During my routine scanning of the endometriosis literature an interesting article caught my eye. Here is the abstract for the article, which you will probably notice does not really concern endometriosis (even though it is a keyword for the article). The article concerns uterine leiomyomata (fibroids) and their occurrence in relation to consumption of fish from the great lakes of North America, so this got me thinking and doing a little bit more digging on the subject.
For those like me, who are not native to the Americas, the great lakes are a series of very large bodies of water on the U.S/Canada border. Named Superior, Michigan, Erie, Huron and Ontario, these lakes have several major cities located either on or near them. The trouble is that where there are cities, there’s industry and where there’s industry, there’s pollution. There are probably lots of different types of pollutants that end up in the lakes, however in this case we are going to focus on a particular type, the polychlorinated biphenyls (PCBs).
PCBs are things you definitely don’t want inside your body as they disrupt the endocrine system (your hormonal system) leading to all sorts of unpleasant side effects. The good news is that PCB production has been banned in most countries including the USA (1979) and UK (1981). However, PCBs were still used in these countries and they tend to hang around in the environment for decades (they were also known as persistent organic pollutants). You may, therefore, rightly be wondering if PCBs have been linked with endometriosis. I’m afraid I can’t give you a straight answer on that one yet as nobody seems to have drawn any firm conclusions. There are those studies that say “yes there’s a link”, “oh yes there is definitely a link”, “look, I keep telling you there’s a link there somewhere”. But then there are those studies that say “no link here”, “nope, no link here either”, “seriously, we can’t see any significant link here”. So as far as concrete scientific evidence goes, it’s a resounding shrug of the shoulders followed by a defeatist “I dunno”.
Despite all the contradictory and confusing evidence most agree that PCBs are not good for you, you wouldn’t want them in your water and you sure as hell wouldn’t want them in your salmon fillets. Unfortunately that’s exactly where these PCBs may end up (if you live on the great lakes and eat the fish from there). PCBs are man-made compounds that had a number of uses in industry such as lubricants, hydraulic fluids, plastics and adhesives and it’s an inevitable fact that some ended up getting into the environment, and stayed there. A few studies have found PCB pollution in the sediment of Indiana Harbour on Lake Michigan, and subsequently in the salmon of that lake. I’m not just singling out Lake Michigan here either. PCBs have been found polluting most of the great lakes and getting into the human food chain through fish consumption. PCB levels appear to have dropped steadily though between 1996 and 2006, which is no doubt due to a concerted clean up effort in the lakes and certainly a step in the right direction.
Let’s go full circle and get back to the article I mentioned in the first paragraph. That particular study found some evidence that PCB exposure from fish from the great lakes contributes to an increased risk of uterine leiomyomata (Fibroids). Fibroids have been found to be quite common in women with endometriosis and both diseases share similar risk factors. It’s a shame the original study didn’t give more detail on the incidence of endometriosis in the consumers of great lakes fish and it’s a further shame that there is no consensus to whether or not PCBs are linked to an increased risk of endometriosis. Despite all the uncertainty it is still interesting to find some evidence that increased consumption of great lakes fish may lead to an increase in the body burden of PCBs, which in turn may lead to an increased risk of certain reproductive disorders, including endometriosis.
Tuesday, 1 March 2011
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)
Or
(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............
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)
Or
(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 http://www.ncbi.nlm.nih.gov/pubmed/12372446 ).
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.
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 http://www.ncbi.nlm.nih.gov/pubmed/12372446 ).
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.
Wednesday, 15 December 2010
In the news this week
You may have seen, in one of the many news outlets that have reported it this week, that there has been a major story in endometriosis. This is the story concerning the finding of a new genetic locus associated with endometriosis (if you’ve not read it yet, there’s a good report here).
But what does it all actually mean? Well let’s start at the beginning. Several groups of researchers from the US, UK and Australia have been looking at why some women get endometriosis and other don’t. As endometriosis runs in some families the best place to look is at your DNA. Your DNA is like the set of instructions that makes you, and even though you share around 99.99% of your DNA with any other person on this planet each person’s DNA is individual in some way. If you imagine your DNA as a book, it is divided into 23 ‘chapters’ we call chromosomes. In each chromosome we have hundreds, sometimes thousands, sets of instructions for making proteins, each instruction we call a gene. However, the instructions sometimes get corrupted which is what is known as mutation. A mutation in a gene (or set of genes) can cause it to stop working properly which can be bad news for your body as it can lead to cells going haywire and causing disease.
