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Endometriosis: I am #1in10women

HerCanberra Team

March is Endometriosis (‘Endo’) awareness month.

#1in10 women experience this chronic and often debilitating condition. For some this is easily managed for others it is an unpredictable disease which affects their ability to work, enjoy physical and sexual relationships, socialise, study, reproduce, and to live life pain free.

To give an idea of the impact that it can have on a persons life, I am also a type 1, insulin dependent diabetic and if I could choose only 1 of my diseases to be cured (for me!) it would be the endometriosis – it has a far more significant impact on my life and the lives of those who love me.

Endometriosis has taken many things from me. It took my youth – when friends were carefree, partying and traveling, I was constantly bleeding heavily, in horrific pain, in and out of hospital  and desperately seeking a husband, terrified that with every month that passed my chance of ever becoming a mother faded away.

When others were falling in love and having months on end of raunchy lustful encounters I was trying to explain to partners there was no point in falling in love with me if having children was a deal breaker.
Luckily for me, I met the right man who sees past my disease, loves me for me and undertook to fight this battle with me (despite that, at 21 when we had only been together for a few months me being told my only options were to have a baby or a hysterectomy – which is bullshit, by the way).

13 bouts of surgery, IVF, recurrent miscarriages, the heartbreak of losing one of our twins and a surprise naturally conceived pregnancy later, we are so grateful to have our miracle family.

Thomas is 5, Campbell is 3 and our little surprise Marleigh is 6 weeks old. Our little family is complete and now that we have a daughter our determination to raise awareness about this debilitating condition is even stronger. Especially given the misinformation that we were given that “having a baby cures Endo”, it most certainly does not and I expect to live the rest of my life navigating this chronic condition.

If you’re a woman who suffers from endometriosis, knows someone who does or wants to find out more, the Canberra Endometriosis Network is presenting Illuminating Endometriosis on Saturday 19 March at the National Museum of Australia. This free program of events will be first event of its kind for endometriosis in Canberra.

Aimed at both health professionals and consumers, Illuminating Endometriosis will focus on three key themes: collaboration, empowerment and networking. As well as being held during global Endometriosis Awareness Month, the event coincides with Canberra Sky Fire, and its lakeside location will offer attendees exceptional views of the fireworks.

Keynote speakers will include:

  • Dr Susan Evans, Gynaecologist, Laparoscopic Surgeon and Pain Management Specialist
  • Dr Valeria Lanzarone, Obstetrics and Gynaecological Ultrasound Specialist
  • Dr Uche Menekaya, Gynaecologist, Sonologist and Laparoscopic Surgeon
  • Dr Jenny Leung, General Practitioner
  • Assistant Professor Irmina Nahon, Physiotherapist
  • Melissa Parker, Registered Nurse Coordinator and Researcher
  • Jane Kearney, Sex Therapist

Illuminating Endometriosis is designed to reflect consumers’ emerging role in the management and treatment of their condition. Addressing the critical advancement of pelvic ultrasound in the early diagnosis and appropriate triage of patients with endometriosis, there will even be a live demonstration of this pre-diagnostic tool. Illuminating Endometriosis is coordinated and organised by the Canberra Endometriosis Network with support from the Canberra Endometriosis Centre and JUNIC Specialist Imaging and Women’s Centre.

Associate Professor Susan Evans

Associate Professor Susan Evans

The events will run from 1pm until 9pm on Saturday 19 March. Registration begins at 2pm.  Tickets are free and available via EventBrite. Attendees are, however, invited to make a donation.

Babies in arms are welcome.

About Endometriosis

1 in 10 Australian women suffer from Endometriosis. Endometriosis is diagnosed when the tissue that is similar to the lining of the uterus (womb) occurs elsewhere in the pelvis or other areas of the body and causes pain and/or infertility.

There is no definitive cause of endometriosis and no connection between the amount of disease and the severity – or even presence – of symptoms.

Traditionally, diagnosis has only been possible via laparoscopy, a surgical procedure, though women can now benefit from an ultrasound-based approach to preoperative diagnosis.

There are three kinds of treatments for endometriosis, including medical treatments (drug therapy), surgical treatments (involving an operation) and allied treatments (physiotherapy, psychology, alternative medicine). Most treatments for endometriosis will not eradicate pain. Neither pregnancy nor Hysterectomy guarantees reduction or eradication of pain.

March is recognised globally as Endometriosis Awareness Month.

About the Canberra Endometriosis Network

The Canberra Endometriosis Network raises awareness of how endometriosis/pelvic pain affects day-to-day living, lifestyle and emotional health. Comprising more than 250 members, it offers support by means of regular community meetings/groups and is open to sufferers of all ages.

The network recognises that there is no single solution or method for coping with endometriosis/pelvic pain. Every woman’s experience is individual and different people deal with emotional issues in different ways.

The network promotes the notion that finding different ways to effectively deal with the stress and strain of living with endometriosis/pelvic pain can have a positive influence on health and wellbeing.

An insight into the lives of Canberra women living with Endometriosis can be found by viewing the Canberra Endometriosis Network (CEN) Photo a day challenge on Instagram and connecting with the CEN network via Facebook or Twitter. 


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