Wednesday, 26 January 2011

Tick, Tock, Tick, Tock

Those of you with a better memory than mine may remember a post from July last year about the cost of endometriosis in terms of lost work hours. Well since then some more information has come to light and I’ve been doing some calculations. Specifically, how much loss of earnings can be attributed to endometriosis? I therefore apologise for the mathematics that follow, but rather than just shout numbers, I’d rather go through the sums with you (mostly because if I’ve made a mistake or my logic is flawed you can chastise me in the comments).

So let’s get started, first off I’ll be concentrating on the United States as there is more data available from there. How many women have endometriosis in the U.S? The short answer is simply ‘we don’t know for sure’ but we can take an educated guess. It is universally stated that endometriosis affects around 10% of women of reproductive age (i.e. between the ages of 15-65 years old), so how many women of reproductive age are there in the U.S? According to the U.S Census Bureau there were 102,161,823 women of reproductive age in 2008. To estimate the number of women with endo we need 10% of 102,161,823 which is 10,216,182.

Now we need to know how much endo is costing each woman, according to the WERF study last year each endo sufferer loses an average of 11 hours per week, so that’s 572 hours per year. According to the U.S Bureau of Labor Statistics, the average female wage was $20.90 an hour in 2009. So, in order to approximate how much loss of earnings can be attributed to endometriosis we calculate:

(Number of women with endo) X (Number of hours lost per year X Average wage per hour)
(10,216,182) x (572 x 20.90) = $122,132,416,160 per YEAR

Or to put it in slightly more sensationalist terms $3,971 per SECOND

Now, seeing as most of the money people earn goes back into the economy in the form of tax and spending, can the U.S government afford to ignore endometriosis in such times of economic uncertainty? It may be worth asking your local representative. Investing more money into treatments and diagnosis for endometriosis is a directive that can be ill ignored by any government.

Now I must point out that these numbers are just estimates based on the information available so don’t go quoting them as fact, the real cost could be lower or higher. Although, as these calculations don’t take into consideration the additional cost of people caring for those with endo, or welfare paid out or the cost to the healthcare system, it is likely to be much higher. Nevertheless it gives us a good idea of what to expect, nearly four thousand dollars a second, tick, tock, tick............

Friday, 14 January 2011

The kids aren't alright

If you have endometriosis, when did your symptoms start? That can be a difficult question to answer as it probably wasn’t something that appeared overnight. A lot of the women I speak to found that their symptoms started when they were in their teens and gradually got worse. With endometriosis it’s never simple though, onset of symptoms is usually just the start of the journey. Often is it the case that symptoms, whilst clearly abnormal, are dismissed as trivial and the suffering continues; and it isn’t just the suffering, but the uncertainty. Despite being told otherwise, you know if there is something wrong with your body but no-one can tell you what it is. Diagnosis is one of the biggest hurdles to overcome for a great deal of women with endometriosis. Most of the sources of information on the subject put the average time to diagnosis at 7 to 9 years (although I met a woman once who told me it took her over 20 years to get diagnosed). You have to ask yourself, would people stand for this sort of delay for cancer diagnosis? Doubtful.

There are several factors at play to create these diagnostic delays; the symptoms of endometriosis can be varied and non-specific, endometriosis is hardly ever considered as the first explanation for the symptoms, and sadly a lot of women find it hard to get taken seriously (“some period pain is normal” being the mantra of the more obtuse members of the medical profession).

The good news is some research is being done to help reduce the diagnostic delay, particularly for young women. A recent study from France found that there were significant differences in the adolescent history of women with Deep Infiltrating Endometriosis (DIE). The study took 229 women who were being operated on for endometriosis and gave questionnaires to the 98 who were found to have DIE. These are the highlights of their findings, women with DIE during their adolescence had:
- Greater family history of endometriosis
- More absenteeism from school during menstruation
- Higher frequency and longer duration of oral contraceptive use before the age of 18
This information can therefore offer markers for DIE in young women. Training medical professionals to recognise these markers could therefore drastically reduce the diagnostic delay for DIE and increased the chances of successful treatment.

DIE is a particularly important type of endometriosis as it is one of, if not the most, painful form of the disease. Studies have shown that DIE has an increased number of nerve fibres present in the lesions which may explain their propensity for generating pain. Additionally, the different pain symptoms associated with DIE can often be explained by the location of the lesion (see the results section of this study ).

Oh, and I apologise for the lateness but I hope you all had a good holiday season and that 2011 is an excellent year for us all.