Years of pain, misdiagnosis and struggle

At 14, I started birth control to help with my painful periods. I quit all of my after-school sports and missed a decent chunk of my first year of high school. Going on birth control met with some raised eyebrows at the time, but it made a significant difference to me.

I took a break from birth control in my early 20s after getting married. It was fine for the first few months, until my periods began to stretch out to 10-14 days and came with large clots and cramps that made me want to vomit. It was at that point I decided I would stay on birth control injections until I wanted to get pregnant.

Unfortunately, once I went back on to birth control, it removed the heavy periods, but it was no longer masking the symptoms the way it used to.

And over the next year I developed another symptom, ovulation pain. This pain on several occasions became so bad I thought my appendix was bursting. After a particularly bad bout of this I took a trip to the urgent medical care centre, where they confirmed my appendix was fine. I was told it’s normal for women to experience pain during ovulation.

It became painful to do other things too. Painful bloating after eating became a regular occurrence, particularly around my period. Using the bathroom hurt and even being intimate with my partner became painful.

I went to a doctor and was told that even though I was in a committed relationship, that does not mean my husband is and I should have an STI test to confirm I did not have chlamydia or another disease causing the pain. The suggestion my husband may be cheating was understandably distressing to hear from a doctor. The test came back negative.

My mother was diagnosed with severe endometriosis when I was 11 and underwent a partial hysterectomy at age 34. Could it be that I had it too? Unlikely, the doctor said. Instead, I was told I should go on iron tablets because my iron was a little low and that could be making my cramping worse, and sent on my way.

I felt like I had hit rock bottom. The pain left me feeling constantly exhausted and I also felt a huge sense of shame. Quite often I would be sitting at my desk at work in agony loaded up on Panadol, not wanting to tell anyone what was wrong. What would I tell them? I have pain that I have been told repeatedly is nothing to worry about from medical professionals.

The diagnosis

My husband was the one that convinced me to tell the doctor that something was wrong. And by convince, I mean he brought it up to the GP I was seeing about needing some antibiotics, so I felt like I had no choice. In his defence, he had been gently encouraging me to seek help for months, but I had been reluctant because of all those prior unsuccessful encounters with a GP.

I had up until this point been told the symptoms were normal, or somehow my fault and were down to my diet or lifestyle choices.

But by 2020 the pain I was experiencing had meant our plans to try for children felt impossible. Now I had nothing left to lose.

But this time, finally, I felt listened to.

This GP arranged for me to see a specialist at Wellington Hospital. She asked me how many children myself and my partner wanted, to which I replied two and she told me I was smart on planning on trying for children in the next couple of years if I am confirmed to have endometriosis. She told me I should really be trying before 30 if I want to have more than one child. It was better to be safe than sorry.

I was incredibly fortunate that within a month, a space had freed up for a publicly funded surgery at Wakefield Hospital. After less than an hour in surgery I was confirmed to have endometriosis and what they found was burnt out with a laser. A birth control device called a Mirena was also fitted, which I was told would help symptoms and slow down any endometriosis from growing back.

When I saw the pictures of what looked like black freckles splattered on the inside of my pelvis, that feeling of shame came back again. I had been diagnosed with ‘mild’ endometriosis, meaning it causes me pain and inflammation, but I didn’t have blood filled cysts commonly known as ‘chocolate cysts,’ deep scaring or organs sticking together like superglue like some other women with stage three or four endometriosis have.

I felt like the surgery was wasted on me rather than other people who needed it more. I was making a fuss, like I was made to feel in the years leading up to my surgery.

My surgeon was very reassuring, told me where the endometriosis had been found and explained why I was feeling so much pain.

That shame I felt eventually changed to frustration after healing from surgery, because for the first time in years I was not in pain. I took less than an hour of key-hole surgery to make years of agony stop.

I continued to live my life pain free until about the middle of last year. My bowel symptoms have returned and in recent months I have noticed the stabbing pains in my pelvic region returning.

The pain is nowhere near as bad as my lead up to surgery, but it is a sharp reminder of a condition that could affect my journey to becoming a mother.

The facts

About a third of women with endometriosis will have trouble falling pregnant, according to Dr Simon McDowell, medical director at Fertility Associates.

Infertility is defined as having tried for a baby for an entire year without falling pregnant.

He stresses not all women will experience infertility, but it’s something they should be aware of.

“Of the couples coming here to Fertility Associates, up to a half of them might have endometriosis, but that does not mean it’s the reason for infertility in all of them. It is very common, but there are some people with other factors going on.”

Dr McDowell says there are different types and severities of endometriosis, which can affect a woman’s fertility in a variety of ways.

“We know for those with the more mild to moderate stages of [the] disease it’s likely inflammation. When you get to your more severe stages it’s really getting down to anatomy.

“The [fallopian] tube and everything should be gliding freely, but if it’s all stuck as if someone squirted a bit of superglue in there, that may affect things in a more severe fashion. The egg just can’t get to the tube.

“Even big cysts on the ovaries, that can affect the functioning of the ovary and egg reserves.”

He notes age is a huge factor in fertility and can go hand in hand with endometriosis, which for some people can develop as they age.

“A woman’s fertility is pretty stable until age 30-31, a gradual drop until 35 and then it gets much, much steeper.”

It also increases the chance of miscarriage.

A tough decision ahead

I desperately want children, but my plans for an OE and buying a home to raise those kids in were suddenly interrupted by Covid and the chaos that came with it.

So at an age I thought I would be welcoming my first child in the world, I am feeling nowhere near ready.

I am not alone in deciding to have children later. The median age for first time mothers has increased from 27.4 a decade ago to 29.8 in 2022.

If I did not have my diagnosis and returning symptoms, my husband and I would happily wait until our mid-thirties for children without another thought. But that’s not our reality.

So, I have a tough decision in front of me; either having a child when I am not ready or waiting and facing the potential risks that come with that.

And before even trying for children I would need to take out my Mirena, which could make my symptoms much more severe.

Our stories

In many ways I am fortunate that the stage of the disease I had when it was detected was nowhere near as severe as what others suffer from, and it was caught early.

As part of this series, I spoke to many women about their experience with this life changing disease and its effect on planning for parenthood.

Ruby Rowe is 28 years old and was diagnosed with stage four endometriosis in her mid-20s. Another surgery on her bowel could result in life-altering changes to her anatomy. But she very likely needs another surgery before she can try for children.

For others such as Caitlin, a decision not to have children led to a delay in diagnosis and treatment. She had to turn to the private healthcare system and take annual leave to have surgery, because she had already exhausted all of her sick leave.

Wellingtonian Natasha Harris did not find out she had endometriosis until the age of 38 and has accepted that children are unlikely to be in her future.

And broadcaster Miriama Kamo, who was diagnosed with endometriosis at 31, lost six pregnancies during her motherhood journey.

These are each deeply personal stories and they’re difficult to share.

But each woman is telling their story, like me, in the hope that others will not feel that they are alone. We all hope to encourage changes in women’s health for the generations that follow us.