12 Oct 2015

‘Imagine a glass bottle breaking inside you’

10:17 am on 12 October 2015

Endometriosis isn’t just “women’s troubles”. It’s a disease that can cause many to suffer through a life of debilitating pain.

At least 120,000 women in New Zealand battle the condition, but it isn't always spoken openly about. Here are seven Kiwis speaking about their life with the pain of endometriosis. 

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Interests: I like to learn new things and explore. I finished my masters in Bioethics at Columbia, NYC.

Diagnosis: Suggested at 14 years old, and 7 years later, had first diagnostic surgery at a cost of $20k

Symptoms: Painful menstrual, heavy bleeding, cysts, painful sex

“Imagine a glass bottle breaking inside your vagina and uterus. For the guys reading this, I guess it might be similar to being hit in the balls with broken glass. Then imagine someone taking those broken shards and scraping them all throughout the inside of your pelvic cavity, lower back and down the inside of your legs.”

“Countless medical professionals told me that this pain was normal, that it was in my head, that it wasn't actually as bad as I was making it out to be. I almost stopped looking for help with encountering these attitudes.”

“I passed out a lot in high school when I got my period. It was just such a lot of blood to be losing.”

“I personally think we don't talk about endo publicly because of an archaic patriarchal society that reinforces that women do not know our own bodies, and that doctors know best. Women are sometimes seen as hysterical delusional, crazy; anything other than in-tune with our own bodies.”

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Interests: My primary interest at the moment is my son, and we spend a lot of time playing together, singing, painting, exploring and napping whenever we can.

Diagnosis: Suggestion of endometriosis during early twenties, but wasn't given a firm diagnosis until exploratory surgery at 28.

Symptoms: Severe period pain, problems with fertility  

“Once my husband and I started trying for children, we discovered that infertility was an issue. This was in actuality more painful than the physical manifestation of the disease, and it wasn't until 6 months after the endometriosis was surgically removed that we finally got pregnant.”

“I would have pain in my stomach, my legs and my feet.  It was always the worst on the first day of my period, and I would often be incapable of doing anything other than sleeping in bed.  At times the pain was so intense that I would have to just lie down wherever I happened to be - kitchen floor, bathroom floor.”

“The hardest part for me was not being able to conceive for 4 years.  I am now pregnant with my second child, and haven't thought about endometriosis in a few years.”

“I am actually really grateful that my endometriosis isn't as severe as I know some people have it.  I have a family member who has had multiple surgeries for endometriosis, and still has ongoing issues.  I am thankful that I have been able to have children, and find joy in that every day.”

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Interests: I love to knit. I am one of the coordinators for the Endometriosis NZ support group and I love doing stuff for that.

Diagnosis: Two years ago. I was really confused because I had never heard of it so I just felt really lost and scared.

Symptoms: Bad pelvic pain, bloating, bladder issues

“For me, the hardest part of Endo is how much it has affected my ability to be a ‘normal’ teenager. I ended up dropping out of school halfway through year 13 because I was missing more school than I was attending.”

“Now, I still miss a lot of work because of my endo so I probably come across as unreliable at times and I always feel guilty if I think I’m letting the team down.”

“It’s affecting girls and woman in so many aspects of their life, so I don’t think we can ignore it anymore. It’s time to fight for education, research and support because we can’t just pretend it’s not there, it’s an issue that’s far too big.”

“I can’t thank my friends and family enough for their unconditional love and support. They have proven time after time that they are always there for me and will always help wherever possible.”

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Interests: Dancing is the love of my life so it's pretty all consuming, but I play a lot of music and do a bit of stand-up comedy here and there.

Diagnosis: Pain since 12 years of age, conclusive diagnosis at 25

Symptoms: Daily chronic pain, digestive problems, fatigue

“I've had it since I was 12 or 13, but no one treated horrendous debilitating pain as an abnormal thing for a teenager  so I just dealt with it for a decade before I first went to hospital when I was 23 because I thought I was dying.”

