wouldn’t start a conversation, but one that asked a question might.
Each year, schools, workplaces, and communities participate in ‘Go Yellow’ events — wearing yellow, fundraising, and spreading awareness throughout March.
What flower represents endometriosis?
The sunflower is the flower of endometriosis — and the choice is more layered than it might first appear.
The most visible reason is the colour. Sunflowers are yellow, and yellow is the colour of endometriosis awareness — from the ribbon to the branding of Endometriosis Awareness Month worldwide. But sunflowers also carry a second, equally significant meaning: they are the recognised symbol of hidden disabilities.
You may have seen people wearing sunflower pin badges, sunflower lanyards, or carrying sunflower cards. These are used across the UK to signal that someone is living with a condition that isn’t immediately visible — communicating “I may need support” in spaces where it might not otherwise be obvious. Endometriosis, a condition that can be completely invisible to the outside world while being profoundly disabling on the inside, fits that symbolism precisely.
It represents light and life, yes — but it also represents visibility. And visibility matters, because awareness is what drives research funding, faster diagnosis, and better treatment. Every sunflower worn this March is a small act of making the invisible seen.
Is endometriosis considered a disability?
In the UK, endometriosis is considered a disability under the Equality Act 2010 if it has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities. Endometriosis itself is not automatically classified as a disability — that classification depends on how it affects you specifically. For an impairment to be deemed “long-term,” it must have lasted, or be likely to last, for at least 12 months. [3]
For many people with endometriosis, the symptoms and impact of surgery do meet that definition — it is a physical impairment that can have a substantial and long-term negative effect on ability to do normal daily activities. Endometriosis may also fall under the special rules related to fluctuating and recurring conditions. [4]
In practical terms: if your endometriosis substantially limits your ability to work or carry out daily tasks over the long term, you may be entitled to legal protections under the Equality Act. These include the right to reasonable adjustments from your employer — such as flexible working hours, adjusted start times, hybrid working arrangements, separate recording of endo-related absences from your general sickness record, and access to medical appointments without using annual leave.
Endometriosis UK’s position is that endometriosis should not be automatically classified as a disability for all, because doing so could create the risk of employers discriminating against people with the condition by assuming they are unable to fulfil certain roles. The legal protection is better understood as: if endometriosis affects your life to the threshold defined by the Act, you have rights — and those rights don’t require you to label yourself publicly.
If you’re navigating workplace issues, a benefits claim, or want to understand your entitlements, Endometriosis UK publishes detailed guidance on employment rights.
Does endometriosis affect fertility?
Misinformation about endometriosis and fertility runs in both directions — some people are told conception will be unaffected when it may not be; others are told they can’t get pregnant when that isn’t true. Around 60–70% of those with endometriosis can conceive spontaneously. But the condition can affect fertility through reduced ovarian reserve, scarring, and disruption to implantation — and almost one in two people with moderate to severe endometriosis may need fertility treatment such as IVF. [5]
If fertility matters to you — now or in the future — raise it with your care team early. In the context of endometriosis, earlier conversations genuinely open more doors.
Endometriosis and IVF
For those with endometriosis-related fertility difficulties, IVF is one of the most well-evidenced treatment pathways. A 2025 review confirmed that while endometriosis may reduce the number of eggs collected, overall live birth rates per treatment course remain similar to those seen in people without the condition — and cumulative live birth rates after up to four rounds can reach around 40–50%. [6,7]
IVF protocols are often tailored for people with endometriosis to manage inflammation and protect ovarian function, and the question of whether to have surgery before starting treatment is one to work through carefully with a specialist.
For many people with endometriosis, IVF offers one of the most effective routes to conception — especially when inflammation, scarring, or hormonal imbalances make it difficult to conceive naturally.
How to get an endometriosis diagnosis
Given the current state of gynaecology waiting lists and diagnosis times in the UK, being proactive and specific in how you engage with healthcare is not optional — it is necessary.
- Keep a detailed symptom diary: Record when your pain occurs, where it is, how severe it is (use a 1–10 scale), how it relates to your cycle, any bowel or bladder symptoms, pain during sex, and how symptoms affect your ability to function. This information does three things: it makes your presentation to a GP more specific and credible, it helps track patterns over time, and it creates a documented record that is harder to dismiss.
- Use the language: When you see your GP, say: “I’m concerned I may have endometriosis. My symptoms include [X, Y, Z]. I’d like to discuss a referral to gynaecology.” NICE guidance is clear that people with suspected endometriosis should be referred to a gynaecology service if initial hormonal treatment is not effective or their symptoms significantly impact daily life. You are entitled to that referral. [8]
- A “normal” scan doesn’t rule out endometriosis: Endometriosis doesn’t always show up on scans, and there is no blood test that confirms it. A standard ultrasound can identify endometriomas, but it can’t confirm or exclude endometriosis. Diagnostic laparoscopy — keyhole surgery — remains the gold standard for diagnosis. If your scan came back clear but your symptoms persist, that’s not evidence that nothing is wrong. [9,10]
- If you have been dismissed, you can go back: You’re not being dramatic. You’re not exaggerating. 83% of people with endometriosis were told by a healthcare practitioner that their symptoms were “normal” before receiving their diagnosis. That’s a systemic failure, not a reflection of your pain. [1]
- Ask specifically about your fertility goals: If you know fertility matters to you — now or in the future — say so at your first appointment. It changes the management pathway you’re entitled to.