This is what we think happens in endometriosis, mutations occur that make certain cells behave in an unusual manner leading to disease presentation. The only trouble is finding the mutation/s responsible is a daunting task, a task that was taken on by the collaborative research team mentioned above. What they did was to look at the DNA of women with and without endometriosis and look for any errors common only to the women with endo.
What they found was a particular genetic variation on chromosome 7 that was associated with an increased risk of developing endometriosis. The trouble is the variation they found was not in a gene. If we go back to our analogy of DNA being like a book with instructions in, most of the ‘text’ in our DNA book is actually just rubbish that doesn’t contain any useful instructions (what is known as an ‘intronic region’), this is where the researchers found their variation, in a region dubbed, rather unpoetically, rs12700667. However, sometimes variations in these ‘rubbish’ regions can give us clues as to where to look for genes that are involved in endometriosis. For example, the authors of the paper identified two genes of interest, named NFE2L3 and HOXA10, in the abstract. HOXA10 is particularly important in this case as it is a major controller for the development of the uterus.
So what does this mean for endo patients? Well unfortunately it’s unlikely to will lead to any new cures or diagnostic methods anytime in the near future. What it will do though is help us better understand who is at risk from the disease and why is it passed along some family lines.
The original research was published in Nature Genetics, you can buy the full text article or view the abstract free here.
But what does it all actually mean? Well let’s start at the beginning. Several groups of researchers from the US, UK and Australia have been looking at why some women get endometriosis and other don’t. As endometriosis runs in some families the best place to look is at your DNA. Your DNA is like the set of instructions that makes you, and even though you share around 99.99% of your DNA with any other person on this planet each person’s DNA is individual in some way. If you imagine your DNA as a book, it is divided into 23 ‘chapters’ we call chromosomes. In each chromosome we have hundreds, sometimes thousands, sets of instructions for making proteins, each instruction we call a gene. However, the instructions sometimes get corrupted which is what is known as mutation. A mutation in a gene (or set of genes) can cause it to stop working properly which can be bad news for your body as it can lead to cells going haywire and causing disease.
This is what we think happens in endometriosis, mutations occur that make certain cells behave in an unusual manner leading to disease presentation. The only trouble is finding the mutation/s responsible is a daunting task, a task that was taken on by the collaborative research team mentioned above. What they did was to look at the DNA of women with and without endometriosis and look for any errors common only to the women with endo.
What they found was a particular genetic variation on chromosome 7 that was associated with an increased risk of developing endometriosis. The trouble is the variation they found was not in a gene. If we go back to our analogy of DNA being like a book with instructions in, most of the ‘text’ in our DNA book is actually just rubbish that doesn’t contain any useful instructions (what is known as an ‘intronic region’), this is where the researchers found their variation, in a region dubbed, rather unpoetically, rs12700667. However, sometimes variations in these ‘rubbish’ regions can give us clues as to where to look for genes that are involved in endometriosis. For example, the authors of the paper identified two genes of interest, named NFE2L3 and HOXA10, in the abstract. HOXA10 is particularly important in this case as it is a major controller for the development of the uterus.
So what does this mean for endo patients? Well unfortunately it’s unlikely to will lead to any new cures or diagnostic methods anytime in the near future. What it will do though is help us better understand who is at risk from the disease and why is it passed along some family lines.
The original research was published in Nature Genetics, you can buy the full text article or view the abstract free here.
Wednesday, 17 November 2010
On the Origin
Gradually there are more and more people becoming interested in endometriosis these days, which may be largely due to the internet allowing sufferers, researchers and clinicians to communicate effectively and efficiently (the fact that I would’ve been able to write this blog 20 years ago goes some way to prove this point), but endometriosis is not a modern disease, it is a condition that has been around for a very long time. If we take it to its logical conclusion, endometriosis is probably older than humanity itself. The fact that some species of primate, with which we share a common ancestor, can develop endometriosis in captivity suggests the disease is millions of years old (around 25 million years as an approximation).
