What is Endometriosis and Why does it Affect So Many Women*?

At a Glance:

  • Endometriosis occurs when endometrial tissue grows in parts of the body other than the uterus
  • This tissue reacts to sex hormones leading to the development of scar tissue, causing severe pain
  • Around 10% of women worldwide live with endometriosis
  • The condition is incurable and cannot be prevented
  • On average it takes 7 years for endometriosis to be diagnosed
  • Hormonal therapies and surgery are commonly used to treat endometriosis

What is Endometriosis?

The uterus is lined with cells known as the endometrium. These cells respond to the sex hormones oestrogen and progesterone, and during ovulation these cells thicken and become enriched with blood, making for an ideal environment for the implantation of a fertilised egg. This endometrial layer is cyclically regenerative, being flushed through menstruation and then regrowing. 

In people with endometriosis, endometrial-like cells grow outside of the uterus. These cells are also responsive to sex hormones, but unlike the endometrium cannot leave the body via menstruation. These trapped cells bleed and become inflamed, leading to pain and eventually the development of scar tissue in the lining of the abdomen or other sites.

This scar tissue may cause the uterus, fallopian tubes, ovaries, bowel and bladder to adhere, leading to extremely painful menstruation, reduced fertility and other serious issues.

Endometriosis cannot be prevented, is incurable and can affect any woman who has gone through puberty. According to Endometriosis Australia, around 830,000 - more than 10% - of Australian women are living with endometriosis. 

Endometriosis is benign, but very aggressive and debilitating. Many women are led to believe that painful periods are normal, but for most that shouldn’t be the case. The pain from endometriosis can be so debilitating that it disrupts a person’s ability to attend work or school. For some women the pain occurs sound ovulation and menstruation, but for others the pain can be constant. 

General symptoms of endometriosis include:

  • Pain before and during a period
  • Pain during or following sex
  • Abdominal, lower back or pelvic pain
  • Difficulty or pain having a bladder or bowel movement
  • Pain during ovulation
  • Heavy or irregular menstruation
  • Having a longer period than usual or bleeding between periods
  • Bleeding from the bladder or bowel
  • Abdominal bloating during a period. This can cause pain or may be painless
  • Fatigue
  • Increased instances of anxiety and depression due to pain

As the symptoms and levels of pain vary from woman to woman, diagnosis can be an extremely lengthy process - the average length of time for a diagnosis is a staggering seven years. The reasons for this are varied but include the variations of symptoms, that many women are taught that serious period pain is normal, that the symptoms are uncomfortable to talk about and ultimately that there is no screening test for endometriosis. The only way to be definitively diagnosed is with surgery.  

If you experience pain during your period, don’t ignore your symptoms and tell yourself that it’s normal. Nobody should have to experience ongoing, debilitating pain. The first step is to talk to a doctor. The easiest way to find and book a doctor’s appointment online is with MyHealth1st .

What Causes Endometriosis?

The exact causes of endometriosis are unknown, but there are a number of potential causes:

  • Retrograde Menstruation - also known as backwards menstruation, retrograde menstruation is where some menstrual fluid flows backwards along the fallopian tubes rather than being flushed through the vagina. The fallopian tubes are open ended, allowing the menstrual fluid containing endometrium to pass into the pelvic cavity. It is suspected that the endometrial cells can stick to surfaces in the pelvic cavity and start to grow unchecked outside the uterus.  
  • Immune Response - most women experience retrograde menstruation in some way but only around 10% develop endometriosis, so it is possible that an altered immune response to the endometrial cells being deposited in the pelvic cavity may be part of the process.
  • Genetic Factors - women with a direct relative (mother or sister) with endometriosis are more likely to develop the condition.

In addition to suspected causes, there are a number of risk factors that may contribute to the development of endometriosis , including:

  • Irregular menstruation - long or short cycles, long periods (over a week), irregular cycles or heavy bleeding.
  • Age - having your first period before the age of 11 or having your first child later in life. 
  • Immune system issues - an altered immune response could be responsible for cell growth in the pelvic cavity, but those with allergies like hay fever or food allergies appear more likely to develop endometriosis.
  • Body mass - people with low body weight as well as those who are overweight or obese have a higher risk of developing endometriosis than those with a healthy body weight.
  • Alcohol consumption - heavy drinking increases the chances of developing endometriosis
  • Smoking
  • Lack of exercise - women who exercise more than five hours a week appear less likely to develop endometriosis 

There is no cure for endometriosis, but there are a number of treatments available that can reduce the chances of recurrent episodes or reduce symptoms. Typical treatments for endometriosis are hormonal therapies designed to regulate hormones or the growth of endometrial tissue outside the uterus, as well as surgery to remove scar tissue.

Hormonal treatment options include:

  1. The Oral Contraceptive Pill:
    The oral contraceptive pill is an effective way to manage endometriosis by either ceasing or limiting the number of menstruation cycles a woman experiences. Use of the contraceptive pill can help control pain in the long term but may lead to side effects including irregular bleeding, bloating, breast tenderness, weight gain, nausea and mood change.  
  2. Progestin:
    Progestins are a group of progesterone-like hormones that can slow the growth of endometrial tissue outside the uterus. While it’s not exactly understood how progestins slow this growth, these have been shown to be very effective for approximately 80% of women. Side effects of progestin therapy include acne, mood chances, weight gain, fatigue, bloating and dizziness.
  3. GnRH Agonists:
    Gonadotropin-releasing hormones suppress the production of progesterone and oestrogen by the ovaries, either stopping or suppressing the menstrual cycle. Use of GnRH Agonists essentially kickstart a temporary menopause, allowing the endometrial tissue to shrink or break down naturally while the hormones that cause flare ups are suppressed. Side effects of GnRH agonists are essentially the same as menopause, such as hot flushes, mood changes, muscle pain and vaginal dryness. 

Surgical treatments range from the removal of scar tissue or the repair of damage caused by endometriosis to a full hysterectomy - the removal of the uterus.  

A Hysterectomy is only rarely recommended for women with endometriosis, and is usually only considered an option if the condition is very severe and leads to significant problems with quality of life, the woman does not want to have children and other treatments have proven ineffective. Removing the ovaries along with the uterus results in the best outcomes but women who have a full hysterectomy will have to undergo hormone replacement therapy.

*MyHealth1st recognises that members of the transgender, asexual and non-binary community living with endometriosis don’t identify as women

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