“At its worst I am unable to eat, sleep or function in any way; foetal position shaking on the floor, for hours/days/weeks.”

“The hardest part was coming to terms with and constantly explaining that I'm not “better yet” and don't expect to be. There was a grieving process for myself when I found out it was something that couldn't be ‘fixed’.”

“Anything to do with the female reproductive system is so taboo. I never used to talk about endo. I talk about it all the time now. I blog about it, talk on Facebook about it, make a lot of jokes about it, tell people as they become my friends. It's a pretty obvious part of my life if you're in it so I'm not going to pretend it doesn't exist.”

“I have a pretty stubborn ‘f&^k you’ attitude toward it now. I dress how I want to dress, I have the tattoos I want, I do what I want to do as much as I can do it – I explained it to my mum as ‘I have to live here, so if the place is crap at least I'll decorate it how I like’.”

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Interests: I read a ton, I'm a cellist, I'm obsessed with British history particularly 12th-16th century, marathoning TV shows that ended years ago and having a lot of nostalgic feelings

Diagnosis: Severe pain from 12 years old and diagnosed at 20.

Symptoms: Chronic pelvic pain, painful sex, infertility.

“I was so relieved to have a diagnosis, as I'd had to fight for it tooth and nail every step of the way.”

“I got a Mirena a couple of years ago that has eased my symptoms hugely. Before the Mirena, I had severe period pain to the point where I'd vomit for 36 straight. When I envisaged 30 more years of the pain, I was borderline suicidal. It's so hard to describe.”

“If you've seen ‘Saw’...the reverse bear trap. My period pain feels like that.”

“I was looking at 24 sick days per year, unless I was "lucky" enough to get my period on the weekend, and that's not even including actual non-period sickness. I've wasted so much annual leave over the years...5 sick days per year disappear very quickly.”

“It should never have taken me 8 years to get a diagnosis. It should absolutely never have taken 10 years to find something that somewhat relieved my symptoms. The fact that I spent 120 months in unbearable agony, wishing I would die so the pain would just stop – that shouldn't happen.” 

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Interests: Urban Design, Music, Art, Te Reo and Maori culture, Zines, Photography, Food, Graphic Design, Architecture

Diagnosis: I was 19 and diagnosed with stage four endometriosis. During the operation a Mirena was implanted to control the endometriosis from growing.

Symptoms: Pain, sometimes ongoing and dull, other times unbearable.

“I’ve been on medication since I was diagnosed and I have an inherent desire to go “au naturale” in the hope my body can manage. Unfortunately I’ve learned the hard way. I decided to come off my medication for six months and the condition grew back so fast that it eventually prompted a second operation.

“I’m terrified of needles and operations so with both of my operations I’ve struggled with a lot of anxiety in the lead up.”

“Alasdair Thompson said in 2011 that the reason women are paid less than men is that they are more likely to take sick leave as a result of menstruation. It was such a vile manifestation of sexism, especially coming from someone who was in such a high position of power and persuasion.”

“Perhaps sad, but I will spend my life trying to prove wrong these ignorant characters and I’m hopeful for a more progressive future.”

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Interests: Philosophy, psychology, music, art and other forms of thinking, expression and wonder.

Diagnosis: Four years ago after years of pain

Symptoms: Pelvic pain, bloating, lower back pain, nausea, fatigue

“Before being diagnosed, people were sceptical and somewhat cynical of my experiences with dealing with period pain and pain that occurs outside of period time. They would tell me that it's not that bad and to get over it.”

“I don't think it’s bad to not talk about everything all the time, but there should be a time and place.”

“The more we know about these things at a young age, the earlier we can think things like ‘maybe I am experiencing this and maybe it doesn’t have to be this bad’, otherwise like me, you go years and years with needless amounts of suffering.”

“I'm not weak, I have endometriosis!”

For more information or support, visit the Endometriosis New Zealand website. You can also call 0800 733 277