If you ever wanted a visceral description of just how painful the inflammatory condition endometriosis is, allow Radio New Zealand journalist Susie Ferguson to tell you. She's had almost three decades of practice after all, likely suffering from the disease since she was a teenager.
Pain, she has learned, is a very hard thing to articulate.
"I remember seeing lots of great doctors, who were enormously sympathetic. But you have no yardstick [to measure the pain]." Over the years, however, this changed and after giving birth to two children she finally did have that yardstick. So last July, when the pain had reached yet another crescendo, she told her gynaecologist the exact level of agony she was experiencing: the same as being approximately five to six centimetres dilated in childbirth.
"I know that, because I've had two children with just gas and air as pain relief… and because that's the point I start sweating in childbirth. And that's what's happening to me when I'm presenting Morning Report. If it gets to the point where the pain is bad enough that I'm sweating, I know that's the level I'm experiencing."
Even those who haven't had children probably realise that six centimetres dilated is not a state of body you want to be in while trying to interview the Prime Minister live on air at 7.30am. Or being a war reporter in Iraq. Or looking after your two small children, or going about your daily life.
It's not a level of pain you want to have hanging over you as a possible thunderclap, ready to strike, any time of any day, for almost three decades. And yet that was the life Susie, 40, had led since she was 13, and it's the reality that thousands of Kiwi women live with.
Endometriosis is a misunderstood, grossly under-represented horror show of a disease.
It affects one in 10 women around the world, often starting from their first period. It occurs when tissue similar to the lining of the uterus (known as endometrium) is found outside the uterus.
The tissue can form lesions, mostly in the pelvic region but it can sometimes be found in other places, like the lungs or diaphragm. It often goes undiagnosed for years – the only way to diagnose it correctly is via a laparoscopy, undertaken by a gynaecologist with advanced laparoscopic skills, to both identify the endometriosis and then remove it. The main symptom for most women is pain: brutal, constant, unpredictable pain. A childbirth level of pain for some.
The amount of people affected by it is believed to be similar to the amount affected by diabetes, yet it receives only a fraction of the awareness and funding. As a result, it is both poorly recognised and poorly treated. The solutions are either vague and hopeful – strong painkillers such as tramadol – or hideous-sounding, like having the endometriosis cut out of the body, or drastic, such as the operation Susie had at the tail end of 2017.
By any measure, Susie's career has been a spectacular one. Born in Scotland, she initially went into the drama and arts field before taking a pivot into journalism. Her broadcasting career has seen her work in her homeland, before moving to London to report for the likes of the BBC. After almost a decade as a radio journalist, including six years reporting from war zones, she and her husband Lee emigrated to New Zealand in 2009 and are now based in Wellington.
Throughout her working life, Susie's colleagues have always been both aware and understanding of her endometriosis. She is now one half of the presenting team behind the hugely popular Morning Report, and says her boss, Martin Gibson, has been "fantastic".
Case in point, when she realised that sitting at a desk was only making the pain worse – and googling "endometriosis + pain when sitting" confirmed her theory – there was a standing desk ready for her just 36 hours after she requested one.
The day before her major surgery in November, she decided to go public about her decades-long battle, reading out a short message live on air. The recovery time was set to be six weeks, and she didn't want to dance around the reason she wasn't going to be on air for so long. So she came up with a quick speech, typing it up so she could go by the script in case she became emotional, and talked about her upcoming surgery in a frank, open manner.
The response was immediate – "My phone wouldn't shut up," she laughs – and she was stopped often in public by people showing their support in the weeks that followed. "One woman came up and just put her hand on my hand and said, 'You're looking really well, that's really great,' and just walked off again… there was a lot of love out there, which was wonderful."
There were also a lot of women who could relate, she says. According to Endometriosis New Zealand, 120,000 Kiwi women suffer from the disease.
"It's amazing that there's this largely silent group of people who are affected by this every single day of their lives. I got a lot of messages saying, 'I had that, I had a hysterectomy 18 months ago and it was the best thing I've ever done.'"
She also heard a lot of stories from women who had – like her – experienced an even more devastating side to the disease. Women with endometriosis have a far higher chance of miscarriage, which is something Susie wasn't told at the time of her diagnosis.
"I had two miscarriages before I had a child that went full term, and I wish I would have known that, because I think it would have made it an easier process to go through. Since going public with my hysterectomy, I've heard stories from women who have had six, seven miscarriages and haven't had a child. And then to find out [endometriosis] is the reason why, it's heartbreaking."
Heartbreaking, absolutely. But also enraging. Endometriosis is a perfect storm of a disease: it's often misdiagnosed and mistreated, involves an intimate part of the body, and only affects females.
It took Susie four years of being in the UK medical system with suspected endometriosis to actually have it proven at the age of 29, when she was finally able to see a surgeon. That's a long time to wait, but it's still only half the average time it takes for sufferers to be correctly diagnosed.
By the time she was able to go in for the keyhole surgery, in order to confirm the likely diagnosis she'd been given years earlier, there was endometriosis on her bladder, bowel, fallopian tube… it was everywhere.
She was told it wasn't surprising she had been in so much pain given the extent of the disease – an admission she says she found vindicating, but the fact remains that she had been living on and off with a six centimetres dilated level of pain since she was 13 years old – and that major surgery remained one of her few options. The alternative would have meant continuing to live with the pain until menopause – "not really possible," Susie says.