Earliest accounts of endometriosis date back to Europe about 300 years ago, where it was described as ‘cysts’ in the pelvic cavity then later described in detail by a physician named Von Rokitansky in 1860. And yet throughout the long, sad natural history of endometriosis, it has only been during the last 100 years or so that we have actually gained any practical insight into the disease. Trying to find the origin of endometriosis in 20th century literature is especially difficult as the disease has not always been known as endometriosis.
A recent publication has found that a Canadian gynaecologist named Thomas Cullen was the first to identify the disease under the name ‘adenomyoma’ around 1908. However, it was not until Dr John Sampson started formulating his theories on the pathology of the disease (in particular retrograde menstruation) that it came to be known as ‘endometriosis’ which roughly translates as ‘disease inside the uterus’.
Thus it went from there; the number of papers published on endometriosis research has exploded over the years:
From 69 publications in 1960
To 125 in 1970
To 196 in 1980
To 430 in 1990
To 453 in 2000
To 901 in 2010
In total there are over 17,000 articles with endometriosis as a keyword published to date, a 13 fold increase over 50 years. So the scientific community have sat up, taken notice and are trying to come up with solutions that will hopefully be improving lives in the not too distant future.
Earliest accounts of endometriosis date back to Europe about 300 years ago, where it was described as ‘cysts’ in the pelvic cavity then later described in detail by a physician named Von Rokitansky in 1860. And yet throughout the long, sad natural history of endometriosis, it has only been during the last 100 years or so that we have actually gained any practical insight into the disease. Trying to find the origin of endometriosis in 20th century literature is especially difficult as the disease has not always been known as endometriosis.
A recent publication has found that a Canadian gynaecologist named Thomas Cullen was the first to identify the disease under the name ‘adenomyoma’ around 1908. However, it was not until Dr John Sampson started formulating his theories on the pathology of the disease (in particular retrograde menstruation) that it came to be known as ‘endometriosis’ which roughly translates as ‘disease inside the uterus’.
Thus it went from there; the number of papers published on endometriosis research has exploded over the years:
From 69 publications in 1960
To 125 in 1970
To 196 in 1980
To 430 in 1990
To 453 in 2000
To 901 in 2010
In total there are over 17,000 articles with endometriosis as a keyword published to date, a 13 fold increase over 50 years. So the scientific community have sat up, taken notice and are trying to come up with solutions that will hopefully be improving lives in the not too distant future.
Tuesday, 9 November 2010
A little bit more good news
Some of you may have read that endometriosis is associated with an increase in risk of certain cancers, in particular ovarian cancer. Whilst this is true, it was found that the risk only significantly applies to those with long standing endometriosis (i.e. between 10-15 years) and actual increase in risk is very small (only about 2-5%) after all, we can take some solace knowing that endometriosis is very common but ovarian cancer is not.
But while it may be saddening to hear you have an increased risk of certain cancers (even if the risk is small) perhaps the most important factor is the survive rate. The study I’ve referenced above found that women who have endometriosis and ovarian cancer tended to have their cancer diagnosed at a younger age, which may be beneficial as a good prognostic factor for cancer is early diagnosis.
The issue of survival of cancer in endometriosis patients is the focus of a recent study from Sweden. This study took 4,278 women with endometriosis and some form of malignancy and 41,831 women with malignancy but without endometriosis. The findings were quite encouraging as they found women with endometriosis had a better rate of survival for malignancies in general, but specifically better for breast and ovarian cancer. There was however, a poorer rate of survival for malignant melanoma (but remember, melanoma has excellent survival rates).
So although women with endometriosis have a slightly higher risk of developing ovarian cancer, it would seem women with endometriosis also have a better survival rate, funny how the universe balances out sometimes. Why might this be the case? I’m not completely sure, it may be that women with a chronic health condition like endometriosis are more aware of their health in general and may be more adept at detecting deviations from the norm that signal cancer, thus seeing their doctor sooner and getting treatment sooner. Of course women with endometriosis also see doctors more often, so the likelihood of incidentally discovering cancer earlier is also increased.
