Endo treated like ‘taboo’
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,
Some people can feel grossed out hearing about it or think it should stay private and not be talked about.
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