Treatment options for endometriosis
There is no cure for endometriosis, but there are treatment options. These broadly fall into three categories, and the right approach depends on your symptoms, priorities, and fertility goals. [11]
Pain relief
Pain relief for endometriosis ranges from over-the-counter options like ibuprofen and paracetamol to prescribed medication for more severe pain. NSAIDs are typically the first line of approach. For some people, pain management becomes a significant, ongoing part of their care.
Hormonal treatments
Hormonal treatments for endometriosis work by suppressing the hormonal cycle that drives endometrial tissue to build up and bleed. Options include the combined oral contraceptive pill, progestogens (including the mini-pill, the Mirena coil, an implant, or injections), and GnRH analogues (which induce a temporary, medically managed menopause). NICE guidance recommends offering hormonal treatment to people with suspected, confirmed, or recurrent endometriosis. [10]
A crucial note: all hormonal treatments are contraceptive — they prevent conception while in use. If fertility is your goal, hormonal management and trying to conceive cannot happen at the same time.
Surgery
Surgey for endometriosis — typically laparoscopic (keyhole) — involves removing or destroying endometriotic lesions. Surgery typically improves pain for most people, though symptoms recur in around 40% of cases, and approximately 25% have a second operation within 5 years of the first. For people with deep infiltrating endometriosis involving the bowel, bladder, or ureter, surgery should take place at a specialist endometriosis centre. [12]
Hormonal treatments can be used after surgery to extend its benefits. The management of endometriosis is long-term, and your needs may shift over time — particularly as your fertility goals evolve.
What to do this March for Endometriosis Awareness Month
If Endometriosis Awareness Month means something to you — as someone living with the condition, someone who suspects they might have it, or someone who loves a person who does — here are ways to be part of it.
- Wear yellow: Yellow ribbons, yellow flowers, yellow anything. Start a conversation.
- Share the facts: 54% of people in the UK still don’t know what endometriosis is, and 56% cannot name a single symptom. Sharing accurate information reaches the person who will recognise themselves in it and finally push for a diagnosis. [1]
- Support Endometriosis UK: The charity runs the UK’s endometriosis helpline, support groups across the country, and an online community forum. They also advocate at a parliamentary level for better diagnosis times, better NHS provision, and better workplace protections. Donations and fundraising events throughout March directly fund that work.
- Write to your MP: Endometriosis UK runs campaigns throughout March asking people to contact their elected representatives about gynaecology waiting times and the government’s endometriosis diagnosis target. Individual voices add up.
- Find your community: If you haven’t already connected with others who have endometriosis, Endometriosis UK’s support groups and online forum are a real resource. Knowing that other people understand — not conceptually, but genuinely — makes a difference that’s hard to put into words.
If you have endometriosis and you’re thinking about your fertility — whether you’re ready to start trying, want to preserve your options, or are already navigating treatment — you deserve to be matched with a clinic that genuinely understands your situation.
Not every fertility clinic has equal experience with endometriosis. The right team will understand the nuances of your ovarian reserve, the role endometriomas might play, the question of whether surgery before IVF is right for you, and how to tailor a protocol that gives you the best possible chance. These details matter.
At Seen Fertility, you can use our free clinic matching tool to find fertility clinics based on your individual needs, with transparent information on cost, specialisms, and patient experiences. If you’re unsure where to start, our NHS eligibility calculator can tell you whether you may qualify for funded treatment.
Ultimately, Endometriosis Awareness Month is a reminder that you are not alone in this, and that the community fighting for better care, faster diagnosis, and real answers is growing.
Sources
- Endometriosis UK. The State of Endometriosis Care in the UK: A Roadmap for Driving Down Diagnosis Times and Improving Access to Care. 2026.
- Seen Fertility. Everything You Need to Know About Endometriosis & Fertility. Updated 28 July 2025.
- UK Parliament. Chronic Illnesses: Question for Women and Equalities. Tabled 14 March 2022.
- UK Parliament. Written evidence from Endometriosis UK (HAB0098). December 2021.
- Endometriosis UK. Endometriosis, Fertility and Pregnancy. Updated January 2025.
- Paul RC, Deans R, Henry A, Ng C, Rowlands I, Mishra GD, Abbott J, Chambers GM. Cumulative live birth rates in women with endometriosis undergoing ART treatment. Hum Reprod. 2025 Dec 1;40(12):2342-2350. doi: 10.1093/humrep/deaf191. PMID: 41052783; PMCID: PMC12675415.
- Seen Fertility. Endometriosis and IVF: What You Need to Know. 24 November 2025.
- Endometriosis UK. NICE Guidance and Quality Standards on Endometriosis.
- Royal College of Obstetricians & Gynaecologists. Endometriosis. December 2023.
- National Institute for Health and Care Excellence. Endometriosis: diagnosis and management. Last updated 11 November 2024.
- NHS Northern Licolnshire and Goole, NHS Foundation Trust. Endometriosis. Last updated 26 November 2025.
- NHS Bedfordshire Hospitals, NHS Foundation Trust. Endometriosis Patient Information.
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