A Tauranga woman is calling for more understanding of endometriosis, saying she is often labelled a "drugseeker" when seeking medical help for her painful condition.
In a heartbreaking Instagram video, Annalise Harte weeps in pain as she talks about the frustrations of her condition which causes extremely painful — often excruciating — periods.
She says despite the large number of women suffering from endo, as it is commonly known, it is still a misunderstood disease.
"I, one hundred per cent, believe there is still a problem with the recognition of endometriosis.
"People see it as being female-related and in particular, a menstruation problem. From a very young age we are taught to keep our menstrual cycle quiet and on the hush.
"The reception at school hand you tampons and pads over the counter in an envelope. Boys are grossed out by the topic and girls are forced into believing that this is a topic that should not be discussed.
"Because endometriosis is a disease that affects your menstrual cycle, it is subconsciously paired with this 'taboo' and no one feels comfortable speaking out loud about it."
Harte, who was diagnosed with endometriosis five years ago, runs a blog, All About Annie, to raise awareness about the condition in which she lays bare the reality of suffering.
Because endometriosis is a disease that affects your menstrual cycle, it is subconsciously paired with this 'taboo' and no one feels comfortable speaking out loud about it.
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"The periods that last weeks, months on end. The inability to have a normal bowel movement. Not being able to find a pad that will accommodate your flow. The embarrassment women feel when having to discuss with their employers why they need another day off.
I created the blog to shed light on the things that people think are meant to be kept behind closed doors, because they are not.
This is what so many women worldwide have to deal with and I want them to feel normal! One of the worst parts of this disease is feeling like an outcast. When I first got my diagnosis I had never heard of endometriosis before, I didn't feel as though I could talk about what was actually wrong with me or that anyone else understood.
I don't want anyone else to have to feel like that, I hate knowing people feel alone, misunderstood and defeated."
Harte has undergone a number of treatments including the contraceptive pill, two laparoscopic surgeries, a Mirena inserted, acupuncture, women's health physio, pelvic floor treatment and courses of medication.
The thought that she may not be able to have children is one of the most challenging things to deal with daily, along with the pain.
She says there is not enough understanding of the disease in the medical profession.
"At times you are made to feel as though you are making up your symptoms and are simply there to feed a drug habit."
Harte tries to manage her endo with healthy eating, cutting out dairy, gluten and sugar and taking regular exercise.
Papamoa mum and social work student Rachel Axis agrees there is little understanding about the pain of living with endo.
"This disease is not a joke! It's real and it's f***ing painful. And f*** anyone who tell you otherwise. It is not just period pain, it is like having a miniature human inside you tearing at your insides and ripping them apart, followed by being kicked up the birth canal to top it off."
She was even recently bullied online for posting about it, accused of being "a drama queen".
"It has made me feel insecure about it and reaffirms that some people think it's some sort of joke. Which just adds to the misunderstanding of endometriosis in society."
She believes many sufferers could potentially find relief in medical marijuana.
"It frightens me to speak out about this due to reputation, but it hands down is the only pain relief that has enabled me to get out of bed, interact with my family and carry on with my day."
Although blessed to have one daughter, she and partner singer Tiki Taane are trying for a child and this year she suffered a devastating miscarriage.
There are other challenging physical aspects of the disease including cystic acne, a side effect of hormonal imbalance which she says destroys her confidence to the point where she isolates herself and avoids social gatherings.
Painful intercourse or bleeding during intercourse can be troublesome for sufferers, and stomach bloating is another discomfort.
"Inconsistent weight gain and loss and the 'endo belly' which makes me feel like a beached whale."
Consistent pain can cause chronic fatigue and mood swings.
Axis now manages her symptoms with diet, exercise and a "suck it up" attitude, and says self care is important. She urges other sufferers to talk about it, and educate where possible to help remove the misundertanding and even "shame" around the disease.
Mount mum Libby Whaley agrees there is a feeling of taboo about women's health and periods.
