Endometriosis Update

Why Eating Turmeric will treat your Condition, and why you shouldn’t believe what I Just Said

2012-01-19T20:45:00.004Z

If you’ve ever read a newspaper or watched the news over the last decade, chances are you’ve come across stories declaring that some everyday food has been elevated to the status of ‘superfood’. This is then quickly proceeded by a number of celebrity endorsements, fad diets and a sharp incline in the price of said foodstuff. Some such superfoods include: blueberries, tomatoes, spinach, broccoli, hemp seeds, onions, salmons, the list goes on and on, but what exactly has exalted these mere pedestrian groceries to the level of godlike, divine ambrosias?

It’s usually that some journalist has gotten wind of a scientific study that has shown a component of a particular foodstuff has been shown to have a beneficial effect on a certain disease or condition and, rather than wait for more evidence to come to light about the true value of this research, said journalist now declares this food to be hewn directly from the allotment of Zeus himself, a panacea to cure all the world’s ills. It doesn’t matter that these journalists never have any scientific training and lack the skills required to properly appraise scientific data because there are papers to sell dammit!

Mostly news outlets like to make a song and dance about superfoods treating cancer, but endometriosis is no exception to the journalist’s flights of fancy. A prime example came back in 2008 when UK newspapers the Daily Mail and the Times proudly honked ‘Eating tomatoes could help fight a painful womb condition that affects 2 million women in the UK’. Wow! You must be thinking, let’s all go out and stuff our faces with tomatoes until we are literally red in the face. That’s the impression the headline gives, but if you actually read the article it becomes quickly apparent what they actually mean is that there is some evidence that suggests a component of tomatoes (lycopene) reduces some of the factors found in adhesion tissue grown in the lab. Ok so that’s nothing like what the headline was claiming, but let’s have a look at the original research to see what they found. According to the Mail this research was carried out by “Dr Tarek Dbouk, a researcher at Wayne State University in Detroit, Michigan”, being as this research was conducted in 2008 the subsequent publication should now be easy to find on one of the main professional citation databases, except it isn’t, in fact it doesn’t seem to exist. The only reference to this research I can find comes from the very newspapers that claimed it existed in the first place!

So what happened? Did the newspapers simply invent the story? Probably not, this was likely based on some real research that was being carried out, but that research was either found to be flawed (and hence never professionally published), or abandoned because, on closer inspect, the results weren’t as good as they previously thought. Either way, because the journalist responsible for this article was incapable of doing proper scientific investigation, thousands of people reading this story were given completely false information and false hope.

You may be wondering why I’m venting my spleen about a story that happened in 2008, well it’s because I can see something similar happening soon, and I’d like to pre-empt the media’s slash and burn attitude to science this time. Here’s what I’m talking about – there’s been some evidence recently in the scientific literature concerning the potential effect of curcumin, a compound that can be extracted from the spice turmeric and how it could have positive effects on endometriosis.

This stuff

So, before someone decides to write, in a national newspaper, about how turmeric is a wonder spice and if you eat enough of it your symptoms will magically disappear, I thought I would interject and get to the truth of the matter. There have been three studies investigating the effect of curcumin on endometriosis last year, and here’s what they found.

The first study was published in January 2011, from a research team in China. This team was looking at the effect of curcumin on the development of blood vessels in endometriotic implants. To do this they took several rats and surgically induced some to develop endometriosis. They then divided the rats into groups. One group would receive no treatment, the other three groups would receive either a low dose (50mg/Kg), medium dose (100mg/Kg), or high dose (150mg/Kg) of curcumin injected directly into the gut. After a while the rats were killed and the development of blood vessels around their endometriotic lesions was measured. Interestingly, rats which received the higher doses of curcumin had significantly less blood vessel development around their implants than those who had a lower dose or who were untreated. So does this mean you should all go out and start putting turmeric on your cereal? Hopefully not, especially when we consider the doses involved. Consider the following; in the study rats were given doses of 150mg per Kg max. If you were an average sized human female (about 60Kg) that would mean you’d need 9000mg of curcumin for an effective dose. Now, turmeric only contains 3.14% curcumin, so you would need to eat 286,624mg (287g approx) of turmeric in one go. That is a lot of spice and would probably make you very ill, but of course I’m being facetious, you can buy curcumin tablets however the amount you would need to take every day would leave you rattling like a bag of coins (and probably put you in the poor house).

The second study, published in December 2011, by a research team in India was looking at the effect of curcumin on the invasive potential and survival of endometriosis. This research used methods very similar to the one mentioned above, except this study used mice instead of rats and injected the curcumin directly into the peritoneum in doses of 12, 24 and 48mg/Kg. Another difference in this study was that they injected the curcumin before surgically inducing endometriosis in the mice. This was to show whether or not the curcumin doses had any effect on the survival and invasion of the endometrial tissue. The results of this study showed that curcumin appeared to cause regression of the endometriotic implants. However, an issue here is that the curcumin was administered before the endometriosis developed. Whether or not curcumin has any affect on well established endometriosis is an issue that needs to be addressed. Nevertheless, this study does make me wonder whether some sort of curcumin treatment could be used to prevent the recurrence of endometriosis after surgery.

