Sunday , October 17 2021

Endometriosis: The brutal disease that no one talks about

A Tauranga woman is asking for more understanding about endometriosis, saying she is often labeled a "drug seeker" when seeking medical help for her painful condition.

In an instigating Instagram video, Annalize Harte cries in pain as she talks about the frustrations of her condition, which causes extremely painful periods – often excruciating.

She says that despite the large number of women suffering from endo, as is commonly known, it is still a misunderstood disease.

"I, one hundred percent, believe there is still a problem with the recognition of endometriosis.

"People see this as being female and in particular a menstruation problem. From a very early age we are taught to keep our menstrual cycle quiet and silent.

"Reception at the school hands you caps and cushions on the balcony in an envelope. Boys are overwhelmed with the topic and girls are forced to believe that this is a subject that should not be discussed.

"Because endometriosis is a disease that affects your menstrual cycle, it's subconsciously associated with this" taboo "and no one feels comfortable talking 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 reveals the reality of suffering.

Because endometriosis is a disease that affects your menstrual cycle, it is subconsciously associated with this "taboo" and no one feels comfortable speaking out loud about it.


"The periods that last for weeks, months at a time, the inability to have a normal bowel movement, not being able to find a cushion that fits your flow." The embarrassment women feel when they have to argue with their employers why they need one more day off. .

I created the blog to clarify things that people think should be kept behind closed doors because they are not.

That's what so many women around the world 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 received my diagnosis, I had never heard of endometriosis before, did not feel like I could talk about what was really wrong with me or that someone else understood.

I do not want anyone else to have to feel this way, I hate to know that people feel lonely, misunderstood and defeated. "

Harte underwent a series of treatments, including the contraceptive pill, two laparoscopic surgeries, a Mirena inserted, acupuncture, women's health physiotherapy, pelvic floor treatment and medication courses.

The thought that she may not be able to have children is one of the hardest things to deal with daily, along with pain.

She says there is not enough understanding of the disease in the medical profession.

"Sometimes you are made to feel like you are doing your symptoms and are simply there to fuel a drug addiction."

Harte tries to manage his endo with a healthy diet, cutting dairy, gluten and sugar and doing exercises regularly.

Rachel Axis

Rachel Axis, photo by Shannon Armstrong
Rachel Axis, photo by Shannon Armstrong

Papamoa's mother and social work student Rachel Axis agree that there is little understanding of the pain of living with endo.

It's not just pain in the period, it's like having a miniature human inside you ripping your insides and tearing them apart, followed by being kicked up the birth canal to complete. "

She was even recently threatened online for posting about it, accused of being "a drama queen".

"It made me feel insecure about this and reaffirms that some people think it's some kind of joke. It only increases the misunderstanding of endometriosis in society."

She believes that many patients could find relief from medical marijuana.

"It scares me to talk about it because of reputation, but it's the only relief for the pain that allowed me to get out of bed, interact with my family and continue my day."

Although blessed to have a daughter, she and fellow singer Tiki Taane are trying to get pregnant and this year she has had a devastating abortion.

There are other challenging physical aspects of the disease, including cystic acne, a side effect of hormonal imbalance that, according to her, destroys her confidence to the point of isolating herself and avoiding social encounters.

Painful intercourse or bleeding during intercourse can be problematic for sufferers, and stomach bloating is another discomfort.

"Inconsistent weight gain and loss and the belly endo that makes me feel like a beached whale."

Consistent pain can cause chronic fatigue and mood swings.

Axis now manages its symptoms with diet, exercise and a "suck" attitude, and says that self-care is important. It urges other patients to talk about it and educate, whenever possible, to help remove the disagreement and even "shame" surrounding the disease.

Libby Whaley

Libby Whaley and her baby
Libby Whaley and her "miraculous" baby. Photo / Little Minx Photography

Mongolian Libby Whaley agrees that there is a taboo feeling about women's health and periods.

"Some people may feel dissatisfied or think it should remain confidential and not be discussed."

