One of the many misconceptions around endometriosis is that it is a disease solely afflicting adult women in their mid-thirties. This belief was prevalent for many, many years and still lingers today. However, whilst it may be true that most women with endo are usually diagnosed in their twenties or thirties, the truth is the symptoms of endo appear far earlier and, through dismissal of symptoms leading to diagnostic delay, the true age at which endometriosis presents is overlooked.
Fortunately today there seems to be a drive to increase study and awareness about endometriosis in young women. Today I am going to discuss one such study from the US, a free, full text version of the article you can find here.
This study included 25 cases of girls under 21 years old undergoing laparoscopy for pelvic pain who had no previous diagnosis of endometriosis either from laparoscopy or radiological methods (ultrasound, MRI etc). Information was collected from all patients before and after surgery to see what the characteristics of endometriosis in these patients could tell us about adolescent endo (albeit in a small cohort, but you’ve got to start somewhere).
The average age of the patients in this group was 17.2 years old. Interestingly 14 out of the 25 (56%) reported a family history of endometriosis. This is far higher than what you would expect if it was a group of girls selected at random from the general population. What this means is that risk of developing endometriosis at a young age is significantly increased by a family history of endo, a fact that doctors and women with endo who have daughters need to be very aware of. The results of this study do seem to suggest that parents with endo are more than capable of advocating their case though, as 44% of referrals came from the patient’s mother.
In terms of the symptoms the girls experienced, the most common gynaecological symptoms were the ones most typically associated with endo, such as dysmenorrhoea (excessively painful periods) in 64% and abnormal/irregular bleeding in 60%. This is an issue of particular importance as these symptoms can lead to days missed from school every month, potentially damaging a young girls prospects in adulthood. Only 4 out of the 25 patients reported dyspareunia (painful sex), but being as only 8 out of the 25 reported being sexually active, dyspareunia is a poor measure of endo risk in this population.
Of the gastrointestinal symptoms nausea was the most common, being present in nearly half (44%) of all patients. Between a quarter and fifth of all patients experienced some other gastro symptoms, such as constipation or diarrhoea. Fatigue, an often unrecognised symptom of endo, was also present in around a quarter of all patients and seems to get more common with age.
A very high degree of variation was reported in the time it took from the initial visit to a physician to diagnosis. The range in this cohort varied from 1 month to 9 years, with the delay between onset of symptoms and diagnosis being 2 years on average. This just goes to show how important it is for doctors to be well educated in recognising the signs of endometriosis in adolescent girls and adult women.
The authors of this study mentioned another survey of over 4000 women diagnosed with endo. Two thirds of these women said their symptoms appeared during adolescence and that their symptoms were far less likely to be taken seriously when they were young that when they were adults.
After the 25 patients had received surgery it was discovered that 17 had stage I disease, 5 had stage II, 3 had stage II and none had stage IV. These are similar findings to a study published just a few weeks earlier which included 55 girls aged under 19 who were found to have endo. It is also unsurprising to find that no cases of stage IV endo as previous studies also report a very low rate of ovarian endometriotic cysts in adolescents. However, severe stage endometriosis in young women is not unheard of, particularly after the age of 17, and therefore should not be dismissed. An observation made by the authors was that the appearance of endometriosis in adolescents can be different to that of adult women. For example, they noted that the predominant lesion types were subtle atypical lesions like clear, white and red, whereas in adult women surgeons would be more likely to see the darker, blueish-black lesions. This is an important factor that needs to be taken into consideration by surgeons as the subtler forms of endo can be easily missed.
After a 1 year follow up 80% of the patients had improved or resolved pain, however this was a relatively short follow up period and, as different patients received different post-operative treatment, it’s hard to say how this affected the resolution of symptoms.
Nevertheless, this article raises several important issues surrounding endometriosis in young women. In particular how it can present in a different manner, both symptomatically and physically, to endo in adult women and how better characterisation of adolescent endometriosis can lead to quicker diagnosis, better treatment outcomes and an overall lessening of the burden of endometriosis on women and society.