Endometriosis: Advocates shed light on crippling condition for women worldwide

IT hits one in 10 women, can take years to diagnose, and costs billions. Now SA experts say doctors need to be more aware of endometriosis.

MEL Greig is battling the clock. Most women know their chances of having a baby decrease from their mid-30s, but the former radio host’s fertility window is closing faster because of a debilitating disease. Plagued by crippling pain every month, Greig faces the prospect of losing one of her ovaries when she next undergoes surgery to keep the condition at bay.

“I had a bit of a cry when I was told I wasn’t going to be able to get pregnant naturally, but if I want kids I just have to put everything aside and say this needs to be my focus now,” the 33-year-old says.

Greig has been diagnosed with endometriosis, a painful gynaecological condition that affects one in 10 Australian women and, at its worst, can rob them of the chance to have children.

Awareness of the disease among medical professionals is low, leaving sufferers to wait an average eight years for a correct diagnosis. This is often because the condition is mistaken for digestive or other complaints, or because women downplay symptoms as “normal” period pain.

There is no cure or simple detection test, but Adelaide scientists are among those pioneering research and a new targeted painkiller has been released on the Australian market after a social-media campaign. In the meantime, advocates want to raise awareness in the hope that earlier diagnosis can help women avoid developing chronic pain and give them more time to plan their fertility.

Greig was 16 when the first signs of endometriosis appeared but she wasn’t properly diagnosed until 23.

“At 16 I started to have really bad period pain. You just think it’s normal … but period pain should not be excruciating,” she says. “As I got older and I was sexually active I would have intense pain, which is a side-effect of the endometriosis.

“Going to the toilet was so painful. Then it got to the point where I couldn’t walk for one day a month during my cycle. When I first went to the doctor they brushed it off. People just don’t know what it is.

“I didn’t even know how to say it for the first three years.”

Endometriosis causes the type of cells that line a woman’s uterus to grow as lesions in other areas of her body, usually within the pelvis and sometimes on other organs. This causes inflammation, pain and scar tissue.

In severe cases it can develop into adhesions that can stick other organs together. At worst, endometriosis – or endo, as it’s often called – can cause infertility through damage to reproductive organs such as the ovaries.

What causes endometriosis to develop in some women and not in others is still a mystery. Symptoms are unpredictable and variable, and there is no clear relationship between the extent of the lesions and the level of pain a sufferer experiences.

While diagnosis can be made based on symptoms, these can vary greatly between women. A definitive diagnosis is made through invasive laparoscopic surgery, during which lesions are lasered or cut out.

The disease often runs in families and can begin in a girl’s early teenage years.

Experts estimate endometriosis costs Australian society about $7.7 billion a year – $5.2 billion of it stemming from lost productivity and about $2.5 billion from direct healthcare costs.

Australian research presented at the 2014 World Congress on Endometriosis stated “available data strongly suggests that endometriosis adds a significant, silent burden to the nation’s budget”.

Adelaide research has found sufferers also endure disrupted sleep, digestive complaints, anxiety or depression, which causes them to opt out of education, employment, sporting or social events or intimate time with partners.

“Some people will bleed for weeks on end, or have nausea or constant bloating,” Greig says. “It’s different for everyone. For a lot of girls with endo, it’s not explained properly to them, so we really do need to see the specialists.”

Greig, who is now an ambassador for Endometriosis Australia, is among a growing number of high-profile women speaking out about having the condition.

They are reported to include former US secretary of state Hillary Clinton, actresses Whoopi Goldberg and Pamela Anderson, US Biggest Loser personal trainer Jillian Michaels and Queensland premier Annastacia Palaszczuk.

Now in her mid-40s, the nation’s second-elected female premier has had two operations for the condition, but lost an 11-week pregnancy at the age of 34.

She has spoken candidly about the toll of the disease, saying her greatest regret was not being a mother. “I wish with all my heart I had children … I think I would have been a good mum,” she told Brisbane’s The Courier-Mail last year.

Across the globe, advocates are using Endometriosis Awareness Month during March to shed light on the impact of the condition and push for advancements in detection and treatment. Current approaches combine painkillers and anti-inflammatory drugs with hormonal treatments, such as the contraceptive pill or Mirena implant, to regulate ovulation and limit the growth of lesions.

While laparoscopic surgery is required to remove lesions, it is elective and not all doctors recommend it. Some women need multiple operations over a lifetime, while for others the lesions never grow back.

Greig’s painful symptoms were largely kept at bay by taking the oral contraceptive pill, but this did not stop the lesions from “growing tenfold inside, wreaking havoc”.

By the time she went under the knife, her surgeon faced a six-hour procedure to part her bowel and ovary, which had been stuck together by endometrial adhesions. The surgery left her organs so battered she has been told she may lose the ovary, and a fallopian tube, when she has to undergo her next operation.

Endometriosis sufferers are often diagnosed with related complaints, ranging from bowel or bladder sensitivity, pelvic muscle spasms or nerve pain.

South Australian psychologist Tiffany Brooks says sufferers can spend thousands of dollars on hospital visits, appointments with GPs, naturopaths, gynaecologists, physiotherapists and chiropractors, and on medications trying to relieve their pain.

“It took me 15 years to accumulate the services and answers I needed to manage my pelvic pain well,” Brooks says. “My experience was a constant struggle to be believed, get a diagnosis and even get in the door for specialist treatment.

