Education & Awareness
Adenomyosis,
Endometriosis
& Infertility.
Three conditions. One community. All deserving the same urgency, the same research, and the same standard of care.
Condition 1
Adenomyosis —
the invisible twin.
Adenomyosis occurs when tissue similar to the uterine lining grows into the muscular wall of the uterus itself — causing it to thicken, enlarge, and bleed internally with every cycle. Unlike endometriosis, which grows outside the uterus, adenomyosis grows within it. The result is a uterus that is constantly at war with itself.
It is frequently misdiagnosed as endometriosis, fibroids, or "just heavy periods." Many women have both conditions simultaneously — each making the other worse.
Symptoms
Heavy, prolonged menstrual bleeding · Severe cramping and pelvic pain · Enlarged, tender uterus · Bloating and pressure · Pain during intercourse · Passage of blood clots · Chronic fatigue from blood loss
Why It's Missed
Adenomyosis can only be definitively diagnosed by pathology after hysterectomy — or by skilled MRI interpretation. Ultrasound often misses it entirely. Most women are not offered MRI. Most radiologists are not trained to identify adenomyosis on imaging.
Pregnancy Risks
Adenomyosis significantly increases the risk of placenta accreta spectrum, preterm birth, uterine rupture, and cesarean hysterectomy. Surgical scarring from adenomyosis removal can create hidden weak points that are catastrophic in pregnancy — as our founder experienced firsthand.
Treatment Options
Hormonal suppression (progestins, GnRH agonists) · Uterine artery embolization (UAE) · Focused ultrasound · Conservative surgery (adenomyomectomy) · Hysterectomy — the only definitive cure, but not always appropriate or desired
What doctors don't tell you
A wedge resection or adenomyomectomy to remove adenomyosis creates scar tissue in the uterine wall. This scar tissue does not show on standard prenatal imaging — and can be the site of catastrophic placental invasion in future pregnancies. If you have had adenomyosis surgery, you must be treated as high-risk in any subsequent pregnancy and monitored with MRI, not just ultrasound. Demand this. It can save your life.
Condition 2
Infertility —
the connection no one explains.
Endometriosis is responsible for up to 50% of all female infertility cases — making it one of the leading causes of infertility in the world. Yet most women are not told this at diagnosis. They find out years later, after months or years of failed attempts to conceive, after IVF cycles that weren't set up to succeed, after time that cannot be recovered.
We believe every woman diagnosed with endometriosis deserves an immediate, honest conversation about her fertility — not a referral to an OB who doesn't specialize in endo.
50%
Of infertility cases linked to endometriosis
2–3×
Higher pregnancy complication risk with endo
40%
Of women with endo experience fertility challenges
How Endo Affects Fertility
Distorted pelvic anatomy from adhesions and scarring · Blocked or damaged fallopian tubes · Impaired egg quality from ovarian endometriomas · Hostile uterine environment for implantation · Inflammation that interferes with fertilization · Ovarian reserve reduction from repeated surgeries
What Actually Helps
Excision surgery by a specialist before IVF significantly improves outcomes · Monitoring ovarian reserve (AMH) regularly · Avoiding unnecessary ovarian surgeries that reduce reserve · Seeking care from a reproductive endocrinologist who understands endo · Considering egg freezing before further treatments
Questions to ask your doctor — demand real answers
- Has endometriosis affected my fallopian tubes, ovaries, or uterus in ways that affect my fertility?
- What is my current AMH level and antral follicle count?
- Should I consider excision surgery before pursuing IVF?
- Do I have adenomyosis in addition to endometriosis?
- Should I consider egg freezing now, before further treatment reduces my reserve?
- What are my specific risks during pregnancy given my surgical history?
- Will I need a placenta specialist or MFM involved in any future pregnancy?
How Stories of Endo Helps
You should not have to
figure this out alone.
The Endo Rose Membership portal includes tools built specifically for women navigating adenomyosis, infertility, and the complex intersection of both. Your health history, surgical record, cycle tracking, and doctor reports are all in one place — so you never have to start over with a new provider.