Endometriosis effects: why it’s important to be aware and seek support

Ilanna Darcy

Vice Chair, Endometriosis Association of Ireland

Endometriosis is a chronic, progressive, inflammatory disease where tissue similar to the lining of the womb is found elsewhere in the body.

Estimated to affect 1 in 10 women, endometriosis can manifest in many different ways, making it difficult to diagnose and treat. It can wreak havoc in a person’s life, from the teenage years to menopause and, sometimes, beyond.

Possible effects of endometriosis

Pain, one of the main symptoms of endometriosis, can be daily or cyclical. It can also be chronic or mild. This pain can be experienced in different ways, including:

• Pelvic pain, which radiates down the legs or up the back
• Pain during intercourse
• Pain passing stool
• Pain passing urine

Chronic fatigue is frequently experienced. Living with endometriosis can also negatively impact mental health.

Endometriosis diagnosis and stages

A definitive diagnosis is only possible with a laparoscopy. The disease is graded based on prevalence: stage 1 (minimal); stage 2 (mild); stage 3 (moderate); and stage 4 (severe). However, prevalence does not correlate to pain; someone with stage 1 can suffer chronic daily pain while someone with stage 4 may have no pain at all. This complicates diagnosis, as it can be easily missed or confused with other conditions like irritable bowel syndrome (IBS) and ovarian cysts.

Finding the right endometriosis treatment

A GP will usually try hormonal treatment and pain medication first to suppress symptoms. However, many women will need an onward referral for surgical intervention, with excision surgery considered the gold standard treatment. Anyone who suspects they have endometriosis must be well-informed to ensure they get the right support.

Initial indications of endometriosis

Endometriosis is usually triggered by the hormonal shifts associated with a first period. Pain and heavy periods are the most common symptoms. This can impact school attendance and ability to participate in sports and attend social gatherings. It’s important that young girls know this is not normal and that they should seek medical advice and support.

Fertility considerations

Endometriosis is one of the leading causes of infertility and is thought to affect around 50% of sufferers. For some, diagnosis might only be triggered while undergoing fertility treatment, so early awareness is key.

Perimenopausal and menopausal considerations

Endometriosis can complicate hormone replacement therapy (HRT) administration, especially for those using the Mirena coil or those needing a hysterectomy. These patients are normally prescribed oestrogen-only HRT, yet women with endometriosis often benefit greatly from taking body-identical progesterone.