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This March we march for endometriosis

On 25 March 2017, women around the world living with a debilitating yet worryingly common disease, gather to raise awareness. Neos Kosmos shares a personal story.

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Neos Kosmos' English Editorial Director, Nelly Skoufatoglou was diagnosed with endometriosis 8 months ago.
Photo: Heidi Seraphim

Try to relax and not think about it. Would you consider seeing a psychologist? The symptoms you're describing aren't really making sense. I think you're being a bit dramatic.
24 March 2017

It was 20 August 2016, when I got diagnosed with endometriosis during my laparoscopy, after eight years of silent suffering and numerous misdiagnoses.

The number of general practitioners, specialists and surgeons I had visited in Greece eludes me while I can still list 12 different GPs and three specialists in Melbourne until I could get a proper referral and diagnosis at 34 years of age.

Those years were filled with pain, bleeding, exhaustion, anxiety, tests, hormones, antibiotics, frustration, failed relationship after failed relationship, and a secret fear of losing my sanity. The pain, the spotting, the hormonal treatments, the emotional distress and exhaustion are still here, a constant, but at least I know I'm sane and I know I'm not alone.

The fact that I am not alone in this, that one in ten women – at least – is in the same boat frustrates me even more.

Endometriosis is not the kind of condition I wish upon anyone; however, more than 200,000 women across Victoria alone are suffering from this, a common disease in which tissue that is similar to uterine tissue, invades places it shouldn't causing inflammation that the body naturally needs to fight; causing pain, causing scaring.

Endometriosis affects women in their reproductive years – anywhere from 15 to 50 years of age – and causes pain and infertility. Genetics play a really important role according to research as in the same family unit it is common for the mother to have had it, the sisters, aunts, or cousins to suffer, too. This phenomenon is often responsible for the normalisation of endo pain.

Whilst endometriosis most often affects the reproductive organs, it is frequently found in the bowel and bladder, in muscle, joints, the lungs, and the brain - not to mention it causes several neurological symptoms.

In an Australian Government report, endometriosis is said to cost society $7.7 billion annually with two thirds of these expenses attributed to loss in productivity with the remainder, approximately $2.5 billion being direct healthcare costs. In Europe, endometriosis is recognised as being on a par with diabetes as it is far more common than breast or cervical cancer. It is worth mentioning that over 40 per cent of the women in infertile couples have endometriosis. The correlation of the disease with infertility, especially in ethnic communities bears a heavy stigma. Many women might not report symptoms like breakthrough bleeding or spotting for fear they might be seen as "unclean" and disgusting, for fear no man would want to be with them knowing the complications this disease might have.

Before my diagnosis, I had been 'advised' more times than I can recall to stop talking about my "business" by quite a few Greek women in my family.

"That's what happens. Being a woman is not a walk in the park. Some women have pain, others don't. I've seen worse. Now stop talking about it all the time. Word will get out."

Even some male friends were quick to suggest I don't mention the reason keeping me in the house, and pretend I have other plans instead of explaining my condition to my boyfriend.

"Men don't want or need to hear about that shit. He'll lose interest."

What makes such a common disease so hard to diagnose?

Low awareness is not prevalent only amongst patients themselves and the general public, but mainly at the level of general practitioners and health professionals while lack of funding is also attributed to poor awareness. There is a reason endometriosis is called the invisible disease, the invisible threat, as nothing is easier than to dismiss something so hard to identify. With laparoscopic surgery being the ONLY way available to this day to diagnose and treat – not cure – endometriosis, many of the symptoms can be brushed off, which is why so many women get misdiagnosed, or have such a delay in diagnosis. There is not a blood test or a scan yet that can help determine its presence.

Health professionals might have discounted or normalised their patients' symptoms at the start, with pain being the only 'measure', an indication that is completely subjective, given that threshold and neurological perception of pain differs per individual. Some women might have irregular constellation symptoms and are not presenting with the "classic period pain" that accompanies endo, but they are highly unlikely not to experience pain between their periods, during intercourse, bowel movements and when they empty their bladder. Fatigue and fainting are also common.

Unfortunately, most general practitioners and non-specialists have not been trained to identify the symptoms and are not aware of the many impacts of the disease. Women get fobbed off as even doctors consider period pain normal, while in fact it is completely unnatural, an indication of underlying issues.
It was after I relocated to Melbourne that my symptoms kicked in for good and it took more than two years of complaining to doctors for someone to realise it was not just my imagination. Eleven out of twelve general practitioners would put me on heavy antibiotics for a urinary infection even without the presence of bacteria and give me hormones to regulate my bleeding.

