The Truth About Endometriosis: What Doctors are Afraid to Tell You

Endometriosis is one of the most misunderstood and underdiagnosed conditions affecting women. It’s not just ‘bad period pain’—it’s a progressive disease that can have serious implications for fertility, quality of life, and long-term health. Yet, many women are left in the dark about how this condition evolves over time and what they can do to manage it proactively. Leaving a condition like this untreated for so long has huge implications for future health and happiness, so its important we doctors do some straight talking and make sure you have the knowledge to make informed choices about your long term healthcare decisions. Let’s take a deep dive:

What Is Endometriosis?

Endometriosis is a chronic condition where tissue similar to the lining of the uterus (endometrium) grows outside of the uterus, commonly affecting the ovaries, fallopian tubes, and pelvic lining. This tissue responds to hormonal fluctuations, thickening, breaking down, and bleeding with each cycle—except that unlike normal endometrial tissue, it has nowhere to exit the body. This leads to a cycle of inflammation, scarring, adhesions, and ultimately chronic pain.

Theories of Endometriosis Development

The exact cause of endometriosis is still debated, but several leading theories include:

Retrograde Menstruation: Menstrual blood flows backward through the fallopian tubes into the pelvis instead of leaving the body, implanting endometrial cells in abnormal locations.
Coelomic Metaplasia: This is a fancy way of describing cells in the pelvic lining transforming into endometrial-like cells due to genetic or environmental factors. Please note’ endometriosis is NOT a CANCER, although some of the descriptions make it sound that way.
Immune System Dysfunction: A faulty immune response fails to clear the extra endometrial tissue, allowing it to grow and spread.
Lymphatic or Vascular Spread: Endometrial cells travel through the lymphatic system or bloodstream to other parts of the body.

How Endometriosis Causes Symptoms

Endometriosis symptoms vary in severity and depend on where the lesions are located. The main mechanisms behind these symptoms include:

Inflammation: The immune system responds to misplaced endometrial tissue, triggering chronic inflammation and pain.
Anatomical Distortion: Adhesions and scarring can cause organs to stick together, and irritate nerves leading to pelvic pain and impaired fertility.
Nerve Involvement: Endometrial lesions can directly irritate pelvic nerves, depending on their location, resulting in widespread and ‘referred’ pain that may radiate to the back and thighs.
Cytokines and Prostaglandins: These inflammatory chemicals increase pain sensitivity and may contribute to the heavy, painful periods characteristic of endometriosis.

Now, let’s explore how endometriosis evolves over different life stages and what you can do to manage it effectively.

Endometriosis in Your Twenties: The Time to Take Action

For many, symptoms of endometriosis begin in their teens or early twenties. These often include severe period pain, bloating, painful sex, chronic pelvic pain, digestive issues, and fatigue. However, because period pain is so normalised in society, many women don’t seek help—or when they do, they are dismissed.

Why Early Diagnosis Matters

Endometriosis is progressive, meaning that with each ovulation/menstrual cycle, the disease can worsen. The earlier it is caught, the better your chances of preventing severe complications later in life.

Don’t confuse the term ‘menstrual cycle’ with any regular vaginal bleeding. If you’re taking the pill, for example, you may have a monthly bleed—but this is NOT a menstrual cycle (as it doesn’t have the same surge of hormones) and will not contribute to the progression of endometriosis.

Yet, many women struggle to get a diagnosis. It often takes 7-10 years to be correctly identified. This delay can lead to more extensive disease, including:

Anatomical distortion (scarring and adhesions that change the shape of reproductive organs)
Chronic inflammation (which can create a ‘hostile’ environment for conception)
Painful sex (leading to less frequent intercourse and reduced chances of natural conception)
Ovarian cysts (endometriomas) that can affect ovarian reserve

How Do I Get a Diagnosis?

This can sometimes feel like banging your head against a brick wall, with women feeling like they have to plead with their GP for a referral to gynaecology, only to end up on an endless waiting list for scans and surgery. It’s frustrating, but the gold standard for diagnosing endometriosis is laparoscopy, an operation using a camera to look inside the pelvis.

This is what you need to know in your twenties, thirties, and forties to take control of your health.

Endometriosis in Your Twenties: The Time to Take Action

Why Early Diagnosis Matters

Yet, many women struggle to get a diagnosis. It often takes 7-10 years to be correctly identified. This delay can lead to more extensive disease, including:

Anatomical distortion (scarring and adhesions that change the shape of reproductive organs)
Chronic inflammation (which can create a ‘hostile’ environment for conception)
Painful sex (leading to less frequent intercourse and reduced chances of natural conception)
Ovarian cysts (endometriomas) that can affect ovarian reserve and function

How Do I Get a Diagnosis?

