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My Endometriosis Battle

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Category: Impact on Quality of Life.

My Endometriosis Battle (Women Talk!)
I first got my period at the age of 12. For as long as I remember my periods have been painful, heavy, and irregular. When I was 18, I decided to go on the contraception pill for menstrual management.
When I was 21, I remember waking up one morning having bleed through my sanitary pad, pajamas, bedding which included a mattress protector and on to the mattress. At the time I thought I was having a miscarriage, although I did not know whether I was pregnant or not. I did not seek medical attention at the time, because either way, I did not want to know. When I look back this was the first clear sign that pinpointed the start of when my endometriosis symptoms started to escalate.
When I was 22, I noticed that my periods were becoming heavier. My menstrual flow further increased when I changed between contraception pills. The change came about due to government funding and supply changes. At the time I was told that the contraception pill that I had been on since I was 18 was just being ‘rebranded’. I later found out that they were two different pills and that I could no longer get the contraception pill that I was on. I started to notice changes in my body’s response to the new contraception pill. I started to get acne, which I never really experienced prior. My periods began to get heavier and painful.
Heavy to the point that I would have to wear two maternity ‘heavy-duty’ sanitary pads. My menstrual flow was so heavy that tampons where no longer an option. I felt degraded, while on my period I was one step away from wearing an adult diaper, at age 22. By the time midday came about I would have bleed through both sanitary pads, my underwear, and pants, and wound have to go home at lunchtime from work to shower, re-pad up and change my clothes to be able to continue on with the rest of my day.
My periods become so painful, especially at the start of my period. I had to take sick leave from work for the first couple of days of my period because the pain was so intense that I could not function. I would often curl up in a ball with an ice pack down my pants and would misuse prescription pain killers and alcohol just to be able to sleep.
Having had this experience, I arranged an appointment with Family Planning to come off the contraception pill and to get a copper IUD inserted into my cervix. While waiting for this appointment, one night my bleeding became so intense that I began dripping blood. I would fill a heavy-duty sanitary pad within five minutes. After receiving Healthline advise I ended up in the emergency room. I advised hospital staff at the time that I was not pregnant, but with a miscarriage being the simplest answer to my bleeding they took a blood test to check my hormone levels. I sat in my own blood while I continued to bleed in a waiting room surrounded by strangers for 6 hours straight. I saw the doctor at 1 am in the morning, he told me what I already knew. I was not pregnant, and I was not having a miscarriage. The male doctor then told me my bleeding was NORMAL; ‘a bit on the heavy side but still normal’. By then the bleeding had slowed to an almost stop. I went home deflated, with no answers to what caused my bleeding and no follow up referral or plan. I clearly remember how heavy my head felt, I barely had the energy to keep it upright. It took me three days to recover enough energy to go back to work.
I soon got my cooper IUD inserted, which helped reduce my menstrual flow. I was no longer bleeding through sanitary pads. However, my period went for 7-10 day long to 3 months. Over this time, I became so fatigued, I would go to work and then straight home to bed. I developed stomach issues and was no longer able to digest food without bloating and pain. I went through episodes of nausea and fainting. At the time I went to multiple health providers for advice and treatment. I was declined to be seen by the public health gynaecology team because my symptoms were ‘not severe enough’. I was told by a health professional to ‘just get pregnant’ and that will fix me. After 6 months of appointments I was referred to a private gynaecologist. Within a week I had a surgery date.
I went into my surgery terrified that I was wasting everybody’s time and thousands of dollars (provided by medical insurance) and that I was making a big deal out of nothing. Because for years I was told that everything was normal and that to have heavy and painful periods is just apart of being a woman. Going into theatre I was told that I would have an incision through my belly bottom and down lower, and if signs of endometriosis were found I will have an incision on the left and right side of my abdomen. When I woke from my surgery, I started patting down my stomach, the nurse asked if I was OK. I told her I was seeing if I was crazy or not, and sure enough, I found a plaster on the left and right side of my abdomen. Instant mental relief. My surgery resulted in the removal of three endometrial growths and the removal of adhesions which form within and outside of my uterus. The copper IUD was removed from my cervix and replaced with the Mirena (a hormone infused IUD).
It was not until after my surgery that I realised how much endometrioses limited me. Colour came back to my face and I learnt to love my naturally blushed cheeks. I have the energy to achieve everything I want to achieve in a day and more. I no longer get periods – thanks to the Mirena. These four scars gave me a huge portion of my life back.
I still experience consequences of endometriosis today. Adhesions that formed tucking into my bowel have been removed, however, I still experience pain and bloating with food digestion. My body shape changed after my surgery, I carry weight differently now and have had to process through self-body-image issues. I have had to grief (and am still grieving) the fact that the damage caused to my uterus and reproductive organs only gives me a 50% chance of conceiving and carrying a child to term in the future.

Awareness. Let’s talk women!
Let’s break the stigma, break ignorance, and spread awareness. Awareness promotes support, early diagnosis, and treatment. Meaning that women do not have to live in pain, fair, and grief over a percentage.

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Strength through support - mā te tautoko, ka whai kaha, ka ora

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