• Women with endometriosis are living with a chronic, inflammatory disease that can have detrimental effects on their reproductive organs. (Flickr)
Endometriosis is experienced by 10 per cent of women worldwide, which means someone in your life is likely to have it. Here is what it’s like to live with this condition and how to support those who do.
By
Kate Young

4 Mar 2016 - 11:57 AM  UPDATED 4 Mar 2016 - 3:24 PM

Imagine living with pain that can strike at any time. Sometimes it will come with your period and you will have to take days off work. Sometimes it will be when you’re having sex or even when you go to the bathroom. That’s endometriosis.   

The disease occurs when tissue that looks like the lining of the uterus appear outside of the uterus.  Lots of women have this tissue happily floating around their abdomen but for women with endometriosis it can implant onto organs such as the ovaries, bowel and bladder. This causes them lots of pain and also damage to their organs. There is no cure.

Thanks to celebrities like Lena Dunham sharing their experience and activists such as the Australian mother and daughter power duo Lesley and Syl Freedman, awareness is gradually increasing. But we still have a long way to go before all women receive high-quality health care and social support, both of which are currently lacking.

As a researcher currently working on endometriosis, I have learnt a lot from the women who live with this condition. Here are some things they want you to know.

Period pain can be “as bad as a heart attack.” So why aren’t we researching how to treat it?
Periods are a fact of life but too many people are suffering in silent agony to be squeamish about the subject, argues Olivia Goldhill.

1. Endometriosis is a disease, so the fact that other women have painful periods and can still ‘get on with things’ means nothing to me.

If you are tempted to write a woman with endometriosis off as being a ‘drama queen’ for not being able to withstand painful periods like other women do, think again. They are living with a chronic, inflammatory disease that can have detrimental effects on their reproductive organs. A painful period is but one potential symptom of endometriosis. Others include bowel and bladder problems, painful sexual intercourse, heavy menstrual bleeding, and leg pain.

2. When you are in a relationship with me, we might need to have potentially awkward discussions about the future before either of us would have liked. 

You’ve just started dating someone and you have endometriosis. When do you tell them that you have a chronic condition that is associated with infertility, can reduce your financial independence, and involve a lifetime of trialling various treatments?

Women with endometriosis benefit from partners who can support them emotionally, physically and sometimes financially. They need to be able to have honest conversations about having children so they can plan their treatment (some of which can reduce fertility such as surgical removal of disease on affected reproductive organs) and their lives. Most adults in a relationship have such discussions at some point and sometimes the needs of one or both partners dictate that they happen sooner. If you’re on the receiving end, be honest and engage in the conversation like a respectful human being.

3. I can’t afford to go out to dinner/see a movie/go on a holiday with you because I have endometriosis and it is EXPENSIVE.

Women living with endometriosis face considerable financial burden. First there is the health care side of things. This includes numerous visits to their GP and gynaecologist, and sometimes other health professionals such as physiotherapists, psychologists and acupuncturists. Endometriosis diagnosis requires expensive laparoscopic surgery, and treatments can include additional surgeries and the use of hormonal therapies and pain relief medication. Women with endometriosis are also more likely to have added conditions such as migraine, ovarian cancer and melanoma contributing further health care costs.

The positive flow of period leave
Let it flow, let if flow. A British company has taken the bold step of introducing period leave for its staff, starting a conversation around periods and the workplace.

Then there are the costs from loss of income. Unpaid leave may need to be taken to manage the symptoms of endometriosis or recover from surgery. Symptoms may dictate the need to work in a part-time capacity or to take lower paid jobs with more flexible working conditions. Delays in secondary and tertiary education along with career disruptions can result in women being less able to progress in their career at the expected or desired rate. All of these factors can lead to women with endometriosis having less superannuation to support them in their retirement. Perhaps think twice about your choice of social activities if you know someone is dealing with these complexities.

4. Yes, living with endometriosis can suck but don’t assume that I’m a helpless sufferer.

Women with endometriosis are constantly described as being ‘endometriosis sufferers’ in the media. Living with endometriosis can be challenging and difficult for many women, but this doesn’t mean they are helpless or incapable. Around the world, these women are making valuable contributions to society. Examples in Australia include Queensland Premier, Annastacia Palaszczuk, and actress, Ada Nicodemou, who have each forged successful careers in their respected fields despite the trials and tribulations of endometriosis. Imagine what women could further accomplish with appropriate health care and adequate social support?

We need to listen to women living with endometriosis about what they need to create an environment that supports them. And this is something that we can all do whether you are a researcher, health professional, friend, partner, relative or colleague.

Kate Young is a PhD candidate in the School of Public Health and Preventive Medicine, Monash Universit .You can follow her on Twitter at @Researcher_Kate.

Image courtesy of Flickr/Martin.

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