As a teenager, she had terrible cramps and heavy bleeding, and was eventually put on the pill to control her periods.
"At the beginning, you don't know what the pain should be." As she got older, things stepped up a notch. The heavy bleeding would last for 10 days and at its peak, she was bleeding through a tampon and what were essentially maternity pads every 45 minutes. At 20, she was diagnosed with a large ovarian cyst, and the surgery from that took out both her left ovary and left fallopian tube. But the extreme pain continued, with a brief respite during her pregnancies.
"You'd try to explain this to the doctors and their eyes would glaze over and they'd say, 'We'll try putting you on a different pill, or we'll try you on different painkillers. Come back in four or six months and we'll have a look at you.' And this just went on and on.
"I don't think women's pain is taken seriously, I just don't," she says.
"And it's such a misunderstood disease – we really don't know anything about it. We don't know why some women get no symptoms whereas other women maybe don't have that many patches of endometriosis but they might be in excruciating pain. We don't know why some women experience fertility problems and some don't. These are all questions that the doctors shrug their shoulders about and you think, 'Would you know this little about something that could affect half the population if it was a condition men were experiencing?'"
After going public last November, Susie has become an ambassador for Endometriosis New Zealand – alongside TVNZ broadcaster Miriama Kamo – to help raise awareness and, particularly, to help the younger sufferers.
"You can identify as a young woman that you're experiencing a high level of pain, but it's how you articulate that, and how you get people to take it seriously that's the really, really hard bit," she says.
"It's important for everyone to be able to access services on how to deal with this, because apart from everything else, it's really expensive buying that many pads or tampons to deal with that amount of bleeding. And, like most gynaecological conditions, the earlier you get to it, the earlier you're in the system, the easier it is to treat it."
While her journey through the UK's National Health Service may have been slow – an overcrowded inner London hospital and a grossly overlooked disease does not make for a speedy process – Susie says her public system treatment in her adopted home of Wellington was "world class". But she wants to see more women coming forward about their endometriosis – and being taken seriously when they do.
"I don't think it can be shrugged off as 'women's troubles' any more. It's one of the reasons I was so open about having a hysterectomy, because actually it's really normal. I've met so many women – some of whom have been colleagues for years – who have had a hysterectomy for a different reason; it's sort of an underground of people. Why is it this hushed up area of life that we don't get to talk about? Every single person who ever walked on this earth has been inside a uterus – it's the one unifying experience we all have. And yet, we won't talk about them."
Her upbringing contributed to this no-nonsense attitude. She was born into a family who were extremely matter of fact about the "amazingness and mundaneness" of the human body.
Her father was a GP who specialised in family planning, her mother has a PhD in Anatomy and taught at Edinburgh university "cutting up bodies for a living," Susie laughs.
"I used to freak people out when I described what my parents did for a living. So I don't find it weird talking about any of this stuff – I find it fascinating."
Before she went into surgery, Susie didn't know what kind of operation she'd be undergoing: a laparoscopic hysterectomy or the total abdominal version, which is similar to a Caesarean. She is very grateful that she woke up to the "lesser" of the two: the laparoscopic version is four smaller incisions, rather than one large one, so her recovery has been better than expected.
"Your stomach muscles feel like they've been hijacked but after a couple of days, you kind of feel all right."
Having a hysterectomy, however, is not a total cure: Susie had her uterus, remaining fallopian tube and cervix removed, but has one ovary left, which can still cause trouble down the line. She's well aware of the reality that there may still be further surgeries ahead (although considerably less drastic ones). But as it stands now, she's eyeing up the possibility of a pain-free future for the first time since she was a teenager.
"To not have to think about the pain, or worry about the pain, to not have to think about what meds you've got in your handbag, are you covered for any eventuality that might pop up, whether you have to work with it or not… it's life-changing. I know that sounds like a dramatic thing to say, but it genuinely is. All of that side of my life has just fallen away, and I've had no endometriosis pain for several weeks now, which is brilliant. Like a new dawn."
- CompetitionsWin one of five prize packs from Arnott’s worth $100
Good Health ChoicesToday 8:00am
- CareerTech-savvy granny: Meet Val, a social media queen at 90
New Zealand Woman's WeeklyToday 8:00am
- RoyalsInside a play date with Prince George and Princess Charlotte at Kensington Palace
Now To LoveYesterday 3:40pm
- PetsThe online pet product delivery service that just made your life easier
Now To LoveYesterday 2:00pm
- RoyalsIs this a clue that Duchess Meghan is relaunching her lifestyle blog The Tig?
Now To LoveYesterday 11:15am
- CareerFrom Shortland Street to water births: Katherine McRae's new focus
New Zealand Woman's WeeklyYesterday 9:09am
- RoyalsNew book details the lives of the photographers who captured the royals behind closed doors
New Zealand Woman's WeeklyYesterday 9:00am
- FamilyNadene Lomu's tearful confession: Pushed to breaking point after Jonah's death
Woman's DayYesterday 7:45am
- EntertainmentWoman's Day Bonds X-Temp hottest media hunk has been crowned
Woman's DaySep 16, 2019