As Endometriosis Awareness Month begins, a gynaecologist outlines the key symptoms everybody should be aware of
Awareness around endometriosis – the chronic and sometimes debilitating gynaecological condition that affects 10% of women worldwide – is finally growing.
This is thanks in part to celebrities like Lena Dunham and Whoopi Goldberg speaking out about their experiences, but there’s still a way to go.
It’s believed that one in 10 women of reproductive age are affected, yet according to the charity Endometriosis in the UK, it takes seven-and-a-half years on average to be diagnosed.
There’s no single cure for endometriosis but getting the right treatment and advice can make a big difference, and surgery can sometimes help – which makes being aware of the potential signs and symptoms all the more important.
With Endometriosis Awareness Month taking place throughout March, here, Mr Amer Raza, consultant gynaecologist at The Lister Hospital, explains more…
Firstly, what exactly is endometriosis?
"Endometriosis occurs when the tissue lining a woman’s uterus (called the endometrium) grows in other areas of the body – for example, in the fallopian tubes, on the ovaries, or in the tissue lining the pelvis,” explains Raza.
He says the endometrial cells found outside the uterus behave in the same way they would inside the womb, mimicking the menstrual process by building up and breaking down monthly.
However, unlike with a period, the blood has nowhere to escape. “As a result, it can sometimes accumulate, triggering cysts on the ovaries or elsewhere in the abdomen, and making the organs inside the abdomen stick together,” says Raza. This can lead to severe pain that can have a significant impact on quality of life.
What causes it?
The exact cause of endometriosis is still unknown, but Raza says there are several theories.
“The most accepted theory is retrograde menstruation,” says Raza. “This is where the womb lining doesn’t leave the body properly during a period, but travels back up the fallopian tube and embeds itself in the organs surrounding the pelvis.
“Another theory is that endometriosis could be inherited genetically, as it is often diagnosed in sisters and daughters of women who have the condition.
“Other considered causes include circulatory spread (where tissue particles spread around the body in the bloodstream), immune dysfunction, environmental causes (where environmental toxins penetrate the body and reproductive system), and metaplasia (where cells outside the uterus change into endometrial cells to adapt to their environment).”
What are the symptoms that I should be looking out for?
Endometriosis symptoms can sometimes be vague, or easily dismissed as just a ‘normal’ part of having a period. However, these are some of the key warning signs:
Very painful and heavy periods
Many women with endometriosis will experience very painful periods, that are occasionally very heavy. “Because most women will suffer with some degree of cramping when they are approaching their menstrual cycle, it can be hard to judge what is ‘normal’ pain and what is ‘abnormal’ pain,” Raza acknowledges.
“If you are experiencing menstrual pain that prevents you from working or going about your usual day-to-day activities – and over the counter painkillers are doing nothing to improve the pain – make an appointment with your local GP, as this could be a sign you have endometriosis.”
Ongoing pelvic pain could also be an indication. Raza says this is triggered by the endometrial tissue and cells which are spreading around your reproductive organs.
“The pelvic pain is cyclical initially but as the scarring increases, the cyclical nature changes into chronic pelvic pain,” he notes.
“Depending on the location of the endometrial tissue or cells, some women with endometriosis may experience pain during sex,” says Raza. “If the tissue is stretched during intercourse, pain can be significant, and for some, sexual penetration is not possible. Pain on deep penetration is another sign of scarring inside due to endometriosis.
“It’s important to note that pain during sex can come from a variety of causes, so you should see your GP to get this checked out regardless of whether or not you think endometriosis is the root cause.”
Some women with endometriosis will experience difficulty in becoming pregnant, says Raza. “One common theory [for this] is that the inflammation and irritation caused by endometriosis can affect the women’s ‘fimbria’, which picks up the egg and transports it into the Fallopian tube,” he explains. “Swelling and scarring of the fimbria could mean that the egg may never reach its destination. The fluid in the abdomen can also hinder the meeting of sperm and egg, hence making it difficult to get pregnant.”
Not everybody with endometriosis will experience fertility difficulties, however. “It’s thought that [those with] minimal to mild endometriosis have an almost normal chance of conception, however for those with moderate to severe endometriosis chances of natural conception are reduced,” says Raza.
Pain while using the toilet
Endometriosis can cause pain during bowel movements. Raza says: “It’s estimated that around 60% of women with endometriosis will develop at least one symptom in their gastrointestinal tracts.”
This is because endometrial implants can develop in certain areas of the bowel or on nerves and ligaments around the bowels, causing pain throughout this area. You might also experience episodes of diarrhoea, constipation and uncomfortable bloating as a result.
Pain during urination is also common. “When the endometrial cells embed themselves into organs – like the bladder – they tend to burrow deep within the walls of the organ. These cells then react in the same way as they would in the womb, and lead to blood becoming trapped within the organs, which in turn becomes inflamed.
“If your bladder is affected by endometrial cells then you may experience pain during urination, or an overactive bladder, where you have feelings of urgency or frequency,” Raza notes.
“Around half of women diagnosed with endometriosis will experience chronic fatigue,” says Raza. This is believed to be caused by the ongoing inflammation inside the body. “Because the body is continually attempting to heal and repair the inflammation wounds that endometriosis is causing, this can trigger a variety of immune responses and result in significant fatigue,” Raza adds.
Heavy periods can lead to low iron levels too, which can also be a common cause of fatigue in women.
What should you do?
If you’re experiencing any of the symptoms associated with endometriosis, have a chat with your GP. It might be worth keeping a symptom diary, to take with you to the appointment.
For more information, see endometriosis-uk.org.