Ultrasound and MRI scans can sometimes detect endometriosis if it has progressed enough to cause anatomical distortion or cyst formation, but smaller lesions can only be identified through direct visualisation via surgery.

Unfortunately, many diagnoses only happen during fertility investigations, when the disease has already progressed.

Managing Endometriosis in Your Twenties

If you have endometriosis or suspect you do, taking action early can prevent severe disease progression. The best approach is to suppress ovulation to limit the cycle of inflammation and tissue growth. This can be done through hormonal therapy—but finding the right one is crucial. Many women stop their treatment because they are prescribed a hormonal option that doesn’t suit them, rather than working with a doctor to find the best solution for their body.

If you’re not ready for children, choosing a hormonal therapy that you can tolerate is one of the best things you can do to protect your fertility and future health.

Remember: being given a diagnosis will not alter the disease or improve your symptoms. The treatment for the suspicion of endometriosis (cyclical pelvic pain and heavy/painful periods) remains the same, so its best to treat the symptoms correctly while a diagnosis is being sought.

What Happens if You’re Struggling to Get a Diagnosis Through Your GP?

Many young women come to me with chronic pelvic pain they’ve had since their teenage years, only to be told:

“This is just being a woman.”
Given a contraceptive pill (which often doesn’t suit them and produces intolerable side effects, leading them to stop taking it).
Prescribed painkillers or antidepressants instead of real treatment.
Given a normal pelvic scan, which leads to no further action being taken.

This is NOT acceptable for someone suffering these symptoms. Many women only get referred for proper diagnosis years later.

The Good News

If your symptoms sound like endometriosis, early-stage disease CAN and SHOULD be well controlled with the right individualised hormonal therapy. A GP can manage this, but finding a clinician with expertise in hormonal treatments is crucial.

Leaving endometriosis untreated in your twenties can store up problems in your thirties and beyond. Take action now.

Endometriosis in Your Thirties: Fertility Considerations

For many women, the thirties are when endometriosis really starts to make an impact—especially when trying to conceive.

How Endometriosis Affects Fertility

Endometriosis can impact fertility through several mechanisms:

Anatomical Distortion – Adhesions and scarring can block the fallopian tubes or distort the uterus, making conception difficult.
Hostile Pelvic Environment – Inflammation can disrupt fertilisation and implantation.
Inflammatory Factors – Cytokines and other substances interfere with ovulation and embryo development.
Painful Sex – Many women experience dyspareunia (pain during sex), leading to less frequent intercourse.

Trying for a Baby? Time Is Key

If you’re planning to have children, sooner is often better. Endometriosis worsens with each ovarian cycle, making conception more difficult over time.

Considering egg freezing? Be cautious—while it’s an option, live birth rates following this process are small. Don’t be misled by clinics promising guaranteed future success.

Endometriosis in Your Forties: Long-Term Management

By your forties, hormonal shifts, menopause, and chronic pain become major concerns. While menopause may slow progression or ultimately cure endometriosis, symptoms can persist due to estrogen production from fat cells and adrenal glands.

Anatomical distortion from past endometriosis can still cause chronic pelvic pain, especially if adhesions affect nerves, the bowel, or pelvic wall.

Why Hormonal Management Is Still Important

Even in your forties, hormonal treatment can help prevent large hormonal surges and reduce symptoms. If left untreated, severe endometriosis can contribute to:

Chronic pelvic pain
Bowel and bladder complications
Painful sex and low libido

If you’re starting HRT, ensure you receive the correct dose to prevent flare-ups—especially if you’ve had a hysterectomy, as progestogens may still be needed if you have a diagnosis of endometriosis.

The Problem With Misinformation and Lack of Support

One of the biggest issues women with endometriosis face is misinformation and lack of medical support. Many doctors fail to explain the progressive nature of the disease or the importance of hormonal treatment.

This leads to women:

Stopping hormonal therapy prematurely due to side effects without exploring alternatives.
Underestimating the severity of their condition until fertility struggles arise.
Lacking emotional support, as endometriosis is often misunderstood.

Advocate for yourself, seek specialists, and connect with communities that provide real, evidence-based information.

Final Thoughts: Take Control of Your Endometriosis Journey

Push for an early diagnosis.
If you want a family, prioritise it! There is never a ‘right time’ and the longer you leave it, the harder it will get to conceive.
Find an effective hormonal treatment that works for you.
Seek doctors who listen and support groups for guidance.

Struggled with getting diagnosed or managing endometriosis? Share your experiences below!