A successful pilot program ran in SA in 2017 based on New Zealand’s ‘ME’ program, which has been active in schools for 20 years. Early intervention and education has the potential to save young women from a lifetime of pain and frustration, and I am very passionate about this program reaching our youths. Here is my story, which I shared at the parliamentary briefing on November 16, 2017, alongside Dr Susan Evans from Pelvic Pain Foundation Australia and other women with lived experience of endometriosis:
I’m going to tell you some pretty personal stuff today, but I am very comfortable with that, because tricky stories need to be told in order to write happier endings.
I am a media advisor, education consultant, teacher and journalist. My job is such that I can work from home when I need to because I am living with endometriosis. I have had to make many allowances for my illness since I was diagnosed, but it was a long process to get here.
The first time I got my period, I fainted and hit my head on the bathroom vanity on the way down. My mum and sister came running to my aid and they knew straight away what was wrong. As I lay on the cold tiles, my mum and sister shared their tales of woe about their cycles and the pain and horror and the fainting and the nausea… I was mortified. I counted the months until menopause (492 FYI) and it was all seeming pretty bleak. I wondered how women survived and why they weren’t all wearing helmets to protect their heads from all the fainting.
I didn’t have a very regular cycle but it was painful. My mum and sister were the same. My mum’s mum the same as well. Mum told me her mother (my grandmother) had miscarriages and was ‘reliant’ upon painkillers. She died too early from heart failure at age 52.
Mum didn’t have any miscarriages or problems getting pregnant, but I’ll come back to her later.
My sister had some issues with having children, but that’s her story to tell. I will say, though, she has two gorgeous sons who I adore.
As for me, at 17 I went to a doctor after I’d described my awful symptoms to a friend. She had endometriosis and said I might have it too. This was in about 1996. The doctor told me because my periods weren’t regular, it couldn’t possibly be endometriosis because endometriosis a menstrual condition and I wasn’t ‘menstrual enough’. He diagnosed me with irritable bowel syndrome.
I went to see another doctor when I was 19 and living the good life in Cairns. He said it couldn’t be endometriosis and it was probably homesickness and over indulging on Cairns lifestyle. I’ll be honest; the latter was true, but probably not entirely related to my painful uterus.
Living in Jindabyne and enjoying a Perisher Blue snow season at 22 years old, I collapsed from severe abdominal pain one morning and was rushed to hospital where a lovely, gentle surgeon, who looked remarkably like a bushranger, removed a perfectly healthy appendix.
At 25 I went to a doctor to talk about my cyclical depression and anxiety coupled with abdominal pain. He diagnosed me with manic depression, which we now know as Bipolar Disorder. He told me the pain was a symptom of depression. I tried to explain that I only had these dips in my mood in the middle of my cycle (ovulation) and just before my period and that I didn’t think part-time bipolar was a thing. He prescribed me with a high dose of antidepressants, which I never took.
I’m not telling you about these doctors to demonise the medical profession. They can’t know everything; they were just going with the information they had at the time. The point is that I was totally uneducated about women’s health and my own health, so I wasn’t any help either. If only there had been an education program at my school…
In 2013 I settled down with a beautiful man who has two fantastic kids from a previous marriage. We tried for a baby, but I had an ectopic pregnancy. This turned out to be the first of six failed pregnancies and it was horrific. My tubes were blocked, (we know now they were full of endometriosis) and my pregnancy grew on the outside of my uterus where it sat and decayed my insides for about 10 weeks. It was really painful, but because I’d built a high tolerance for pain, I just breathed through it and endured. I just thought all pregnancies must have been this painful (and I was still questioning why there weren’t more helmet-wearing women). I went for a scan when I started to bleed and I was rushed in for emergency caesarean surgery to remove my failed pregnancy and part of my uterus.
After that surgery and the subsequent recovery, my pain got worse and worse and I kept going back to my surgeon asking if I was still decaying inside, or if there was an infection, or did he leave a scalpel/forceps in me? Each time, I was sent away with Buscopan or Panadeine Forte. Finally after a full year, the doctor rather reluctantly agreed to do a laparoscopy and found stage four endometriosis. I wasn’t even mad at him (ok, maybe a little), because I finally knew what was wrong with me.
Since that surgery, I have had five more miscarriages (not as dramatic as the first) and I have not had any successful pregnancies. The most recent advice I’ve had is that my uterus is severely damaged from the ectopic pregnancy and endometriosis; and now I’m 40, I probably need to put that dream of motherhood to rest.
The physical and mental pain is difficult to live with, but I have a good husband, adorable step-daughters, a great doctor, a network of friends with endometriosis and some exceptional painkillers. I also have flexibility in my work so I can work from home when I need to, but many women do not have that luxury and either have to work through the pain or quit their job, which is why early intervention is so crucial.
We now know a lot more about endometriosis than we used to, which is great. I know a lot more about it thanks to excellent doctors, support groups and Dr Evans’ book .
We know that it can be genetic and I think we can safely assume the women in my family had undiagnosed endometriosis, which is why my mum told me and my sister our pain was normal: because her mum had told her that.
But what if she had been told as a teenager that the pain she was in wasn’t normal pain? She told me she missed at least two days of school every single month as a teenager. That’s over 120 missed days of school. And what if her mother had been helped to manage her pain better? What if I had been helped earlier?
Early intervention and education is absolutely crucial for young girls and women. I really hope we can get talking to teenagers because, quite frankly the main message I have here is that I do not want them to go through what I have.
As a teacher, I am well aware that many of the most important conversations teenagers have start at school. We need to start these conversations and save our girls from the pain women like me went through.
For some women, pregnancy can stop the endometriosis. This is absolutely not the rule; a hysterectomy doesn’t always stop it either. But when my mum had me, she never had those awful symptoms again.
So I think we can safely assume I cured my mother.
Now I am really dedicated to curing everyone else, or at least helping them to understand their condition better and getting them to a doctor, and insisting on their insisting that doctor getting to the bottom of the issue, so to speak.
Admittedly my story is a sad one, but I am ok, especially when I can join people who are so dedicated to this cause. And while I may be in the last chapter of my story, being 40 and heading to those menopause days I longed for when I was laying on the cold, bathroom tiles, there are so many new stories being written every day by young women and girls.
Let’s give them a happy ending.
By Libby Parker