Battling endometriosis, a chronic, silent and painful disease that affects 1 in 10 women

Endometriosis is an elusive and invisible disease that can “hide” in the body undetected. For many of the women with endometriosis we take care of in our gynaecological clinics in KK Women's and Children's hospital (KKH), they may have suffered years of pain and oscillated between different doctors and treatment modalities before knowing the true nature of their adversary.

Endometriosis is a chronic condition that affects about one in 10 women in their childbearing years.

In women with endometriosis, the cells normally found in the endometrium, or the inner lining of the uterus, grow outside the uterus.

These endometriotic lesions may then cause localised inflammation, scarring in the pelvis and the development of ovarian endometriotic cysts.

In severe cases, they may involve other organs in the body including the urinary bladder, ureters and bowel.

It is a disorder that is dependent on the female hormone estrogen, which is why it tends to regress after menopause.

HARD TO DIAGNOSE

Women with endometriosis may suffer from a myriad of symptoms that are non-specific, including:

• Painful periods

• Chronic pelvic pain

• Fatigue and lack of energy

• Pain during sexual intercourse

• Painful bowel movements

• Difficulty getting pregnant

These symptoms are often confused with other conditions such as irritable bowel syndrome or pelvic inflammatory disease, resulting in a delay in referral to the gynaecologist.

Studies show that women with endometriosis see, on average, seven doctors before a diagnosis is made.

Other factors contributing to the complex diagnostic challenge include a lack of awareness among the general public and healthcare providers, with symptoms being dismissed or normalised, and a stigma around discussing menstruation prevents some women from talking about endometriosis symptoms leading to a delay in women seeking treatment.

Adding further to the enigma of endometriosis is that there are currently no reliable biomarkers that can diagnose it.

This is unlike other medical conditions such as diabetes, which can be easily diagnosed with blood glucose levels and the biomarker known as Haemoglobin A1c.

While certain types of endometriosis such as endometriotic ovarian cysts can be seen from pelvic ultrasound scans, other types such as the superficial or deep infiltrating endometriotic lesions can remain almost invisible until surgical diagnosis.

The gold standard investigation to diagnose endometriosis is a laparoscopic or keyhole surgery to inspect the pelvic organs, but this is inherently invasive with surgical risks. 

As a result, the delay from the onset of symptoms to the diagnosis can be up to seven to 10 years.

This long interval in turn leads to a progression of the disease, prolonged pain, loss of fertility, psychological stress, strain on personal relationships, loss of workplace productivity and poor quality of life.

A CASE STUDY

One of my patients who just turned 40 had gone through an open abdominal surgery overseas to remove her left fallopian tube and ovary due to a large endometriotic ovarian cyst many years ago.

When she first consulted me at the clinic last year, her endometriosis had recurred, with her pelvic ultrasound scan revealing an even larger endometriotic cyst measuring 8cm on her remaining right ovary.

At that point, she had already given up all hope for conceiving and was extremely afraid of recurrence.

She declined to remove the cyst from her right ovary and made the resolute decision instead to have her right fallopian tube and entire ovary removed, which we were able to perform through minimally invasive keyhole surgery.

As she no longer had both her fallopian tubes and ovaries, she would no longer be able to bear children and would immediately undergo surgical menopause. This is when surgery causes a woman to undergo menopause rather than the natural aging process.

My patient is just one of the many women who had to make difficult choices because of their battle with endometriosis. 

In severe cases, the extensive scarring “glues” the pelvic organs together, resulting in a “frozen pelvis”.

This distorted anatomy can make surgery for endometriosis extremely challenging, with an increased risk of injury to surrounding structures like the ureters and bowel.

In cases where the pain is persistent, hysterectomy or removal of the womb, may be the last resort. 

TENDENCY TO RECUR

About one in two women with endometriosis will experience a recurrence of symptoms over a period of five years.

I often emphasise to my patients that endometriosis is a chronic, insidious condition that can relapse and worsen silently, and there is a role for long-term medical treatment to control and suppress disease progression.

Medical therapy may provide effective pain relief in 60 per cent of women and this can be either non-hormonal medication such as painkillers, or hormonal therapy that interferes with the estrogen levels that endometriosis depends on. 

Hormonal treatment can be in the form of the combined or progesterone-only pills, the hormonal intrauterine device, or drugs called gonadotropin-releasing hormone (Gn-RH) agonists or antagonists that can induce a menopausal state. 

Newer drugs are currently being studied and could increase the medical therapeutic options for endometriosis in the near future. 

AN OBSTACLE TO HAVING CHILDREN

About 30 to 50 per cent of women with endometriosis encounter challenges conceiving.

Endometriosis can negatively impact a woman’s fertility in several ways:

• Inflammation and scarring

• Damaged fallopian tubes

• Impaired embryo implantation

• Poorer egg quality

• Decreased egg supply or lower egg reserve

The decision to perform surgery in a woman who wants children must be considered carefully.  

The goals of surgery are to diagnose and treat endometriosis, restore anatomy, improve fertility and reduce pain. 

However, the removal of an endometriotic ovarian cyst, even when done meticulously by a trained laparoscopic surgeon, can inadvertently lead to further reduction of the egg reserve.

There is a 2.5 per cent chance of premature ovarian failure for women with bilateral endometriotic cysts following surgery, and this is a devastating consequence that would render the woman infertile.  

Because of the adverse effects of endometriosis on fertility, women with endometriosis may require artificial reproductive technologies such as intrauterine insemination or in-vitro fertilisation to achieve a pregnancy. 

SEEK TREATMENT EARLY

I urge women with symptoms of endometriosis to come forward earlier, so that their pain may be better managed and their fertility may be preserved and protected.

An online endometriosis questionnaire is readily available on KKH’s website and may serve as a guide to women who are deciding if they should seek treatment.

Women suffering from endometriosis need not feel disheartened.

There is a global network of scientists, physicians, surgeons and patient advocates who are investing in campaigns to improve evidence-based education, clinical care and research in endometriosis, to give hope to those suffering from this disease.

The importance of early detection, appropriate treatment and prevention of complications is crucial in reducing the burden of endometriosis across a woman’s lifespan.

ABOUT THE AUTHOR:

Dr Celene Hui is a consultant at the minimally invasive surgery unit of the division of obstetrics and gynaecology in KK’s Women’s and Children’s Hospital