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The following article on silent endometriosis was published on bodyandsoul.com.au for Endometriosis Awareness Month.

Gynaecologist, Dr Devini Ameratunga explains why silent endometriosis can take up to ten years to diagnose, and the symptoms you need to be on the lookout for. 

Endometriosis is not an uncommon disease. It’s estimated to affect approximately one in 10 women of reproductive age and up to half of infertile women. However, it is difficult to accurately determine its prevalence because women can have varied symptoms or (for around ten per cent of sufferers) no symptoms at all.This is called ‘silent endometriosis’, or asymptomatic endometriosis. It can take many years to diagnose, but once identified can sometimes requires surgery to treat. If left untreated, the disease can progress, affecting fertility and requiring more difficult surgery.

March is Endometriosis Awareness Month, making it the perfect time to talk about this quiet but painful disease, in the hope that more Australian women can receive early intervention.

What is silent endometriosis?

Women with endometriosis classically present during their reproductive years with pelvic pain (painful periods and painful intercourse), heavy bleeding, infertility or an ovarian mass.

Other presentations include painful bowel movements or urination, and women can also be incidentally diagnosed during surgery or imaging for other conditions.

On the other hand, ‘silent’ endometriosis has no overt symptoms, which means some women will only discover they have the disease when being investigated for problems – such as infertility.

Upon further investigation, suffers may have subtle changes affecting other organs, such as bladder and bowel habits, or generalised abdominal discomfort, back pain or seemingly unrelated symptoms such as nausea.

What are the main signs of silent endometriosis?

Silent endometriosis is most commonly diagnosed when investigating for other problems such as infertility. Other signs will differ, depending on the organ affected. For example, if the bladder is affected you may experience blood in the urine, bladder irritability (feeling the need to go more frequently) and pain when urinating.

If the endometrial growths occur on the bowel, you may experience diarrhoea, painful bowel movements or bloody stools. You could also experience pain on caesarean section scars (if tissue is growing there).

If endometriosis occurs in the ovaries, an ultrasound may reveal the presence of blood-filled ‘chocolate’ cysts. These differ from typical ovarian cysts due to their brownish appearance, caused by a build-up of old blood.

Further possible signs to look out for include pain at the time of ovulation and recurring spotting (light bleeding) in the days before your period. While these symptoms do not necessarily mean you have endometriosis, they are all worth discussing with your healthcare professional.

Does silent endometriosis mean less severe endometriosis?

Unfortunately endometriosis can be deceiving, and the severity of the condition does not necessarily correlate with symptoms. This means that a woman may have severe pain with menstruation, yet a mild form of the disease.

At the same time, another woman might have severe endometriosis whilst experiencing minimal, or even no, symptoms.

So, what should you do if you suspect you have endometriosis?

Because of inconsistencies in symptoms, and due to many other problems giving similar symptoms, an endometriosis diagnosis can take up to ten years. This can impact fertility, so it’s important you advise your GP or gynaecologist if you’re experiencing any of the symptoms above – including the less obvious ones.

The only way to obtain a definitive endometriosis diagnosis is via a biopsy taken during surgery, which carries inherent risk. Therefore, a thorough investigation of symptoms and imaging may be used to presumptively diagnose patients without surgery, allowing medical practitioners to initiate treatments.

If that doesn’t work, or significant disease is expected, a clinician may suggest proceeding with surgery. There is no specific recipe, and treatment and investigation needs to be individualised. Even in the fertility patient, surgery for endometriosis if suspected may not be the first thing to do.

We need to balance symptoms, age of patient, chances of success with surgery and fertility treatment and risks to the patient, amongst other factors.

The outlook for endometriosis

Endometriosis can impact women (and their partners) significantly. Relationship strain, loss of productivity, financial concerns, chronic pain and infertility all have repercussions.

Although in most cases endometriosis is not dangerous, it has been linked to poorer pregnancy outcomes and increase in some types of ovarian cancers.

Thankfully, more women and men are talking about endometriosis now due to increased exposure in the media and more funding for research and treatment of the disease.

If you are experiencing any of the symptoms above, or struggling to fall pregnant, talk to your GP or gynaecologist sooner rather than later.

The above article by Dr Devini Ameratunga was published on bodyandsoul.com.au on 19 March, 2020.