Why You May Have Endometriosis And Not Know It

Endometriosis is a condition that many women live with for years before ever getting a clear answer. In fact, it takes an average of 7–10 years for most women to be diagnosed. This long wait, often called diagnostic delay, means many women suffer in silence while trying to manage pain that is frequently dismissed as “just part of being a woman.”

This article breaks down what endometriosis is, why it takes so long to diagnose, how it can affect your health, and answers some of the most common questions women ask about it.

What Exactly Is Endometriosis?

Endometriosis happens when tissue that looks and behaves like the lining of the womb (endometrium) grows in places it shouldn’t. It may grow on:

- The ovaries

- Fallopian tubes

- The lining of the pelvis

- The bladder or intestines

- In rare cases, even outside the pelvic region like the lungs, brain, muscles, etc.

Just like the lining of the womb, this tissue responds to monthly hormonal changes. It thickens, breaks down, and bleeds. But unlike normal menstrual blood, it has no way to leave the body. The trapped blood and tissue cause inflammation, pain, scar tissue (adhesions), and sometimes cysts on the ovaries called endometriomas.

Globally, endometriosis affects around 10% of women and girls of reproductive age; that’s nearly 190 million people. Among women with chronic pelvic pain, about 4 in 10 have endometriosis, and among those struggling with infertility, it’s about 3 in 10.

What Causes It?

The exact cause is not known, but several factors are thought to play a role:

1. Genetics—If your mother or sister has endometriosis, your chances are higher.

2. Hormones—Estrogen seems to fuel its growth.

3. Immune system issues—Some women’s bodies may not clear misplaced cells properly.

4. Retrograde menstruation—when menstrual blood flows backward into the pelvis instead of out of the body.

5. Other theories—Some scientists believe cells outside the uterus can “transform” into endometrial-like cells, or that surgery scars may provide a site for endometriosis to grow.

Common Symptoms

Endometriosis shows up differently in each woman, but the most common symptoms include:

- Severe period pain (worse than “normal cramps”)

- Heavy or irregular bleeding

- Pain during or after sex

- Pain with urination or bowel movements, especially during periods

- Chronic pelvic pain that can last beyond menstruation

- Infertility or difficulty getting pregnant

- Fatigue, bloating, nausea, or back pain

Why Does Diagnosis Take So Long?

Endometriosis is often called a “silent condition,” not because women don’t feel symptoms, but because their pain is ignored or misinterpreted. Some of the main reasons include:

- Cultural silence: In many societies, periods are taboo topics, leaving girls without the words or confidence to explain their pain.

- Normalization of pain: Many are told that painful periods are “normal” or “something to endure.”

- Medical bias: Even healthcare providers sometimes dismiss complaints as stress, IBS, or just “bad cramps.”

- Symptom overlap: One of the biggest challenges is that many of the symptoms overlap with other conditions, such as irritable bowel syndrome (IBS) or urinary tract problems. This makes it easy for both women and healthcare providers to miss the signs.

- Limited tools: Ultrasound or MRI may suggest endometriosis but can miss smaller lesions.

- Gold-standard diagnosis is surgical: The only way to confirm endometriosis is by laparoscopy, a surgical procedure that is costly, invasive, and not always accessible.

- Patient hesitation: Some women fear being dismissed or feel embarrassed about discussing symptoms, leading them to delay seeking help. This is usually a big issue, as women fail to seek care because of fear of dismissal.

All these factors explain why so many women wait nearly a decade before finally getting a diagnosis.

How Is It Treated?

There is currently no cure for endometriosis, but treatments aim to reduce pain, improve quality of life, and support fertility goals. Options include:

- Medications: Pain relievers (like NSAIDs) and hormone therapies (such as birth control pills, progestins, or GnRH agonists) to suppress endometrial growth.

- Surgery: Laparoscopy can remove or destroy endometriosis tissue, helping with both pain and fertility.

- Lifestyle changes: Exercise, a healthy diet, stress management, and adequate sleep can ease symptoms for some women.

- Supportive care: Counseling, support groups, and physical therapy may help women cope with the physical and emotional impact.

Treatment choices usually depend on your symptoms, how severe they are, and whether you want to have children.

Answering Common Questions About Endometriosis

1. Can endometriosis cause infertility?

Yes. Endometriosis is a leading cause of infertility. It can block fallopian tubes, damage ovaries, or interfere with implantation. However, not all women with endometriosis struggle to conceive. Many get pregnant naturally, and there are different treatment options to improve chances.

2. Does endometriosis turn into cancer?

Endometriosis itself is not cancer. In very rare cases, it may be linked to ovarian cancer, but the overall risk is extremely low.

3. What treatments are available?

Treatment depends on whether you want to get pregnant. Options include pain medications, hormone therapy, and surgery. The aim is to control symptoms, preserve fertility, and improve daily life.

4. Is it just about painful periods?

No. Endometriosis is not only about menstrual pain. It can cause chronic pelvic pain, bowel or bladder issues, fatigue, and infertility. It also takes a toll on mental health and relationships.

5. Can endometriosis be cured?

There is no permanent cure yet. Surgery can remove visible lesions, and medicines can control growth, but symptoms often come back over time.

6. What lifestyle changes help?

Many women find relief with:

- Regular exercise

- Anti-inflammatory diets (rich in vegetables, whole grains, and omega-3s)

- Stress management like breathing exercises and other routine exercises.

- Heat therapy (hot water bottles or heating pads)

- Support groups or therapy for emotional support

7. Is it a rare condition?

Not at all. Endometriosis affects 1 in 10 women of reproductive age worldwide, making it very common. The problem is not its rarity but the silence and misunderstanding around it.

Living With Endometriosis

Living with endometriosis is not just about managing physical symptoms. It can affect every part of life, from missing school or work because of pain to strained relationships due to fatigue or painful sex to emotional struggles from feeling dismissed.

The good news is that awareness is growing. More women are speaking up, researchers are studying better diagnostic methods, and advocacy groups are pushing for earlier recognition and treatment. 

Femtech is also playing a key role, from period-tracking apps that help women record patterns of pain and bleeding to digital platforms that connect patients with specialists, giving doctors clearer data and helping women feel heard sooner.

Conclusion

Endometriosis should never be ignored. If you have ongoing pelvic pain, heavy periods, or any other symptoms, don’t brush it off as “normal.” Ask questions. Push for answers. Keep seeking help until someone listens.

The more we talk about endometriosis openly, the fewer women will suffer in silence.