Endometriosis sufferer, Nevena Rosic, shares her experience battling the debilitating condition that affects so many Australian women. Recognising the signs of this disease is paramount in treatment, writes Alyssa Batticciotto.

I need to have a child by 30, and even then, I will struggle to carry the child to term,” says Nevena Rosic.

In 2014, 19-year-old Nevena experienced an appendix rupture, internal bleeding, infection and cysts on her ovaries before a colonoscopy identified the root of the problem – stage four endometriosis.

Endometriosis is a condition that many Australian women aren’t familiar with. However, for one in ten women it is a crippling disease that can exponentially impact their relationships, capacity and ability to work and study, and mental and physical health.

The disruptions to daily routine, and the pain itself, can create fear for those who suffer. “Sometimes I can’t do every day living,” says Nevena.

Not only can this condition inflict harm and chronic pain, it is a progressive disease which can worsen over time. The key is to detect symptoms early and use necessary treatment to help manage the condition. However, for those who have never heard of endometriosis before, this can be a confusing and scary time in their lives.

“One day you can be fine and then all of a sudden I’ll have cramps, double vision and nausea,” she says.

Endometriosis is a condition in which cells similar to those that line the uterus – the endometrium – grow in locations outside the uterus.

One of the most fearful things about this condition is that there are no known triggers.

 Signs/Symptoms

There is no specific formula in identifying endometriosis but there are some key signs to look for. Early detection is imperative in reducing the risk of further complications so seeing your doctor when experiencing any of the symptoms is highly important.

The symptoms of endometriosis include:

• Painful periods
• Pain during sex
• Pelvic or ovulation pain
• Pain in the lower back and thighs
• Bowel symptoms – pain using your bowel
• Bladder symptoms – pain when passing urine
• Reduced fertility
• Nausea and lethargy
• Premenstrual symptoms

“When the time of the month comes, I’m bedridden,” says Nevana.

It can be a genetic disease so females with family members affected should be wary of the symptoms associated, this is especially the case in families where mothers or sisters are affected.

Despite being relatively educated due to her own mum’s diagnosis, she thought there was “no point looking into it because [she’s] never going to have it”, despite the reg flag of family history. This does point to the larger issue around lack of education.

Dangers

This disease can affect the entirety of the woman’s reproductive system. As the cells in the uterus (and the damaged cells outside) respond to the oestrogen hormone and do not respond by exiting the body but rather can cause rigorous bleeding and fibrous scar tissue to form.

I was constantly in and out of hospital, the staff know me by now the second I turn up at emergency, says Nevena.

Infertility is an incredibly large danger that women with endometriosis can possibly suffer, especially if not treated quickly enough.

Ovarian cancer does occur at higher than expected rates in those with endometriosis and although rare, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in those who have this condition.

As you can see, the dangers from this disease can have everlasting impact on those who suffer with it however it isn’t widely publicised as a debilitating condition.

Increased Risks

Some of the suspected risk factors for endometriosis include:

• Menstrual cycle factors – including early age of first period (menarche), heavy or painful periods, short menstrual cycles (less than 27 days) and long periods (more than one week)
• Allergies – such as food, eczema and hay fever
• Obesity
• Family history of endometriosis
• Exposure to toxins – some research suggests that persistent environmental pollutants, such as dioxins, might contribute to the development of endometriosis

Preventative measures

Factors that may help reduce your risk of endometriosis include:

• Aerobic exercise for five hours per week – studies show a 50 per cent reduction in the risk of recurrence
• Childbearing – for some women, this reduces the risk that endometriosis will recur.
• Hormones such as the contraceptive pill as it prevents ovulation and may suppress endometriosis

Diagnosis

Oftentimes your local GP will try a process of elimination to cure the pain of those suffering with endometriosis.

If no progress can be found, they will then move onto one of the following to help diagnose:

• Blood tests
• Laparoscopy – a surgical procedure performed under general anaesthetic, where a slender medical instrument like a small telescope with a camera attached is used to examine your pelvic organs.
• Ultrasound
• Colonoscopy – while you are sedated, a medical instrument with a camera attached is used to examine your bowel. This is done if it is thought the endometriosis could also be affecting your bowel.

Treatment

There are a few options to treat endometriosis, below are some of the options available:

• In cases of mild endometriosis, simply monitoring your condition with your GP is sufficient enough
• Hormone controlling pills including progestins, gonadotrophin-releasing hormone (GnRH) agonists and the oral contraceptive pill can help to diminish the growth and side effects of endometriosis
• Serious surgery may be a considered option if symptoms become unbearable

Many women have found that the use of naturopathy can also have remarkable results with their symptoms. Some of these can include:

• Herbal medicine
• Traditional Chinese medicine
• Nutritional therapies
• Massage
• Yoga

The only thing I can do when I feel pain is to lay in a dark room with a heat pack, says Nevena.

With little known information on the causes, the Australian government is now funding an investigation into the causes of endometriosis.

Despite this new funding, many women suffering from the disease believe that finding a cure is imperative, “even bulk billing some of the treatment would be incredibly helpful”, says Nevena.

Given the level of pain some women experience when trying to identify the root of their problems, it is incredibly important that girls and women are not only educated but provided with the necessary help.