Nearly 1 in 10 Kiwi women will have endometriosis, but many women do not know the difference between normal menstrual discomfort and the painful symptoms of endometriosis.

Endometriosis comes with a tangled knot of symptoms, with period pain just being the tip of the iceberg. The sooner women can understand and identify the signs and symptoms of endometriosis, the sooner they can speak with their health professionals, get diagnosed, and start treatment.

What is Endometriosis?

Endometriosis is a common inflammatory disease that occurs when tissue, similar to the lining of the uterus (endometrium), grows beyond the uterus. This tissue acts like the lining inside the uterus would during menstruation (it thickens, breaks down and bleeds during the menstrual cycle) but is outside the uterus, resulting in significant pain and inflammation.

Over time, the cycles of tissue growth and breakdown can cause scarring and damage in the affected area, and in more serious cases, infertility.

Signs & Symptoms

While some women experience symptoms during their first periods, others develop endometriosis later in life. Symptoms are usually cyclical and typically happen around the time of menstruation but are also reported outside of menses, and sometimes do not follow any pattern, making diagnosis challenging in some women.

For women concerned that they may have endometriosis, these are the signs and symptoms to look out for:

1. Pelvic Pain

The main symptom of endometriosis is pelvic pain. Although many people experience cramping during their periods, those with endometriosis describe period pain that’s far worse than usual. Pelvic pain and cramping may start before a period and last for days into it.

Pain may vary from mild to severe and present as cramping, stabbing sensations, or a dull ache and is often felt in the abdomen, lower back and pelvic area. Pain may become worse over time, and in some cases, result in nausea, vomiting, dizziness, and fainting. Many girls and women also suffer from both social isolation and inability to attend school, university or work as a result of this severe pain. The quality of life for women with endometriosis is greatly impacted.

2. Menstrual Irregularities

Women with endometriosis often experience irregular and abnormal menstrual cycles. This includes heavy bleeding, prolonged periods, spotting between periods, or blood in urine or stool during menstruation.

3. Painful Intercourse

Pain during or after sexual intercourse (dyspareunia), is another common symptom of endometriosis. This pain may be deep, sharp, or throbbing and can persist even after intercourse.

4. Digestive System Problems

Endometriosis can impact the digestive system and cause bloating, constipation, diarrhoea, nausea, and abdominal cramping. Women are most likely to have these symptoms before or during menstruation.

5. Urinary Issues

People with endometriosis may experience urinary symptoms like painful urination, presence of blood in urine, UTIs, or an increased need to urinate, especially during menstruation.

6. Infertility

Endometriosis can cause an increased risk of infertility or sub-fertility (delayed conceiving). Around 30-40% of people with endometriosis may face difficulties getting pregnant, so for some people, endometriosis is first found during tests for infertility.

7. Other symptoms

Other symptoms of endometriosis can be tiredness, low energy, pain in other places, such as the lower back, pain when you exercise, and premenstrual syndrome (PMS).

Nearly a third of women with endometriosis have no obvious symptoms. Often, they find out they have endometriosis when getting surgery or visiting the doctor for other reasons. To be proactive with early detection and/or treatment of endometriosis, it is important for women to discuss any of the above symptoms with their nurse/doctor. This could be in a booked appointment or during the next cervical smear test.

nib’s Top Tip: Track your symptoms

If you think you may have endometriosis based on these symptoms, it’s essential to consult a healthcare provider. Your doctor may ask about your pelvic pain, including the type, how often it affects you, and how severe your pain is.

It’s important to note down your symptoms so you can clearly articulate to a healthcare provider what you are experiencing and how it’s impacting your life. Track things like how often you are in pain and the severity, any painkillers you are using, and whether it's escalating.

Diagnosing endometriosis can be complex, as its symptoms often overlap with those of other conditions such as pelvic inflammatory disease, ovarian cysts, or irritable bowel syndrome (IBS). But by learning as much as you can about endometriosis and tracking your symptoms, the diagnostic process can be easier for you and your doctor. Where severe symptoms are present, a diagnostic laparoscopy is the gold standard test to definitively confirm endometriosis, and if found, to treat it at the same time.

Early diagnosis of endometriosis helps women make sense of their suffering and can be the first step towards living pain-free. Our Women’s Wellness programme partners eligible nib members with a specialist health coach to help address the causes behind symptoms with simple, actionable lifestyle changes.

For more information on how our Women’s Wellness programme can help manage your endometriosis symptoms, and whether you may be eligible for this programme, visit our health management page.