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Expert advice on living with endometriosis

It’s a debilitating condition for many women but New Idea columnist and GP Dr Jana Pittman says there is support available.
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The pain rips through your back running down your inner thighs, the heavy cramping so bad you feel weak at the knees.

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It’s that time of the month again, where the daily ache that can usually be managed with heat packs and Naprogesic becomes a nightmare. Not only is your period so heavy that maxi pads aren’t up to the job, but it also hurts to open your bowels and taking a wee is no treat either.

Then add in the debilitating fatigue and inability to engage in meaningful sex and life is simply miserable.

Endometriosis is the bane of many women’s lives, affecting 11.4 per cent of Aussie women during their reproductive years – that’s around 200 million women worldwide! For some women, the pain worsens before and after their period, for others it’s terrible all month. 

‘Endo’ occurs when tissue similar to the lining of the womb (called the endometrium), shows up elsewhere such as on the ovaries, fallopian tubes, bowel, and pelvic ligaments.

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When I was asked to write this column, I was lucky to be able to consult with one of my amazing mentors Professor Jason Abbott who is a world leading expert in endometriosis and one of my PhD supervisors at the University of New South Wales.

The exact cause of endo still requires considerable funding and further research, but genetic factors are important (daughters of mothers with endo are seven times more likely to have it themselves). 

Other factors likely ‘trigger’ the disease including retrograde menses (blood flowing backwards through the fallopian tubes into the abdomen) or a faulty immune system that fails to find and destroy abnormally growing endometrial deposits. There may in fact be types of endometriosis, requiring different treatments.  We just do know them all yet. 

While there is no cure currently, there are several ways to help control symptoms.  What’s incredibly important, is to see your family doctor.

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They may suggest starting over-the-counter pain relief (such as paracetamol and non-steroidal anti-inflammatories) or opting for hormonal control like the oral contraceptive pill (OCP) and other hormonal tablets, hormonal shots (depo-provera or nasal sprays), or an intrauterine device (Mirena). These suppress ovulation and menstruation, which in turn aims to slow or stop endometriosis growth.

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Some women may need a referral to a specialist gynaecologist, who can then explore their pain further, organise pelvic scans to help establish the diagnosis, and they may consider surgery (laparoscopy).  If endo is the cause, and the deposits are accessible, the gynaecologist may try to excise (cut out) the endo.

However, it can grow back and at times, and may also involve other organs such as the bowel so this requires extensive surgery and a lot of planning.

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Finally, chronic pelvic pain caused by things like endometriosis is heart breaking for many women, and often they feel unheard and helpless. If this is you, continue to speak up, support others, and know you are not alone.

For the lucky ones, like me, who only have symptoms a few days a month, be aware that it’s likely one of your close friends will suffer with this condition terribly. Reach out, offer then a foot rub or an ear to listen. It could go a long way.

For more information on endometriosis, please see your family doctor. You can also find more information by visiting Endometriosis Australia (endometriosisaustralia.org), Jean Hailes (jeanhailes.org.au) or downloading the factsheet Treating Endometriosis at (thewomens.org.au).

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