“There is also the emotional cost – guilt, being a burden to family, severe low mood and worrying about the future.”

Diseases such as endometriosis are “not high on the list of priorities” for health services in Australia, laments SA-based gynaecologist, surgeon and pain specialist Dr Susan Evans.

In a bid to change that, and ensure doctors pick up on the signs early, Evans and others recently launched the Pelvic Pain Foundation at the SA Health and Medical Research Institute.

It aims to foster research and awareness through fundraising, school education programs, seminars for medical professionals and making information available online.

A member of the foundation’s board, Evans says South Australian scientists are spearheading a growing body of research. For example, work is being done here on learning more about how sufferers feel pain and what types of new drugs could be developed to better target pain pathways.

“In the past it has been surgery or hormonal treatments, but that’s not going so well for people,” Evans says. “When pain lasts for a long time, the pain pathways can change and that sets up a pattern of persistent pelvic pain.”

Recognising that symptoms often start early in life, Evans is keen to make progress in helping young women and girls address the condition as early as possible.

Later this year, the Pelvic Pain Foundation will join with sexual health organisation SHINE to hold a seminar for school nurses so they can better help young endo sufferers.

“Its very difficult growing up with pain, especially when it’s a pain that you can’t see,” Evans says. “The time off school is really difficult.”

Evans is also supervising research by UniSA PhD candidate and physiotherapist Jane Chalmers about the impact of pelvic pain, including endometriosis, on women’s quality of life.

Early indications from more than 1000 responses to an online questionnaire suggest it is significant.

Respondents have reported that endometriosis somewhat or largely affects their energy levels (77.3 per cent), mood (70.8 per cent), digestive function (68.6 per cent), sexual intimacy and relationships (64.7 per cent), physical activity levels (64.3 per cent), ability to function at home, work or school (60.7 per cent), what clothing they wear (56.3 per cent) and sleep patterns (56 per cent).

Chalmers’ aim is for doctors and patients to use the questionnaire to monitor symptoms over time and track the effectiveness of treatments.

Advocates also want policy changes to help endometriosis sufferers remain engaged in the workforce.

Greig says governments should consider adding entitlements for extra sick days for women diagnosed with the condition.

“Some of these women cannot live a normal life. It’s affecting them mentally, they feel symptoms every day,” she says.

“Just because it isn’t visible (to others) doesn’t mean the pain isn’t there.

“You end up using all your sick days and you lie about (the reason) … because you don’t feel people will understand.”

Making men aware of the disease and its impacts is crucial too, Greig says.

For many women, endometriosis can make sex painful and sufferers find partners are not always understanding.

“With sex, a lot of girls just bear it (pain), especially if you’ve just started seeing someone,” Greig says.

“I remember an ex-boyfriend saying ‘You’re not special, every female has period pain; just deal with it’.

“A guy said to my friend once ‘Is this an STD? Can I catch it?’ That’s why men need to be more aware and understand. No doubt they’ll have a mother, a sister, a girlfriend, who has it in their life.”

Greig’s husband, ex-footballer Steven Pollock, “didn’t understand” at first but seeing her go through her first surgery in 2012 brought it home. Now the couple are preparing for her third surgery to remove lesions, plus procedures to extract and implant eggs to try IVF.

“My next surgery is not going to be good. The doctor thinks I’ll lose an ovary and a fallopian tube,” Greig says. “You go through anger. You think, ‘What about having kids?’ But we’re going to give it a go and hope for the best. Hopefully I’ll be pregnant by the end of the year. That would give other endo sufferers hope that it can happen.

“I love hearing those (successful) stories when people have been told they’re not going to get pregnant and they do, and they have beautiful, healthy children.” ●

 

 

What is endometriosis?

Endometriosis is a gynaecological condition which affects about
one in 10 women.

The conditioncauses cells lining the uterus to grow in other areas of the body, usually within the pelvis.

This causes inflammation, pain and scar tissue and, in severe cases, can develop into adhesions which can stick organs together within the abdomen.

It can also affect fertility.

What are the symptoms?

Common symptoms include painful periods, bloating, leg pain, pain during or after sex or going to the toilet, lethargy or extreme tiredness.

The extent of endometrial lesions is not directly related to the level of pain — some women may have very few lesions but a great deal of pain, or vice versa.

Endometriosis is one of many triggers for broader pelvic pain and sufferers often have related problems such as digestive complaints or muscle spasms.

How is it diagnosed?

On average it takes eight years for endometriosis to be diagnosed, as it is mistaken for other conditions or treated as “normal” period pain. There is no blood test or scan, such as an ultrasound, to detect endometriosis.

It can be confirmedthrough a laparoscopy, where a surgeon inserts a tiny camera into the abdomen to search for endometrial lesions.

How is it treated?

There is no cure. Hormonal drugs, surgery to remove lesions and complementary therapies can help relieve pain, preserve or restore fertility and prevent or delay recurrence of the disease. Adelaide researchers are investigating how new types of drugs could address pain pathways which are aggravated by the disease.

For more information visit

www.pelvicpain.org.au

www.endometriosisaustralia.org

www.drsusanevans.com.au

www.endomarchaustralia.com.au

Upcoming events on March 28

Annual EndoMarch, taking place in dozens of cities around the world

High Tea at the Hotel Richmond, 128 Rundle Mall, Adelaide, from 10am to 12.30pm