I got my first period when I was 14 years old. I had been told all about getting my period, I had had sex ed classes in grade 6 and year 7, my mum and sister talked to me about it, I was ready for it! I wanted to grow up, I wanted to wear a bra, I wanted my period!
But then I got my period. We were on holiday with my gran and late grandad. I started getting pain in my tummy, I thought it was an upset stomach so I went into the toilet. Sex ed told me there would only be a table spoon of blood, I remember them saying it and showing it in a cartoon, there was only meant to be a table spoon. I was terrified, there was so much blood. I didn’t even know it was my period, I was in the bathroom for over half an hour, I could hear my gran getting annoyed because she and my sister needed a shower.
Finally I called my mum to the door, cue her and my sister rushing around trying to find a pad for me, I used a lot of toilet paper and 2 pads because I was so scared I would leak blood everywhere, I had read enough “Dolly; embarrassing period moments”. My first period lasted 2 weeks.
From then on my periods were excruciating, no one ever told me this wasn’t normal. When I was 18 I saw a doctor and mentioned my periods were quite heavy and painful and could I do anything to help with it, he put me on the pill and suggested an IUD, after research into an IUD I decided it wasn’t for me, it seemed a bit daunting and at this point I was very shy in regards to my reproductive health so I stayed on the pill.
It seemed to get worse, we ended up trying 3 different forms of oral contraception, obviously giving each one time to do what it was meant to, help ease pain and bleeding. It just kept making things worse, it got heavier and more painful, I felt so sick. I stopped taking the pill, the doctor then suggested an Implanon, I gave it a shot for a few months but again it made me feel awful.
I gave my body a rest for 12 months, for the first 6 months my period never showed up, I knew I wasn’t pregnant, I’d never had sex or any type of sexual relationship, this was just my stupid reproductive system acting up like it had since I was 14. Then my period came. It didn’t go away for roughly 6 months. It wasn’t heavy all the time, more so just cramping and spotting heavily. My period then stayed irregular, 2 months on 3 months off, 1 month on, 5 months off. The first week when my period would come it was excruciating, but I’d keep living, everyone kept saying it was normal.
My GP suggested the Depo needle to try and regulate everything, because hormones had worked well in the past right? I trusted my doctor and got the needle. I had the exact same reaction as before, it made everything worse. It was then a family member told me about Polycystic Ovarian Syndrome which can be diagnosed through certain blood tests and internal ultrasounds and Endometriosis which can only be diagnosed through a laparoscopic procedure, she had suffered from Adenomyosis which is the “sister” to Endometriosis but can only be diagnosed through a hysterectomy.
This began a new search for me, I then got a referral to see my local women’s health hospital, this took 12 months to get into but I knew it would be worth the wait, I’d finally get some help. My appointment came around and the doctor was the opposite of helpful. They did an internal exam, the pain made me cry. They then said “we can’t find anything what do you want us to do?” I didn’t go back for a follow up. I thought I was being weak.
One morning I woke up and was in so much pain, surely this wasn’t normal, I messaged a nurse friend, they told me to go to ED. I didn’t want to go to my local hospital again. I ended up catching a train to The Royal Women’s in Melbourne. Someone finally listened to me. The ED doctor said she believed I could be suffering Endo or PCOS or possibly both. She referred me to get an ultrasound and be seen by their endocrine/metabolic clinic.
Within a month I was booked in for an ultrasound and was diagnosed with PCO, this is different from Polycystic Ovarian Syndrome, it just meant that my ovaries were prone to “cysts”, these cysts aren’t what we normally think of when it comes to that word, we think of infection and in some cases pus. This is more our eggs don’t develop fully and become “cystic”. I then began seeing the endocrine/metabolic clinic. They believed strongly that I had Endo as well, but as surgery was the only way to prove this they were hesitant, they suggested oral contraception, the Depo shot, the Implanon and the IUD as treatment, I strongly declined saying they made me worse.
A lot of doctors I saw didn’t seem to believe this, I was told pregnancy or contraception would treat my Endo. Pregnancy is a common misconception, yes it does help some women, but I’ve heard it has caused so many more issues for others. I then found the love of my life (soppy I know, but if you knew this guy you would get it) he was the most understanding and supportive relationship I’d ever had. He comes to every RWH appointment I have.
I began pushing for surgery, and finally I was referred to the surgical clinic, I was told by the doctor that I was too young for Endo and it was not likely at all that’s what I suffered from, she left the room to discuss with the surgical team should I have the surgery, they decided that I should. We were on the train home when I got a call from the admissions nurse saying they could book me in in two months. They convinced me that the IUD would be great to put in while I was under as it doesn’t have the same amount of hormones as the other contraception I’d been on had. I agreed. They were the professionals, I trusted them.
The day arrived. I was told I was under for 3 hours because of the mass amounts of Endo that they had to remove. The recovery was hard, there are two ways to remove Endo, cutting or burning, cutting I’ve been told is a lot more effective which is what they did. Imagine the pain of having mass amounts of your insides cut out. I know a lot of people with female reproductive systems and even their partners, friends, family can relate to this pain.
I ended up in my local ED a week later due to an infection, which is normal, surgery can get messy. The ED doctor told me he suspected my Endo was coming back, it wasn’t an infection and that I should get pregnant ASAP. This baffled me, Endo can not grow back in a week. I saw my GP the next day and she did some bloods and saw that there was an internal infection somewhere so put me on some strong antibiotics. The IUD was a bad idea, I was just as sick and sore. I had it removed 3 months after the surgery, within 24 hours I felt like a new woman, I could move, I didn’t get fatigue every second day where I couldn’t physically get out of bed, I felt good!
Fast forward 2 years, my partner and I decided we wanted to start a family. We tried for 12 months with no luck, I decided to see a specialist in my home town, he had been in town for decades. He cared. I started going down hill again, sleeping all day because I physically couldn’t get up, my periods were as bad as ever. We ended up having another surgery at Royal Women’s, they found my right ovary adhered to my pelvic wall and had to cut it away.
We are now in the process of trying to conceive again, which I am now needing fertility treatment for. This treatment makes me sick, my boobs are constantly hurting to the point if I graze them I have to grit my teeth. This will all be so worth it if my silly little ovaries do what they were designed to do and give us our little miracle. Some days I give up hope completely, some days I wonder if I shouldn’t be a mum and that’s why mother nature won’t let me naturally be one, but my partner snaps me out of those moods, we will be amazing parents.
I hope my story helps some people going through this. You are not alone. You need to fight to be heard. Endometriosis does not have an age, a race, and for some a “gender”. Endometriosis is a bitch, and it will hit whoever it wants, whenever it wants. My story is my own, I’ve heard of contraception being a miracle worker for some, it just didn’t agree with *me*. But that works the other way too, if contraception does not agree with you, don’t be afraid to put your foot down, it is your body and your choices. Fight to be heard.
There are so many times I have felt worthless and stressed. I still do feel this. Now I choose to fight rather than be walked over. This is not normal. Don’t settle for second best.
It still feels like I’m fighting a battle everyday.
As a whole doctors and the public need to be a lot more aware of reproductive issues. One in five women suffers. That is too many women. Stop going by the “book”. Everyone is different and they need personalised treatments. We are people, we aren’t cases in a medical book.
Don’t give up. You will be heard.
This story was a contribution to the Storylines: Her Voice Matters project, a collaboration between Women’s Health Goulburn North East, Women’s Health Loddon Mallee and Murray PHN.