Living With Endometriosis: An Honest Companion

Endometriosis is one of the most common conditions in medicine and one of the slowest to be named. The women whose accounts this article draws on waited, on average, most of a decade between the first appointment and the word. This is companion reading, not medical advice, and treatment decisions belong with a clinician who knows your history.

A decade of being told it was normal

The condition involves tissue similar to the lining of the womb growing where it should not — on the ovaries, the bowel, the bladder, the pelvic wall, occasionally further afield — and responding to the menstrual cycle without any way to leave the body. It affects roughly one woman in ten of reproductive age. Despite that prevalence, the accounts describe a diagnostic delay that Endometriosis UK and others have measured at around seven to eight years, and that has barely moved in a generation.

The delay has a specific texture. Girls describe being told at fourteen that periods are supposed to hurt. Women describe being told at twenty-five that they had a low pain threshold, at thirty that it was probably IBS, at thirty-two that they were anxious. Several describe being asked whether they were sure the pain was real. The recurring theme is not that nobody investigated but that the investigations were for the wrong thing, and that a normal result each time was read as reassurance rather than as a reason to look elsewhere.

Two things have shifted the ground since many of these women were first dismissed. NICE's endometriosis guideline, updated in late 2024, is now explicit that a normal examination, ultrasound or MRI does not rule the condition out, and that the diagnosis should not be excluded on that basis. And the specialist-centre model — accredited endometriosis centres with surgeons who do little else — has become the recognised route for complex disease. Neither fixes the years already lost. Both change what the next appointment can look like.

Pain that does not match the scan

The fact that most confuses women and clinicians alike is that severity of symptoms bears little relationship to the amount of visible disease. A woman with widespread deep endometriosis may have moderate pain; a woman with a few small lesions may be unable to stand. Staging systems describe extent, not suffering, and contributors describe the disorientation of being told their disease was "minimal" while their life was not.

What the pain is like also varies more than the public picture allows. Period pain is the headline. But the accounts are equally full of pain with ovulation, pain during and after sex, pain on opening the bowels, pain on passing urine, pain that lasts all month, and fatigue that women describe as a symptom in its own right rather than a consequence of the others. Bowel and bladder symptoms send a great many women down a gastroenterology or urology route first, which is one reason the delay is so long.

What a laparoscopy does and does not settle

Definitive diagnosis has traditionally required keyhole surgery to see the disease directly, and for many forms of it still does. Imaging has improved: a skilled ultrasound or MRI can now identify deep disease and ovarian cysts, and the updated guidance supports treating on the basis of symptoms without waiting for surgical confirmation. But superficial disease is often invisible on scans, and women describe the particular bind of being offered treatment for a condition nobody had yet confirmed they had.

The accounts of laparoscopy itself divide on one question: whether disease found was excised or ablated. Excision cuts the lesion out; ablation burns its surface. Women who had ablation, particularly for deep disease, describe symptoms returning within a year or two and describe learning afterwards that the distinction mattered. This is one of the questions worth asking before surgery, not after.

Hormones, and the trade-offs nobody itemised

Hormonal treatment is usually first-line, and for many women it works well: combined pills, progestogen-only options, the hormonal coil, and for more severe disease GnRH analogues that induce a temporary menopause. Contributors describe real relief on these, sometimes for years.

They also describe trade-offs they were not warned about in any detail: mood changes, weight changes, loss of libido, breakthrough bleeding, and on the GnRH drugs the full menopausal picture of flushes, sleep loss and bone-density concerns. Several describe cycling through half a dozen options over several years before finding one they could tolerate, and describe wishing they had been told at the start that this was the normal shape of it rather than a sign of failure.

The other thing hormonal treatment does is pause the question rather than answer it. Women who wanted to conceive describe the difficulty of a treatment that works by suppressing the very system they needed to use.

Fertility, and the conversation that arrives too late

Endometriosis is associated with reduced fertility, though a large proportion of women with the condition conceive without difficulty, and the relationship is more complicated than the frightening version most women first encounter online.

What the accounts describe is timing. Women who were diagnosed late describe discovering the fertility dimension in their mid-thirties, having spent their twenties being told nothing was wrong. Women who were diagnosed young describe the opposite pressure: clinicians raising children before they had raised the subject themselves, and a sense of a clock being started for them. Contributors who navigated this best describe being given the facts early and neutrally, including the option of egg freezing, and being left to decide.

Hysterectomy is not the end of the story

A belief that runs through many accounts, and through a good deal of older medical practice, is that removing the womb cures endometriosis. It does not. The disease is by definition outside the womb, and a hysterectomy that leaves lesions behind leaves the pain behind with them. Removing the ovaries as well removes the hormonal drive, at the cost of surgical menopause, and even then residual disease can remain active.

Women who had hysterectomies describe outcomes across the full range. Those who describe the best results generally had the surgery for coexisting adenomyosis — endometrial tissue within the wall of the womb itself, a related but distinct condition — or had thorough excision at the same time. Those who describe regret generally describe having been told it would fix everything.

Living with it in the meantime

Between appointments and surgeries, the accounts are about management: heat, TENS machines, pacing, dietary experiments with mixed results, pelvic physiotherapy for the muscle guarding that years of pain produces, and the exhausting administration of a fluctuating condition in a workplace built for reliability.

The workplace comes up constantly. Women describe using annual leave for bad days, working through pain that would keep a colleague home, and not disclosing for fear of being seen as unreliable. Those who did disclose describe adjustments — flexible hours, remote days — that were available and that they had assumed were not.

And they describe the relationships: partners who understood, partners who did not, and the specific grief of a condition that makes sex painful in a culture that does not discuss that.

Where the accounts diverge

It would be dishonest to present endometriosis as a condition with a reliable path through it. Some women describe excision surgery at a specialist centre as transformative, with years of relief. Others describe multiple surgeries and diminishing returns. Some describe a hormonal option that gave them their life back; others describe nothing working well enough to be worth the side effects. A significant number describe the pain easing at menopause, and some describe it not.

What the accounts agree on is smaller and firmer: that the years of not being believed did lasting damage; that a specialist who knew the disease was worth travelling for; that excision and ablation are not the same thing; that hysterectomy is not a cure; and that finding other women with the condition was, for most of them, the single most useful thing they did.

Reading the accounts in full

Fifty women describing the whole arc — the dismissals, the diagnosis, the surgeries, the ones that worked and the ones that did not — is what Endo Warriors: Endometriosis Stories holds. For the related condition often found alongside it, Deep Within: Adenomyosis Treatment Stories. For the muscular pain that years of pelvic pain leaves behind, Floor Plan: Pelvic Floor Recovery Stories and Below the Belt: Chronic Pelvic Pain Stories. For the part almost nobody discusses, Pain to Pleasure: Sexual Pain Recovery Stories. All sit on our Women's Reproductive Health shelf. If the years of not being heard are the part you recognise, How to Be Heard by Your Doctor collects what patients say worked.

Every volume includes a section given to the accounts that have not resolved, because for many women with this condition, they have not.

Sources

• NICE guideline NG73, Endometriosis: diagnosis and management, updated November 2024, including the guidance that normal imaging does not exclude the diagnosis.
• Endometriosis UK, on prevalence and diagnostic delay in the UK, and on the accredited specialist centre network.
• Your GP, gynaecologist or endometriosis specialist centre, whose assessment overrides anything written here.

Last reviewed: September 2026.

Healing Stories Network publishes anthologies of first-person patient testimony. This article describes what women report experiencing. It is companion reading and is not medical advice, diagnosis or treatment. Read about who writes and checks our articles.