Whaley says she is comfortable sharing her condition with friends and family – as well as with clients at her hairstylist, Epsilon Hair, in which she uses products that do not contain parabens and certain other ingredients, as she says that parabens mimic estrogen in the body . and grow tissue endometriosis.

She also struggled to get a diagnosis, even when she was going to a fertility clinic and describing her symptoms, she says she felt "inconsiderate."

After suffering symptoms, including pains, irregular periods, blemishes and difficulties to get pregnant for more than three years, she was finally referred for diagnostic laparoscopy.

"By then he had been growing for at least three to four years and I was having problems. I had to find a specialist surgeon and I ended up losing a fallopian tube."

She underwent 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 her "miracle baby ".

During the time of her struggle for fertility, she and her husband moved from Auckland to Mt. in an attempt to reduce the stress level in their lives, and began to eat predominantly raw and organic foods.

She also tried a treatment called lipiodol flush, which releases the uterus and fallopian tubes with poppy seed oil and its successful course of in vitro fertilization was designed specifically for women with endometriosis.

As she is breastfeeding Indigo, her symptoms are in remission, since she has no periods, but she thinks more surgery is likely in the future.

Jennie Skulander

Jennie Skulander, lead singer of Devilskin, wrote a song about her endometriosis. Photo / file
Jennie Skulander, lead singer of Devilskin, wrote a song about her endometriosis. Photo / file

Devilskin vocalist Jennie Skulander gives a poignant vision of her personal struggle with endometriosis in the band's recent release, ENDO, images of a bloody high-heeled boot.

"ENDO is based on my surgery for Stage 4 Devilskin's song, ENDO, it's about the vocalist Jennie Skulander's fight with endometriosis.

The Devilskin Endo song is about endometriosis
The Devilskin Endo song is about endometriosis

The letter "Break the mass up" is about having a cyst of 11cm (Endometrioma) in my ovary removed. This disease affects so many women all over the world, I really think it's time to talk openly about it. "

Endometriosis New Zealand (ENZ) is the organization that represents those with endometriosis and pelvic pain in New Zealand.

ENZ provides school education, advocacy, advocacy, and research to stop suffering and influence change.

Deborah Bush, executive director of ENZ, said that more than 120,000 girls and women have endometriosis in New Zealand and may take more than eight years to get a diagnosis.

According to her, 27% of girls in New Zealand miss school every month, or almost all, with pain or distressing symptoms that can interfere with their daily lives and function. "It is important to recognize the symptoms early and to follow a recommended course of treatment to prevent symptoms from interfering with schooling, career, relationships, quality of life or downstream fertility."

What is endometriosis?
Endometriosis is a medical condition that occurs when a tissue similar to the lining of the uterus, called the endometrium, grows in other places outside the uterus, such as around the uterine tubes, ovaries, or along the pelvis.
Symptoms include pain with menstrual periods, bowel problems, painful sexual intercourse, subfertility or infertility, tiredness and low energy, pain in other places such as the lumbar region and abnormal menstrual bleeding.
Endometriosis is a common inflammatory disease that is estimated to affect 176 million girls and women worldwide in their reproductive years, and 120,000 in New Zealand. This means that approximately 1 in 10 women in New Zealand will have endometriosis.

Tips for living with endometriosis
– Eat healthy food. Gluten, dairy, red meat, caffeine and alcohol may be the worst enemies of the endo, so some patients have to avoid this most of the time.
– Exercise – what makes you feel good.
– Take time out to de-stress – be it meditation, walk on the beach or watch a funny movie, anything that makes you relax and feel good lowers the cortisol in our bodies, which prevents the symptoms are so intense.
– Go paraben free. Congratulations are on most beauty and body products such as shampoo, makeup, bodywash and soap, moisturizers … the list goes on.
– Use heat pockets, get enough sleep and practice self-esteem.
– Seek support, follow other suffering bloggers to know that you are not alone, and if you think your doctor did not "get it," then change doctors.
– Drink lots of water.
"Speak, be honest and educate those around you.
Sources: Annalize Harte, Rachel Axis, Libby Whaley

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