The Endometriosis Diary: How Sarah Found Relief After Years of Suffering

The 11-year wait

Sarah was 14 when her periods began arriving with what she now describes as "the kind of pain that makes you think something is genuinely wrong with you." She would miss school for two days every month. Her mother, who had heavy periods herself, told her this was normal. Her first GP told her the same. Her second GP told her to try yoga.

“I think the worst part wasn't the pain. It was the slow erosion of trust in my own body. When you tell three doctors you're vomiting from pain and they all shrug, you start to assume you're imagining it.”

Endometriosis affects roughly 10% of women and people with uteruses of reproductive age, and the average time from first symptom to diagnosis is 7 to 10 years. Sarah's 11-year wait was on the long end, but only just. The reasons for the delay are well-documented: cultural normalization of period pain, lack of non-invasive diagnostic tests (definitive diagnosis still typically requires laparoscopic surgery), and the way symptoms can present differently from person to person.

What endometriosis actually is

Endometriosis happens when tissue similar to the endometrium — the lining of the uterus — grows outside the uterus. Common locations include the ovaries, fallopian tubes, the lining of the pelvic cavity, and occasionally the bowel or bladder. This tissue responds to the hormonal cycle the same way the uterine lining does — it builds up, breaks down, and bleeds — but because it has nowhere to exit the body, it triggers inflammation, scar tissue (adhesions), and chronic pain. Crucially, the severity of pain does not correlate well with the visible amount of disease. People with minimal endometriosis can have debilitating pain, and people with extensive disease can have minimal symptoms.

The diagnosis: a moment of grief and relief

Sarah's diagnosis finally came at 25, after she pushed back firmly against a fourth doctor and asked specifically to see a gynecologist who treats chronic pelvic pain. The ultrasound was inconclusive. The laparoscopy, done six months later, found endometriosis on the right ovary and the uterosacral ligaments. Stage II — moderate.

“When the surgeon told me what they'd found, I cried for an hour. Not because I was sad — because somebody had finally said "this is real." I had spent half my life feeling crazy.”

The emotional weight of this kind of diagnosis is often underdiscussed. Many people describe a complicated mix of grief (for the years lost), relief (validation), and fear (what does this mean for fertility, for the future?). Therapy is a frequently-skipped but high-value part of endometriosis treatment for exactly this reason.

What worked: the layered approach

There is no cure for endometriosis. Treatment is about managing pain, slowing progression, and preserving fertility if relevant. Sarah's treatment plan came together over about 18 months and involved several layers — none of which would have worked alone.

Layer 1: Laparoscopic excision

Excision surgery, in which endometriosis lesions are carefully cut out (rather than ablated/burned), is currently the gold standard for symptomatic endo. Sarah's surgeon, who specialized in this technique, removed the visible lesions. She had about 4 months of significantly reduced pain afterwards before symptoms began creeping back — typical for the procedure.

Layer 2: Continuous combined hormonal therapy

Her gynecologist put her on a continuous combined oral contraceptive — skipping the placebo week, so she no longer had monthly bleeds. This is a well-established off-label approach: by suppressing the cyclic hormonal fluctuations, you reduce the stimulus that drives endometriosis flares. Sarah went from 12 painful cycles a year to roughly 4 breakthrough episodes. (Cochrane review on hormonal therapy for endometriosis.)

Layer 3: Pelvic floor physical therapy

Many people with endometriosis develop secondary pelvic floor dysfunction — the muscles around the pelvis get tight from chronic guarding against pain. A specialized pelvic floor physical therapist can teach release techniques, internal trigger point work, and stretches that significantly reduce day-to-day pain. Sarah was skeptical and then converted: she calls it "the single most under-prescribed intervention" she received.

Layer 4: Anti-inflammatory daily routine

On the dietary front, Sarah followed a Mediterranean-style anti-inflammatory eating pattern — heavy on omega-3s, low on red meat and ultra-processed foods. She doesn't claim it cured anything, but it did, on her own tracking, correlate with milder flare episodes. (We cover the relevant evidence in our anti-inflammatory foods for period pain post.)

Layer 5: Heat therapy for breakthrough pain

For the 4 breakthrough flares per year, Sarah uses two ComfortWave sessions back-to-back with about a 20-minute break. Heat doesn't make endometriosis pain disappear the way it can with primary cramps — the inflammation cascade is too complex — but it takes the edge off enough to function. She rates it as her "first reach" before reaching for stronger painkillers.

Sarah's advice to her younger self

1. Track your pain. In writing. Specific descriptions — sharp vs. dull, location, what makes it worse — are far more persuasive to a doctor than "really bad cramps."
2. You're allowed to fire a doctor. If you've told someone three times that you're in pain and they haven't taken meaningful action, find someone else. The right specialist exists.
3. Ask specifically to be seen by an endometriosis-specialist gynecologist. This is a sub-specialty. A general OB-GYN may not have the experience.
4. Bring someone with you to appointments. A second person hears things you miss when you're stressed or in pain.
5. Get pelvic floor physiotherapy early. The longer you guard, the harder the muscle pattern is to unwind.

A note on hope

It's common, in the months after an endometriosis diagnosis, to feel like the disease will define your life forever. For most people it doesn't. Endometriosis is currently incurable but it is manageable — and the management toolkit grows every year. Newer hormonal medications, better surgical techniques, more nuanced pain management protocols, and a steadily improving cultural conversation about menstrual pain are all moving in the right direction. Sarah is 28 now. She still has the disease. She also has fewer bad days per year than she had in any given month at 18.

“I'm not a survivor. I'm a person with a chronic illness that's being managed. That's a less heroic story but it's the honest one — and honestly, it's enough.”

Written by

Sarah Morgan

Patient Advocate