Endometriosis Update: The Kids Aren’t Alright

One of the biggest challenges in endometriosis today is the reduction in the time to diagnosis. Depending on where you are and what healthcare access you have, the time from initial onset of symptoms to diagnosis can be between 4-7 years (on average, but I’ve known individual cases which can be as short as a few months, or as long as 25 years). Obviously this is a continuing and serious issue affecting women with endo - delayed diagnosis means delayed treatment which means prolonged suffering. Of course it’s all very well and good me saying that diagnostic times need to improve, but how might that actually be achieved?

Awareness and education about endometriosis for both young girls and medical professionals is a great way to improve knowledge about the condition and therefore raise the bar in terms of quality of care received. It’s heartening to see that all the hard work of patient advocacy groups and charities has noticeably increased the presence of endometriosis in the collective consciousness. In the UK I’ve noticed far more awareness and promotion of endometriosis in just the last six or seven years. By some measures this appears to be working – in one study conducted in the US girls and women under 18 and over 18 with endometriosis were surveyed about their experience of the disease so far. The average time between symptom onset and surgical diagnosis for the under 18’s was 2 years, for the over 18’s this was 5 years. Hopefully this represents a trend of decreasing diagnostic delay for the future.

One of the key steps here is increasing endometriosis education for young girls (and it should be said, boys too). Why is educating young girls so important? A survey of over 4,000 adult women with endometriosis found that 67% experienced the onset of symptoms during adolescence. I’ve included some links at the bottom of this article that show endometriosis is not a disease of the ‘career woman’ as was the harmful stereotype for so long, it is a disease of the young girl, which becomes a battle for the adult woman.

Education of course would entail teaching girls about the signs and symptoms of endometriosis, along with how it is managed and treated. However, we’re making an assumption that endometriosis symptoms are the same in young women and adults. Several small studies in the past have been inconclusive as to whether adolescent endo is the same as adult endo in terms of symptoms and characteristics of the endometriosis lesions themselves. Some studies indicate that the physical appearance of endometriosis lesions in younger girls tends to represent ‘earlier’ stages of the disease, with atypical, subtle or red lesion types being more common in adolescents. This indicates that 1) endometriosis in young girls may be extra difficult to diagnose due to subtly of the disease, and 2) endometriosis may be progressive, becoming more advanced with age, highlighting a requirement of early intervention for effective pain relief and preservation of future fertility.

A larger systematic review of studies into adolescent endometriosis looked at results of multiple studies into the stages of endometriosis in adolescent and adult women, their findings are represented on the graph below

Adolescent data is that of those girls without failure of hormonal suppression. Adult data taken from this study,

So, while advanced stage endo does occur in adolescents, it is less common than adults. A larger study on the symptoms of endometriosis in women and girls under and over 18 found that, overall, there weren’t many significant differences in the symptom profiles, indicating symptoms of endo tended to be similar in young and adult women. Some of the key symptoms that were more common in adolescents were: non-cyclic pain that did not get better with hormone treatment, and nausea accompanying pelvic pain. These authors also found that, like adults, pain in adolescents interfered with school, work, socialising and sleep, but gastrointestinal symptoms also significantly interfered with these daily activities too. Young girls may find discussing symptoms related to periods, menstruation and gastrointestinal problems embarrassing, therefore are unlikely to openly talk about them. It is therefore important for educators, parents and doctors to have the information in these studies available to give to their children.

So far this post has focussed on the symptoms and type of disease found more frequently in young women and girls with endo. But what about the way in which endometriosis affects their lives? A recent study investigated this by giving quality of life surveys to 360 girls with surgically confirmed endometriosis (cases) and 207 girls with no history of endo (controls) between the ages of 10 and 24.

The quality of life surveys came in two parts, first a physical health component that covered: general health, bodily pain (limitation due to pain), role limitation (problems with work/daily activities) and physical functioning (the ability to perform any physical activity). Secondly, a mental health component that covered: mental health (feelings of anxiety and depression), role limitation – emotional (problems with daily activities due to emotional health), social functioning (interference with social activities due to physical and emotional problems) and vitality (levels of energy/fatigue).

The results of this study showed that the case girls scored significantly worse in every component on both physical and mental health aspects. This was particularly noticeable for general health, bodily pain, role limitation, social functioning and vitality.

A particularly interesting finding was the prevalence of anxiety and depression in young women in this study. The graphs below shows the percentage of participants reporting anxiety, depression and exercise avoidance during menstruation.

As you can see, young women with endo suffer more with mental health conditions and will withdraw from physical activity during menstruation far more than their endo-free counterparts. It is well known that anxiety and depression are more common in adult women with endo than adult women without endo, but seeing that this trend starts so early in life highlights how important early intervention for endometriosis are, not just for physical health, but mental health too.

Perhaps unsurprisingly, this study found that pain was the biggest impactor of quality of life in young women. Pain appeared to be the only factor in this study to be linked with a decrease in mental health quality of life score too. What is quite interesting is that lower quality of life scores, in particular for physical health, were also associated with starting periods before the age of 11. Another interesting finding was that underweight girls with endometriosis had lower physical quality of life scores than their normal weight counterparts. The reason this is interesting is that it fits with other research suggesting that lean or underweight body size during childhood is associated with an increased risk of endometriosis as an adult.

The question therefore arises, does low body weight cause an increased risk of endometriosis, or does endometriosis cause a low body weight in young women? Although there isn’t much research available to answer this question, one study (using a mouse model of endometriosis) suggests that endometriosis is associated with altered gene expression in the liver, leading to altered metabolic activity favouring leanness. Whether or not this is true in humans, remains to be seen.

Although this has not been a comprehensive examination of all the literature related to endometriosis in young women, we have seen that the signs of endometriosis can present at an early age, and that the symptoms of the disease can be just as bad in childhood as they are in adulthood. Given the negative impact that endometriosis can have on a young person’s life both physically and mentally, recognising the signs of the disease, treating girls’ concerns as valid and giving them effective treatment is the only way endometriosis can be tackled for future generations.