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.
Friday, 14 January 2011
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
Monday, 11 October 2010
Runaround (again)
Firstly I’d just like to apologise for not posting for while, I’ve been busy sorting out my master’s thesis which, thankfully, is all done now so I can get back on with this! So to start here’s an interesting article enquiring as to whether exercise or painkillers are better to alleviate the pelvic pain symptoms associated with endometriosis. Initially it seems like a question common sense could answer, but in fact the study was comparing the effectiveness of painkillers in women who have regular exercise and those who don’t. Their conclusion was that women who exercise regularly find painkillers less effective than those who do not exercise regularly.
Unfortunately I can’t get access to the full article which is tricky as I can’t find out which painkillers each group was taking. After all, if the group who did not exercise were talking stronger painkillers then this might skew the results. Another problem with this study is the sample size. For the analysis of the effectiveness of painkillers the authors only used 14 women who exercised and 33 who didn’t. Although a statistical difference was found between the two groups, we have to think with such small numbers of women, was it really a fair comparison?
It is also important to consider that women with endometriosis who exercise regularly may be able to do so because they experience less severe symptoms than those who may be unable to exercise regularly. There are also socio-economic factors to consider, for example women who are being supported by their partners would have more time to exercise compared to those who have to work full time.
Without having all the details to hand it is hard to judge however, is it right for the authors to conclude “....that taking painkillers might be less effective among endometriosis patients performing regular daily sport activities” with such a small study? What if women with endometriosis who exercise regularly decide not to take painkillers on the basis of this finding when they could have helped? As a scientist you have to be very careful what you say and how you say it, especially if what you say can be fed through, what I like to call, the ‘Out of Context Generator’. This is a machine owned by all media outlets, especially newspapers. Basically, facts are fed into this machine and then sensationalist headlines are spat out that help increase revenue for said media outlet. If we were to feed the above article into this machine we would get a headline something like “Exercise found to be better than Drugs for Painful Womb Condition” (because journalists so love to refer to endometriosis as such).
Unscrupulous pedlars of alternative medicines could use this as ‘proof’ that natural regimes are preferential to drugs forced upon us by evil, faceless pharmaceutical companies. Do you see how a relatively innocuous statement can get out of hand? What can we do to avoid such attempts to confuse us? As Socrates once said “The greatest danger to both the individual and society is the suspension of critical thought ”. Basically don’t be afraid to question whatever you read, wherever you read it, but of course I would be a hypocrite if I didn’t say, don’t take my word for it.
Unfortunately I can’t get access to the full article which is tricky as I can’t find out which painkillers each group was taking. After all, if the group who did not exercise were talking stronger painkillers then this might skew the results. Another problem with this study is the sample size. For the analysis of the effectiveness of painkillers the authors only used 14 women who exercised and 33 who didn’t. Although a statistical difference was found between the two groups, we have to think with such small numbers of women, was it really a fair comparison?
It is also important to consider that women with endometriosis who exercise regularly may be able to do so because they experience less severe symptoms than those who may be unable to exercise regularly. There are also socio-economic factors to consider, for example women who are being supported by their partners would have more time to exercise compared to those who have to work full time.
Without having all the details to hand it is hard to judge however, is it right for the authors to conclude “....that taking painkillers might be less effective among endometriosis patients performing regular daily sport activities” with such a small study? What if women with endometriosis who exercise regularly decide not to take painkillers on the basis of this finding when they could have helped? As a scientist you have to be very careful what you say and how you say it, especially if what you say can be fed through, what I like to call, the ‘Out of Context Generator’. This is a machine owned by all media outlets, especially newspapers. Basically, facts are fed into this machine and then sensationalist headlines are spat out that help increase revenue for said media outlet. If we were to feed the above article into this machine we would get a headline something like “Exercise found to be better than Drugs for Painful Womb Condition” (because journalists so love to refer to endometriosis as such).
Unscrupulous pedlars of alternative medicines could use this as ‘proof’ that natural regimes are preferential to drugs forced upon us by evil, faceless pharmaceutical companies. Do you see how a relatively innocuous statement can get out of hand? What can we do to avoid such attempts to confuse us? As Socrates once said “The greatest danger to both the individual and society is the suspension of critical thought ”. Basically don’t be afraid to question whatever you read, wherever you read it, but of course I would be a hypocrite if I didn’t say, don’t take my word for it.
Wednesday, 18 August 2010
Depression Survey Results
At the beginning of the year I started a small study, the main reason for this was that I found myself frustrated at the lack of information about the effects of depression on women with endometriosis. So I came up with this study and have not long finished writing up the report. There are some interesting findings in there which I hope my readers will also find informative. Anyway it’s all explained in the report which you can download (in the form of a PDF) from the link at the end of this post.
http://www.mediafire.com/?nzwy1jljicj1mxm
http://www.mediafire.com/?nzwy1jljicj1mxm
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