Tests for the cause of spontaneous early menopause (EM) or premature ovarian insufficiency (POI) are often undertaken after diagnosis of EM (see Seeking help and diagnosis for spontaneous early menopause and Delivery of diagnosis and emotional impact of early menopause: Health Practitioners’ perspectives). However, most cases of spontaneous EM or POI are ‘idiopathic’, meaning there is no known cause . Genetic factors that can cause EM or POI include Turner Syndrome or Fragile X syndrome, although these conditions affect a small minority of women (as gene carriers or as people diagnosed with the condition). Other factors associated with EM or POI include a family history of EM/POI, autoimmune conditions such as thyroid disease, or galactosaemia. There is mixed evidence that smoking, not having children, HIV infection, hysterectomy, environmental toxins, and emotionally stressful life events may also be associated with earlier menopause. For more information please see the Box at the end of this Talking Point.
Cause of spontaneous EM/POI: What women described being told by health practitioners
Among the women we interviewed who experienced spontaneous EM or POI, only Vicki, who was diagnosed with Turner Syndrome, had received a clear explanation of the cause of her POI. Some women recalled having tests to try to find out the cause of spontaneous EM/POI after their diagnosis, but none recalled receiving a clear result. Melinda recounted what she was told about the results of her test to see if she was a carrier for Fragile X syndrome: ‘They found a very, very slight indication that there might have been something that had led to EM, but it was not conclusive. So they really said it was early menopause with no known cause.’
Lorena did ‘all sorts of medical exams’ in her home country in South America to find out why she had experienced spontaneous EM, but no cause was found.
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I went to so many doctors trying to find a reason for this [early menopause], and they made all sorts of medical exams that you can imagine; genetic ones, blood test, the exam of the brain with contrast, like, it’s a bit dangerous. [laughing] I did everything and no-one knows, not a clue because no-one in my family has it. One doctor said, “You [are] just born like that.” And they really don’t know why, and this is really difficult.
Plus the fact of the way some doctors behave in cases like this; I could notice that some of them never heard about it [early menopause] or have – had some case of doctors saying to me, I was worried, I was afraid. Some doctors said, “Look, you have a body of a 50 year old woman.” And I was desperate so I was going in different doctors to see what they were talking about.
Women’s own beliefs about the cause of EM
A few women described their own ideas about what had caused or ‘pushed along’ spontaneous EM. Some women talked about one potential cause, while others speculated on several different possibilities including a short menstrual cycle, IVF, a family history of EM, autoimmune conditions, and stressful life experiences. There is no definitive research evidence that all of these factors can cause spontaneous EM – see the Box at the end of this Talking Point.
Family-related factors
A family history of spontaneous EM/POI was mentioned by some women as a possible cause for EM. Finding out that her grandmother had experienced menopause in her mid-30s prompted Anna to do ‘a bit more research’ to find out if her difficulties conceiving a third child and other symptoms she experienced in her early 30s were indications of EM.
Jessica wondered if her early menopause was genetic and reflected on what this might mean for her daughter.
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I remember my mum talking about being on hormone replacement therapy… She would have been late thirties – in her late thirties, like 39 maybe, and so it clearly – I don’t know, I just – N equals one sample. However, there seems to me to be a link between, or a similarity, a startling similarity between her age for menopause and my age for menopause.
Now, my daughter had her first period almost to the day that I had mine, so I’m looking at her thinking “You don’t have forever to have children.” You need to be – and it’s a shame. It’s really terrible to be looking at – to have this sort of deadline by which your body says you must have children, and from my perspective as a parent, having done the kids and got on with the rest of my life, it doesn’t seem to – it wasn’t ever a problem but I can imagine as a teenager now knowing that that deadline for you is earlier than it perhaps is for other women is perhaps something to – to be concerned about. I don’t want her to hit 35 and not have kids and go, “Oh no, I’ve only got three years left,” which is perhaps what she’s got. So that’s a bit of a concern. Not a concern but, it’s just something in the back of my mind and a conversation that perhaps we’ll have to have at some point.
Autoimmune conditions
A couple of women wondered if past or co-existing autoimmune conditions were linked to spontaneous EM, including thyroid conditions.
From what she had read online,
Sonia thought that her Hashimoto’s Disease (a form of hypothyroidism) and early menopause were linked.
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… there’s lots of women like me, who have gone through early menopause, or who have Hashimoto’s, or who have had some combination of both, because there tends to be anecdotally online certainly a correlation between Hashimoto’s and early menopause. And auto-immune disorder and early menopause, that is something that appears again and again and again online. … So I sense that one [chronic fatigue] sort of went into the next, which is Hashimoto’s, and for me the managing of early menopause and what that was – I don’t separate that from managing the Hashimoto’s. … So I just see what I’ve experienced replicated over and over again in other women’s stories. And it seems to me that’s kind of un-ignorable, you know.