"Some people can feel grossed out hearing about it or think it should stay private and not be talked about."
Whaley says she is comfortable sharing her condition with friends and family — as well as clients at the hair salon she owns, Epsilon Hair, in which she uses products that do not contain parabens and certain other ingredients as she says parabens mimic oestrogen in the body and grow endometriosis tissue.
She too struggled to get a diagnosis, even when she was going to a fertility clinic and describing her symptoms she says she felt "brushed off".
After suffering symptoms including pain, irregular periods, spotting and struggling to conceive for more than three years, she was finally referred for a diagnostic laproscopy.
"By this time it had been growing for at least 3-4 years and I was riddled. I had to see a specialist surgeon and ended up losing a fallopian tube."
She endured a second laproscopy, two months of IUI with clomiphene, three rounds of IVF with six embryo transfers — she finally conceived and earlier this year in August gave birth to her daughter Indigo, who they call their "miracle baby".
During the time of her fertility struggle she and her husband moved from Auckland to the Mount in an attempt to reduce the level of stress in their life, and started eating predominantly raw and organic food.
She also tried a treatment called a lipiodol flush which flushes the uterus and fallopian tubes with poppy seed oil and her successful course of IVF was specifically designed for women with endometriosis.
As she is breastfeeding Indigo, her symptoms are in remission given she has no periods but she thinks more surgery is likely in the future.
Lead singer of rock band Devilskin, Jennie Skulander, gives a poignant insight into her personal struggle with endometriosis in the band's recent release, ENDO, imagery of a bloodied high heel boot.
"ENDO is based on my surgery for Stage 4 Devilskin's song, ENDO, is about vocalist Jennie Skulander's struggle with endometriosis.
The lyric "Break the mass up" is about having an 11cm cyst (Endometrioma) on my ovary removed. This disease affects so many women worldwide, I really think it's time we talked openly about it."
Endometriosis New Zealand (ENZ) is the organisation representing those with endometriosis and pelvic pain in New Zealand.
ENZ provides education in schools, advocacy, support and research to stop the suffering and influence change.
Deborah Bush, chief executive of ENZ, said more than 120,000 girls and women have endometriosis in New Zealand and it can take more than eight years to get a diagnosis.
She said 27 per cent of girls in New Zealand miss school every or most months with distressing pain or symptoms that can interfere with your life and every-day function. "It is important to recognise the symptoms early and follow a recommended treatment plan to avoid symptoms interfering with schooling, career, relationships, quality of life or fertility downstream."
What is endometriosis?
Endometriosis is a medical condition that occurs when tissue similar to the lining of the uterus, called the endometrium, grows in other places outside of the uterus, such as around the fallopian tubes, ovaries or along the pelvis.
Symptoms include pain with periods, bowel problems, painful intercourse, sub-fertility or infertility, tiredness and low energy, pain in other places such as the lower back, and abnormal menstrual bleeding.
Endometriosis is a common inflammatory disease estimated to affect 176 million girls and women worldwide in their reproductive years, and 120,000 in New Zealand. This means that roughly 1 in 10 women in New Zealand will have endometriosis.
Top tips for living with endometriosis
— Eat healthy food. Gluten, dairy, red meat, caffeine and alcohol can be endo's worst enemies, so some sufferers have to avoid these most of the time.
— Exercise — whatever makes you feel good.
— Take time out to destress — whether it is meditation, walking along the beach or watching a funny movie, anything that makes you relax and feel good decreases the cortisol in our bodies, which stops the symptoms being so intense.
— Go paraben-free. Parabens are in most beauty and body products such as shampoo, makeup, soap and bodywash, moisturisers ... the list goes on.
— Use heat packs, get enough sleep and practise self love.
— Reach out for support, follow other bloggers who suffer to know you are not alone, and if you feel that your doctor doesn't "get it" then change doctors.
— Drink lots of water.
— Speak out, be honest and educate those around you.
Sources: Annalise Harte, Rachel Axis, Libby Whaley