The 5 key symptoms of Endometriosis all women should be aware of

Woman experiencing symptoms of endometriosis. (Getty Images)
There are some key symptoms of endometriosis all women should be aware of. (Getty Images)

March is Endometriosis Awareness month, but while the condition affects one in 10 women, and costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs, endometriosis symptoms are often missed or ignored.

While there are many reasons for this, Valentina Milanova, a women's health expert and founder of gynaecological health company Daye, believes the gender health gap (with a variety of studies have revealing that in many areas of healthcare women experience poorer outcomes) could be partly to blame.

Additionally, however, many women still aren't sure what the possible signs of endometriosis are.

"The current clinical standard of care suggests that surgery is needed to confirm the presence of endometriosis," Milanova advises. "A lot of patient advocacy groups are now fighting to change this standard to one where we instead focus on recognising symptoms and believing female patients and their experiences."

Of course, if women are able to spot and then seek help about their symptoms early, the hope is that they will received a faster diagnosis, particularly as new research from Endometriosis UK shows that diagnosis times in the UK have significantly worsened over the last three years, increasing to an average of 8 years and 10 months, an increase of 10 months since 2020.

This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage.

So it's vital we know what to look out for.

“Endometriosis can have significant impacts on every aspect of womens’ lives – and timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms," explains Ranee Thakar, President of the Royal College of Obstetricians and Gynaecologists (RCOG).

"The barriers to timely diagnosis of endometriosis and other gynaecological health conditions are complex, but it is clear that more action is desperately needed," she continues. "We need education and national communications campaigns to support women and girls to recognise their symptoms and feel confident seeking help; we need clinicians across the health service who listen to women and have the skills and expertise to diagnose and treat gynaecological conditions; and we need investment in services to ensure that we have the right equipment and training for healthcare professionals to achieve timely diagnosis."

With that in mind we spoke to the endometriosis experts to delve deeper into the subject and outline some of the key symptoms of the condition all women should be aware of.

Endometriosis is a condition that affects 10% of women. (Getty Images)
Endometriosis is a condition that affects 10% of women/ (Getty Images)

What is endometriosis?

According to Endometriosis UK endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding.

Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

In the UK, around 1.5 million women and those assigned female at birth are currently living with the condition, regardless of race or ethnicity.

Endometriosis can affect you from puberty to menopause, although the impact may be felt for life.

The five symptoms of endometriosis all women should be aware of

Endometriosis is a whole body, chronic, inflammatory disease. "It is a very common disease that gets dismissed because symptoms are so variable and difficult to diagnose as a result," explains Dearbhail Ormond, founder & CEO of frendo, a digital health solution which supports endometriosis sufferers.

Painful and debilitating periods

While most cases of period pain are caused by contractions in the uterus in endometriosis the pain is caused by endometrial tissue that has grown outside the uterus.

During a period, these endometrial cells break down and bleed. However, this internal bleeding has no way of leaving the body and leads to inflammation, intense pain and a build-up of scar tissue.

Ormond says periods that interrupt work, school or your day-to-day activities are not normal and are not ok, and as a result, can be an indicator of endometriosis.

If period pain is preventing you from carrying out your normal activities, please seek medical advice.

Painful sex is another potential sign of endometriosis. (Getty Images)
Painful sex can be a sign of endometriosis. (Getty Images)

Pain during or after sex

Experiencing pain during or after sex can be a sign of inflammation from the disease around the rectum and vagina. advises that painful intercourse is usually caused by stretching and pulling of endometrial implants and nodules located behind the vagina and lower uterus.

Painful bowel movements

This also includes alternating constipation/diarrhoea. "Endometriosis can affect the bowel in two main forms; superficial (disease found on the surface of the bowel) and deep infiltrated (when it has penetrated the bowel wall)," Ormond advises.

"I myself had superficial disease that was removed (shaved) from my bowel. Some signs of endometriosis on the bowel include pain when opening your bowels, pain during sex and, at times, rectal bleeding."

Lower back pain

Ormond says disease tissue can grow in or around the nerves in the back causing intense pain.

Of course there are many reasons for experiencing back pain, which is why so many women often aren't aware that it could be a symptom of endometriosis.

Bladder issues such as painful urination

Like the bowel, disease tissue can grow around the bladder causing painful symptoms when you go to the toilet.

Woman on the toilet. (Getty Images)
Pain while peeing could be another potential sign of endometriosis. (Getty Images)

What to do if you suspect you may have endometriosis

If you believe you may have endometriosis Ormond advises tracking your symptoms and how you feel, either by diarising in a tool like frendo or by writing it down.

"If you feel something is not normal, trust yourself and find a doctor you can trust and who will listen," she advises. "Go to your appointments as empowered as you can with as much information as possible about how you have been feeling and what you would like from them."

Your doctor may suggest some tests like a scan, an MRI or a laparoscopy, which is still the gold standard in diagnosing and in treating endometriosis.

"It is minimally invasive surgery, but it is still surgery, so make sure you feel it is right for you and that is performed by an endometriosis expert," Ormond continues. "You are the CEO of your own health, so you make the decisions that are right for you."

Endometriosis: Read more

Watch: 'My cramps were so painful it felt like contractions - I was dismissed for five years before my endometriosis diagnosis.'