Stressful life experiences
Traumatic experiences earlier in life were mentioned by a couple of women as possibly contributing to spontaneous EM. Melinda, who unexpectedly lost a very close family member in her 20s, speculated on the ‘mind-body connection’ and felt that stress had ‘played a part’ in her experience of spontaneous EM.
Coping with unexplained EM
Some women found it took time to ‘make peace’ with not having an explanation for the cause of EM, including Debra: ‘it seems to be spontaneous and no reason why, and I guess that’s been hard.’
Having had ‘answers’ for other health conditions, accepting that there was no known cause for spontaneous EM was ‘very hard’ for
Kirsty.
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I think that one of the first things that happens when you get a premature menopause diagnosis, if it’s non-surgical, if it’s spontaneous, is searching for answers. So I had the chromosome X gene tested, which is often what they say can be part of the, you know, the formation of early menopause and I was – that was a negative result. There’s no history of early menopause in my family. I don’t even have that aunt who never had children in the 60s and no-one knew why. Like my – I have a very fertile family [laughing]! You know, they’re – it was very hard for me, searching for answers. And I have a history of asthma and other medical things, where I have answers. And that was probably the most challenging for me, was going on that search for answers and not being able to find any. And I guess that meant that I actually just had to make peace with it because there was no-one there to tell me why this happened or how long it had been going on exactly.
And also, there was no answers for me. Like with BRCA 2, I couldn’t take HRT straightaway. I literally had to live menopause. You know, I had to – I felt it on a very physical level, on an emotional level, on a personal level and there were no solutions. I went to see naturopaths, I went to see Chinese herbalists, I went and saw all of the array and tried all different things to try and minimise the impact of menopause or increase my fertility and none of them worked. I mean they took the edge off, but they didn’t really work for me.
And so, I guess that I had to just make peace with living it, and just accept also that I was never going to really know why, it was just that was the amount of eggs I was born with and I’ll forever blame my parents!. No, I won’t blame my parents [laughing] for making me this way. No but it’s – you know, you have to make peace with menopause in lots of ways, I think. Especially when you’re – when you’re in your 30s.
Others were more accepting about the fact that no reason for their spontaneous EM/POI had been found.
Because early menopause was ‘really sudden’ for
Maddy, at first she thought it might have been caused by an illness. However, when health practitioners could not identify a cause, she concluded she had only been born with a certain number of eggs.
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I did want to look for answers but I was more thinking I had a tumour on my pituitary gland or something. I was thinking it was more something like that. … because it just happened so suddenly as well. It wasn’t a year of on and off-ness, or two years of it. It was just really sudden. That’s why I thought, ‘Oh there’s something going on.’ So when there wasn’t, it was like, ‘Okay, so this is it, I’m done.’ It wasn’t even a – a perimenopause that goes on for so many years. It was, ‘That’s it.’
I go with the theory, the medical theory, of you’re born with so many eggs and that happens in – while you’re in utero. That’s how many eggs you’re given and that’s it. And for some reason mine were until I was 40 and some women it’s when they’re in their 50s. I don’t have any theory around that reason. Like my sister isn’t in menopause or anything so yes why that happens I don’t know.
Cause of spontaneous EM/POI: Clinical research evidence
In up to 90% of women with spontaneous premature ovarian insufficiency, the cause is unexplained. Genetic causes include Turner syndrome, and Fragile X syndrome carrier.
POI can be associated with autoimmune disorders. Autoimmune thyroid disease is the most common autoimmune association with POI; however, adrenal, parathyroid, type 1 diabetes mellitus, pernicious anaemia, myasthenia gravis and connective tissue disorders are also associated. Rare metabolic causes include galactosaemia and rarely some viral infections such as mumps may be associated with POI. Chemotherapy and radiotherapy including the ovaries (pelvic or total body irradiation) are associated with POI. Older age, greater cumulative dose and chemotherapy regimens containing cyclophosphamide are associated with greater risk of POI. Factors associated with an earlier menopause include smoking, never having had children, hysterectomy, HIV infection, illicit drug use, a family history of early menopause and adverse life events. There is no evidence that early menopause is associated with the use of oral contraceptives, fertility drugs or artificial hormones in the environment. Childhood caloric restriction, emotional stress at a young age, lower socioeconomic position and environmental toxins are factors identified in some but not all studies.
(Source: Australasian Menopause Society HP Information Sheet ‘Spontaneous POI)
Further information:
Talking Points (Women)
Talking Points (Health Practitioners)
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