But while it may be saddening to hear you have an increased risk of certain cancers (even if the risk is small) perhaps the most important factor is the survive rate. The study I’ve referenced above found that women who have endometriosis and ovarian cancer tended to have their cancer diagnosed at a younger age, which may be beneficial as a good prognostic factor for cancer is early diagnosis.
The issue of survival of cancer in endometriosis patients is the focus of a recent study from Sweden. This study took 4,278 women with endometriosis and some form of malignancy and 41,831 women with malignancy but without endometriosis. The findings were quite encouraging as they found women with endometriosis had a better rate of survival for malignancies in general, but specifically better for breast and ovarian cancer. There was however, a poorer rate of survival for malignant melanoma (but remember, melanoma has excellent survival rates).
So although women with endometriosis have a slightly higher risk of developing ovarian cancer, it would seem women with endometriosis also have a better survival rate, funny how the universe balances out sometimes. Why might this be the case? I’m not completely sure, it may be that women with a chronic health condition like endometriosis are more aware of their health in general and may be more adept at detecting deviations from the norm that signal cancer, thus seeing their doctor sooner and getting treatment sooner. Of course women with endometriosis also see doctors more often, so the likelihood of incidentally discovering cancer earlier is also increased.
Monday, 25 October 2010
Endometriosis and Parkinson’s disease
There’s not usually much good news when it comes to endometriosis, so I know what some of you may be thinking “Oh no, he’s going to tell us we’re more likely to get Parkinson’s if we have endometriosis” well, you shall be pleasantly surprised to hear that, in fact, I’m going to report the opposite. Well, ok it’s not quite the opposite, but a current study has found that women with endometriosis are no more likely to develop Parkinson’s than those without endo.
The study was carried out by the Boston University School of Medicine and took 12,093 Parkinson’s patients from the Danish National Registry of Patients. The authors then looked at what other estrogen related diseases these women had been diagnosed with before Parkinson’s. It may be news to some of you, it certainly was to me, that estrogen exposure has been associated with Parkinson’s. However, whereas an increase in estrogen exposure is suspected as a causative factor for endometriosis; endogenous (that is, the body’s own) estrogen is thought to be protective against Parkinson’s, this may be the reason that men are more at risk of developing Parkinson’s than women.
Parkinson’s disease is a progressive neurodegenerative disease. That is to say it is a disease that causes loss of brain cells leading to problems with movement, which gradually gets worse over time. It is a disease that usually affects older people (61 is the average age of onset in the U.S). Like endometriosis there is no single cause for Parkinson’s, which currently cannot be cured, but can be treated. Some of the early signs of Parkinson’s are:
- Difficulty/slowness/stiffness of movement
- Dementia
- Speech changes
- Difficulty chewing/eating
- Changes in mood or sleeping patterns
If you’d like some more information on Parkinson’s follow the link below for some good information
http://parkinsoninfo.org/more_info.asp
The study was carried out by the Boston University School of Medicine and took 12,093 Parkinson’s patients from the Danish National Registry of Patients. The authors then looked at what other estrogen related diseases these women had been diagnosed with before Parkinson’s. It may be news to some of you, it certainly was to me, that estrogen exposure has been associated with Parkinson’s. However, whereas an increase in estrogen exposure is suspected as a causative factor for endometriosis; endogenous (that is, the body’s own) estrogen is thought to be protective against Parkinson’s, this may be the reason that men are more at risk of developing Parkinson’s than women.
Parkinson’s disease is a progressive neurodegenerative disease. That is to say it is a disease that causes loss of brain cells leading to problems with movement, which gradually gets worse over time. It is a disease that usually affects older people (61 is the average age of onset in the U.S). Like endometriosis there is no single cause for Parkinson’s, which currently cannot be cured, but can be treated. Some of the early signs of Parkinson’s are:
- Difficulty/slowness/stiffness of movement
- Dementia
- Speech changes
- Difficulty chewing/eating
- Changes in mood or sleeping patterns
If you’d like some more information on Parkinson’s follow the link below for some good information
http://parkinsoninfo.org/more_info.asp
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