However, some conditions that affect fertility, such as endometriosis, polycystic ovary syndrome (PCOS), premature ovarian insufficiency (POI, also known as premature menopause) or uterine fibroids, can emerge during adolescence or early adulthood – these are the focus of this film.
1 Transgender and gender diverse people presumed female at birth may experience the fertility problems discussed on this page as well, but if they have decided to undergo medical treatment (hormone therapy and/or surgery) to affirm their gender and wish to leave open the possibility of becoming a parent they will have specific needs. To learn more, please see ‘Options for transgender and gender diverse people’ (VARTA) under Preserving Fertility or Gender diversity and fertility (Your Fertility).
Many of the people we spoke with had been diagnosed with reproductive health conditions such as endometriosis, polycystic ovary syndrome (PCOS), premature ovarian insufficiency (POI or premature menopause) or uterine fibroids. Reflecting on early signs of later fertility problems, they talked about what their periods were like when they were young, family members’ experiences and perspectives, and their efforts to seek help.
Early signs of fertility problems later in life
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Severe uterine fibroid disease meant Andrea could not conceive and she had her daughter via surrogacy. She had heavy, painful periods as a teenager, but didn’t question if this was normal until her early 20s.
Right back when I was sort of a teenager, and first getting my periods, talking to my best friend who I was very close with, she used to comment on how she felt mine were so much worse than hers, and weren’t normal. I used to get a lot of pain, they used to be heavy on occasion, so for me, that was my normal, but for her, she would make comments about that, which I kind of dismissed. You know, no-one can really tell each other’s pain thresholds, and, ‘Maybe I just need to suck it up.’ So, I didn’t really do much, or consider much, about that then.
Then, as I kind of got into the end of my education, end of high school and through university, and started the very early stages of my career, I started to question that maybe something was wrong, from a health perspective, because the pain was not only getting a lot worse, and had increased over the years, but the flow was pretty bad, and I had to live, I guess, you know, without being too graphic – I had to live wearing the heaviest possible pad you can imagine, and tampons were not suitable for me.
So, I really reached a point where that was happening kind of every period, whereas it used to be every one out of a few, and it was also getting to a point where it was starting to impact my life. I would struggle to go to work on some days, I would struggle to be able to attend social gatherings and do things, because on certain days, they were really what I called quarantine bed days, because it wasn’t really safe to leave the house. It was just easier to be home, in your bathroom.
At that point, when the pain was like that, when it was impacting my life, and I started to question it, I decided to see my GP and ask that question. I was, I think from memory, around maybe 23, 24, when I did that.
Sue reflects on why, as a teenager, she thought that extremely painful periods were ‘just what you expected’. In her mid-30s she was diagnosed with endometriosis.
Sue: I suppose I was about maybe 35 and I’ve always had issues with my menstrual cycle and I eventually went and saw a gynaecologist and had a laparoscopy and he said that I had endometriosis.
Interviewer: Could you tell me a little bit about when you first got your period and what your menstrual cycle and issues were like?
Sue: Yeah, it was always really dreadful and I think that was just a genetic thing. I think my mother was exactly the same. I was 10 when I got it and it was always distinctly painful with vomiting and headaches, just always was the same. When I went for help, it was almost dismissed because there’s quite a lot of it, I suppose, and I think because it had always been like that for my mother, then it was just what you expected to be like.
Melissa’s mother took her to the doctor when she began experiencing irregular and heavy periods as a young teenager. She was later diagnosed with endometriosis and PCOS.
Melissa: When I was aged 11, my periods began, they were irregular and heavy and my mother in no time was taking me to the doctor to try and sort that issue out. I was in sixth class at school and I can remember that time being a continuous round of doctor appointments. My mum tried so many different things, alternative therapies, treatments with an osteopath, naturopaths, even acupuncture.
And when I was aged 14, I had my first visit with a gynaecologist and I was given some medication then. It was the first time I’d been given an actual drug, there was always the talk that they didn’t want to give me anything that would play with my hormones. So I continued to put up with just heavy and irregular periods all through that time. And when I was aged 15, I actually had a severe haemorrhage at home overnight and I was taken to hospital in the morning and I was in casualty for several hours. I was examined. I was told that I’d be free to go home and I was going to be put on the pill to regulate my periods.
I went to get out of bed and I collapsed; I had lost so much blood. And they put me back on the bed and said, “Okay, you’re going to have a D&C,” – it was absolutely necessary. And so I had that overnight and after that I did take a pill to regulate my periods and that’s where I stayed for many years.
Interviewer: What sort of impact did that have on you with school and things?
Melissa: It had an impact because I would often take days off, you know, if they were incredibly heavy days I would take a day off. My mum was always writing notes so I didn’t participate in certain parts of sport or PE, particularly PE actually. And I used to sort of get a bit of an eyeroll until that time where I ended up in hospital and they went, “Oh okay, she’s telling the truth all along”, you know. So it was a bit painful. My friends knew and understood, but the teaching staff didn’t seem to get it.
Interviewer: It’s good that your mum was supporting you, because a lot of people get told that it’s just normal.
Melissa: Oh no, my mum, she knew it was an issue and she didn’t stop trying to find a solution for me.
Kris was diagnosed with spontaneous early menopause at age 34 and had children through IVF with donated eggs. She wishes she had ‘listened to her instincts’ about her menstrual cycle in her 20s.
Kris: I’d been on and off the pill a little bit in my 20s when I’d been in a relationship, when I hadn’t been in a relationship. Whenever I’d come off the pill it had always taken a while on reflection for that period to come back. I always had fairly short cycles. I’d never had a particularly heavy period. I never really got a lot of PMT. It was all, that side of things was all fairly simple. Never caused me the same angst, I think, as it did with some of my girlfriends.
My mother had always said to me that she… I always had in my head my mother had gone through menopause at 40. That’s why I was keen to sort of like, with that 35 mark in my head, that 35 mark was a mark that I had to be really conscious of. When I got the results back from the doctor, my mum had said to me it was probably more like 38 that she started to have issues with her cycle.
Interviewer: Looking back over your experience, if you could change anything about it, what would it be, whether that’s for you or for others?
Kris: I think I would definitely listen to my instincts a little bit more. Like if I could go back and say, “Okay, well maybe if your period’s not coming back and you’re in your 20s, that’s something you should get checked out.” I would also say it’s not bad to advocate on behalf of yourself to have your hormones tested earlier.
Endometriosis and fertility – Jean Hailes
How fibroids affect fertility and pregnancy (2017) – article by Alexandra Carlton in Kidspot
‘I have PCOS and I want to have a baby – what do I need to know?’ (2019) – article by Sara Holton and Karin Hammarberg in Your Fertility
PCOS, fertility and pregnancy – Monash Centre for Health Research and Implementation infographic
What are my family planning options if I have POI? – US National Institutes of Health
Early Menopause and IVF, fertility preservation and other paths to parenthood – Healthtalk Australia Experiences of Early Menopause online resource