WHAT PEOPLE ARE SAYING ABOUT… Endometriosis & Infertility

For National Infertility Awareness Week (NIAW) 2026, we listen to what the community has been saying for decades — and hold it up against what the data now confirms.

This week, orange. This is the week of the year when endometriosis and infertility finally share the same spotlight. It is the week when RESOLVE asks the country to wear orange, when landmarks across cities light up, and when the community that has spent every other month of the year being told they are exaggerating, imagining, or unlucky, finally gets to say the word out loud: infertility.

This year the theme is #MoreThan. More than one in six. More than a stereotype. More than a single narrative of who experiences infertility or what a family is supposed to look like.

It is a theme that lands particularly hard in the endometriosis community, because for our patients, infertility is rarely the only battle. It is the one that arrives on top of a decade of being dismissed, a surgery or three, chronic pain, a body that has been trying to warn them, and a medical system that often did not listen.

So for this entry in our What People Are Saying About… series, we wanted to do something specific: sit with what the endometriosis-and-infertility community has been saying to each other online for years, and hold it side-by-side with what the data has finally caught up to. No grand conclusions. No false optimism. Just the two conversations, honestly, in one room.

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The Numbers Everyone Should Know

Before the voices, the scale. Because every story below is one of millions.

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• 1 in 10: Roughly one in ten reproductive-age women worldwide — about 190 million people — lives with endometriosis, according to the World Health Organization.

• 30-50%: Among them, between 30 and 50 percent will experience some form of infertility.

• 25-50%: Looked at from the other direction, the ASRM and multiple systematic reviews put the prevalence of endometriosis among women presenting with infertility at 25 to 50 percent. One recent systematic review of diagnostic laparoscopies in unexplained-infertility populations put the figure at 44 percent.

• 8 Years, 10 Months: The diagnostic delay is the statistic that hurts. Current international research places the average time from first symptom to confirmed diagnosis at roughly eight years and ten months. That is nearly the length of elementary and middle school. It is the entire window between turning seventeen and qualifying for a so-called geriatric pregnancy.

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Eight Things People Keep Telling Each Other

Going back through thousands of posts, comments, and stories across Reddit, private Facebook groups, Instagram, and TikTok, certain themes surface again and again. These are composite voices distilled from many:

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1. “Just get pregnant.” This is the advice that has, without exaggeration, cost the endometriosis community years. A 2023 community-based survey published in BMC Women’s Health found that the overwhelming majority of nearly 1,900 patients had been told by a healthcare professional to get pregnant to treat or manage their endometriosis. The advice is outdated, lacks a meaningful evidence base, and is a logical contradiction to give someone whose disease is actively interfering with conception.

2. The silent endo realization A meaningful portion of the endometriosis population has no pain whatsoever. No agonizing cramps, no bloating, no dyspareunia. They find out they have endometriosis because their infertility workup led there. This is often called silent endometriosis. For these patients, infertility isn’t a complication of the disease; it is the disease’s only visible symptom.

3. The decade of being dismissed A teenager tells a doctor her periods are unusual and is told they are normal. She tells another in her twenties and is told she has a low pain tolerance. She tells a third when she starts trying to conceive and is told to keep trying. By the time a surgeon finally finds endometriosis, she has been pregnancy-chasing for years, and the disease has been quietly doing its work for a decade.

4. The “geriatric” gut-punch The medical term for pregnancy after 35 — advanced maternal age, or “geriatric pregnancy” — is almost universally hated in endo communities. The diagnostic system has taken a decade of their fertile years. When they finally get to the fertility conversation, the system that caused the delay frames their age as the problem. Community members describe this as being blamed for a clock that was stopped for them.

5. The IVF that didn’t work (and why) A subset describes multiple rounds of IVF, genetically normal embryos, and no pregnancy. Eventually, a deeper workup reveals deep-infiltrating endometriosis. The inflammatory environment created by these lesions can impair implantation even when embryos are perfect.

6. The excision turning point Patient after patient describes trying to conceive for years, undergoing meticulous excision surgery with a specialist, and then conceiving within months. A 2022 systematic review pooled 23 studies and looked specifically at 635 women who had been infertile before surgery for deep endometriosis. Of those, 53 percent achieved pregnancy afterwards.

7. The losses no one prepares you for Endometriosis affects not just whether a pregnancy happens, but whether it stays. The inflammatory environment, progesterone resistance, and altered endometrial receptivity all contribute to higher rates of early pregnancy loss.

8. The complicated joy The guilt of success. Patients who finally conceive describe the strange grief of being the one whose update is good news, making baby showers and social media posts a moral dilemma.

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The Timeline No One Should Have

If you look at where the patient voices agree and where the data agrees, the overlap is not subtle. The system is too slow. And the longer it takes, the more expensive — financially, medically, and emotionally — the path to parenthood becomes.

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The fix is not mysterious. It is earlier suspicion, earlier imaging, and faster referral to clinicians who actually understand endometriosis. It is recognizing that when someone presents with unexplained infertility, failed IVF, or recurrent pregnancy loss, endometriosis belongs at the top of the differential — not the bottom.