"Everything looks fine, Nelly. Your reproductive system is in perfect condition. Those cysts that come and go... that's normal!"

"Try to relax and not think about it. Would you consider seeing a psychologist? The symptoms you're describing aren't really making sense. I think you're being a bit dramatic."

Right. Now tell that to my long-gone fallopian tubes and the rest of the organs affected by a stage five-pushing-six endo. Thank you.

This is why endometriosis specialists around the world urge patients to be the ones presenting their doctors with the possibility of having endometriosis to assist them to consider it, as early referral, diagnosis and treatment are critical in managing the pain and limiting the impact on women's fertility, mental health, career, and overall quality of life.

Meanwhile, ovarian endometriosis is often treated as poly-cystic ovarian syndrome (PCOS) while pelvic ultrasounds don't do those women justice as they have been structured into a specific routine followed by the imaging specialists. If they don't take that extra step to actually look for endo with a thorough trans-vaginal ultrasound, they probably won't find red flags pointing to something other than "the usual". As endo is mobile, it tends to hide between and behind organs creating scar tissue that affects mobility. Women with severe endometriosis lose their organ mobility. Unless a doctor is aware of those changes the minor clues that could get the patient a referral are offed. Younger women are even harder to diagnose, especially when they are not sexually active; at the same time the disease has been confirmed and diagnosed in children as young as eight years old, even before they hit puberty - especially when it runs in their family.

A couple of months back I would console myself with the thought that I've hit 35 years of age and even though I can't have children naturally (that's the case for me, not for every woman with the disease), I have less years of endo pain ahead than a 20- or 15-year-old getting diagnosed. Some people have suggested I get pregnant with IVF so I can get magically "cured". Another myth. Pregnancies will suppress the symptoms and if there's no miscarriage, the disease will reappear approximately 12 months after. If a woman with severe endo escapes the risk of antepartum haemorrhage, pre-term birth, pre-eclampsia, it could still result in stillbirth or in bringing a child with disability and health issues into the world.

Furthermore, recurrence of endometriosis even with the most optimal surgical treatment - which has to be excisional (cutting out the tissue completely) rather than ablative (use of laser and heat to treat the affected tissue) - is within the range of 50 per cent. Sometimes a decision is made to leave some of the disease behind – particularly when it's in the back of the uterus, close to the ovary or around the cervix because to remove it would mean removing these organs. Hysterectomy might form part of a woman's treatment in severe cases - yes, I've though about that, too - but that is also relevant and there have been women post-hysterectomy, experiencing the same or worse symptoms, with the disease moving on to different organs, i.e. the bladder and bowels.

So what do we do? How do we cope with the pain and everything else that comes with it?

In the area of medicines we can use nerve modifying medications to change the way pain is perceived, in combination with anti-inflammatory medications and painkillers. Hormonal treatments, the oral contraceptive pill being the most common, as well as an IUD might help - again, some women - with minimising the pain. Induced menopause is also an option. Acupuncture and natural therapies have been incredibly effective; studies around the world are showing positive results in allowing women to feel better, but that will last for as long as the disease allows it to last...

For me, it was less than a year. Fast forward eight months post-operation most of my symptoms are back.

I recently had to ask for medical help to deal with "a new kind of pain" in my right ovary and heavy spotting. When I told the staff I was an endometriosis patient, I instantly stopped being a priority. When hours later a nurse remembered I was still waiting, she asked me if I was sure I had endometriosis and what I meant by "I have been diagnosed". Then she suggested I get an ultrasound (in three weeks time) and "if that's the case, maybe cope with it like you normally do? It's quite common".

There I was again, wondering what has changed- what has really changed- since I got diagnosed other than the fact that no one can send me home off the "I-think-we're-being-a-bit-dramatic" bat? 

Unless I wait for a specialist's appointment which could take weeks, months even, I get brushed off on a slightly different note: "our hands are tied"!

That's a bit dramatic now, innit.

*Instead of doubting a woman who insists there is something wrong with her, open a dialogue, believe her and tell her that she can get help even after a diagnosis to improve her quality of life; that she doesn't just have to live with it.

If you or someone you know suffers from similar symptoms you can contact Endometriosis Australia and Endoactive Australia at www.endometriosisaustralia.org and endoactive.org.au respectively.

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