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The Silent Endometriosis Conversation

If you are going through infertility and no one has evaluated you for endometriosis — especially if your imaging looks normal — that is the conversation to have this week.

Silent endometriosis is the reason that fertility workups focusing exclusively on hormonal panels, tubal imaging, and partner analysis can miss the underlying cause in a meaningful percentage of cases. Endometriotic implants, even tiny ones, secrete pro-inflammatory cytokines into the peritoneal fluid. They raise oxidative stress, lower endometrial receptivity, disrupt macrophage function, and change the environment in which an embryo is trying to land.

None of this shows up on a routine ultrasound. The patients most likely to benefit from asking the silent-endo question are those with unexplained infertility of 12 months or more, recurrent early pregnancy loss, or a history of two or more failed IVF cycles despite good embryo quality.

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What the Evidence Supports

• Expert excision surgery: Removes the inflammatory lesions that create the hostile pelvic environment. In the Bendifallah systematic review, 53 percent of previously-infertile patients achieved pregnancy post-surgery.

• IVF remains effective: Pooled cumulative pregnancy rates range around 67.7 percent for stage I–II disease and 56.7 percent for stage III–IV across 1–4 cycles.

• Combining excision with IVF: Appears to improve outcomes more than either alone in selected patients, particularly those with endometriomas, deep infiltrating disease, or previously failed cycles.

• Addressing concomitant adenomyosis: Uterine-sparing techniques that treat coexisting adenomyosis without weakening the uterine wall can meaningfully change pregnancy outcomes.

• Fertility preservation: Egg or embryo freezing before extensive pelvic surgery is a conversation that belongs on the table early.

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The Part the Clinic Doesn’t Always See

Infertility is a medical condition, but it is also a grief and an identity injury. Studies looking at the psychological burden of endometriosis-associated infertility find elevated rates of depression, anxiety, catastrophizing, and relationship strain.

Integrated, multidisciplinary clinical care — in which the endometriosis surgeon, reproductive endocrinologist, and mental-health provider are actually talking to each other — is the gold standard. Too few patients have access to it.

You are not broken. You are not “too old”. You are not without options. You are — to borrow this year’s NIAW theme — more than any single statistic the system has put on you.

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For the People Reading This for Someone Else

If you are here because someone you love is going through this, a short list of things the community has said repeatedly is helpful:

• Do not say “everything happens for a reason.” It lands like a slap.

• Do not offer the story of someone who got pregnant right after they “relaxed.” Stress does not cause endometriosis.

• Do not ask for updates more than you offer support. Instead ask, “Is there anything you want me to know right now?” or “Would a quiet dinner be welcome?”.

• Do wear orange this week, and do share their story if they’ve asked you to.

• Do advocate for access to fertility care, insurance coverage, and endometriosis-specialist training.

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What This Week Is For

NIAW exists because for most of recent medical history, the people most affected by infertility were told to keep it private. That silence cost the community decades. This week, the orange ribbon is a deliberately visible symbol of something that was never supposed to be hidden.

You are not the only person with a story that took ten years to be heard. You are not alone in having been told to just get pregnant. You are not the only patient whose only symptom is infertility.

And there are paths forward — real ones, with real numbers behind them. If you are in the middle of that search and you want to talk to a team that integrates expert excision surgery with reproductive-endocrinology care under one roof, that is the work we do every day at ESSI.

This article is part of ESSI’s “What People Are Saying About…” series, an ongoing look at the conversations endometriosis patients are having online and how those conversations compare to the emerging evidence. Published during National Infertility Awareness Week 2026 (April 19–25). Nothing in this piece is medical advice.

Sources

• World Health Organization. Endometriosis Fact Sheet (updated 2025).

• Practice Committee of the American Society for Reproductive Medicine (ASRM). Endometriosis and infertility: a committee opinion.

• Bendifallah S, et al. Deep Endometriosis and Infertility: What Is the Impact of Surgery? A systematic review of 23 studies. Journal of Clinical Medicine, 2022.

• Tanbo T, Fedorcsak P. Endometriosis-associated infertility: aspects of pathophysiological mechanisms and treatment options. Acta Obstet Gynecol Scand, 2017.

• Barnhart K, et al. Effect of endometriosis on in vitro fertilization — meta-analysis. Fertility and Sterility.

• CNY Fertility clinical review summarizing cumulative IVF pregnancy rates across 1–4 cycles by endometriosis stage.

• Kundu S, et al. Patient experiences of being advised by a healthcare professional to get pregnant to manage or treat endometriosis: a cross-sectional study. BMC Women’s Health, 2023.

• Sims OT, et al. Women with endometriosis in the United States: National Survey of Family Growth, 2011–2019. Women’s Health.

• Knyttel C, et al. Understanding Psychological Symptoms of Endometriosis from a Research Domain Criteria Perspective. Int J Environ Res Public Health, 2023.

• RESOLVE: The National Infertility Association. National Infertility Awareness Week 2026 — “More Than” theme materials.

• Seen Fertility diagnostic-delay data summarizing international research on average 8-year-10-month delay.