Another issue is that of using rats and mice as ‘models’ for human endometriosis. The problem is mice and rats don’t spontaneously develop endometriosis like apes and monkeys so the disease may behave very differently in these creatures compared to humans, particularly as rodents have an oestrus cycle rather than a menstrual cycle. Women with endometriosis also have alterations to their immune system that probably go hand in hand with endometriosis, modelling this in the rodents would be extremely difficult. Whilst there are drawbacks to using animals, they are the best method we have to study the disease in a living creature, which offers so many more insights into endometriosis than any other method we currently have (other than experimenting on humans, which, quite frankly, probably wouldn’t go down well!).

The last study, also published in December 2011, was from a research team based in Korea and examined how curcumin affected the release of different factors from endometriotic cells. This study used endometriotic cells, surgically removed from women with endometriosis, and grew them in a lab, then added the curcumin and watched what happened. This method is more simplistic than the other studies mentioned above, but it gives a better idea about what curcumin does at the cellular level. The results of this study showed that curcumin hindered the ability of endometriotic cells to produce several factors known to be involved in inflammation. Previous studies have shown that curcumin is effective as an anti-inflammatory agent and this may be good news for women with endometriosis because inflammation is thought to play a significant role in how the disease causes pain.

So what can we say about curcumin and endometriosis? Well, nothing really conclusive at the moment. The studies that have been done so far are definitely encouraging but there are still the problems of dosage, cost and effectiveness in humans. If more research is done along this avenue then maybe curcumin therapies would be beneficial for women with endometriosis, but it would be nice if someone proved it before promoting it.

The ENDOCUL Study

2012-01-10T22:30:00.000Z

Well it’s the first post of 2012, so first off I’d like to wish all my readers a very happy new year despite it being two weeks late. I’ll also start off the New Year with a post about a study that took place in my university last year. This study was carried out with women in the UK and aimed to investigate the different experiences of endometriosis of women from different ethnic backgrounds.

You can read all about the way in which the study was conducted and the key findings, here. It makes a quite interesting read to see how women from other cultures view the disease and its treatment. Of course the study could only look at a small subset of women from a handful of cultures, so it would be very interesting to expand this study to more women from an even more diverse set of backgrounds.

One of the outcomes of this study was that it led to the creation of tailored resources for women of different ethnic backgrounds, specifically several videos especially for women from Afro-Caribbean, Indian, Pakistani, Chinese and Greek backgrounds with narration in their native language. I’ve actually spoken to the leader of this study from my university and discussed the possibility of expanding these resources for even more languages (e.g. Arabic, Nigerian, Spanish, Portuguese, etc) so watch this space!

A presentation was also produced aimed at healthcare providers, but I would highly recommend it to anyone interested in seeing endometriosis from another viewpoint.

Making these resources available online is essential in our information age. The advent of the internet has allowed dissemination of our knowledge at a speed hitherto unknown throughout all of human history; and whilst this has led to some remarkable leaps forward in technology and science, it also means that inaccurate and potentially harmful information can be spread faster than ever before. This is increasingly true for women in third world countries or from underprivileged backgrounds that may not have access to reliable information in their own language.

I know even in developed countries women are fed a whole heap of misinformation about endometriosis, often from health professionals, but for English speakers doing your own research, finding and joining support networks has never been easier. It must be even more difficult for women in poorer countries, where health care is basic, misunderstanding is common and support is impossible to find. Therefore, if you happen to know someone who is a native speaker of one of the languages included in this study and you think they would benefit from hearing what the video has to say, forward it to them and let’s erode the misunderstanding about endometriosis, one person at a time.

Endometriosis in an 18 month old infant

2011-12-01T20:10:00.001Z

This month appears to be the month for rarities, a few days ago I was reporting on the case of endometriosis in a man and just today a case report from Hong Kong was published on something even rarer, ovarian endometriosis in an 18 month old girl. This alone would be enough to raise an eyebrow, but what made both my eyebrows almost fly off my forehead was that this girl also had an endometriosis-associated ovarian tumour.

It has been known for ovarian endometriosis to be associated with an increase risk of developing tumours of the ovary, but this in itself is a rare event and to find this occurring in an infant means the odds of this occurring must be astronomical.

This isn’t the first case of endometriosis in a pre-pubertal girl I’ve heard of; there have been documented occurrences of endometriosis in girls aged as young as 8 years old and I’ve wrote about several publications from Italy concerning the discovery of endometriotic tissue in unborn human foetuses. But ovarian endometriosis associated with ovarian tumours is something which is more often reported in older women with advanced stage endometriosis.

So it concerns me greatly how this could have occurred in an 18 month old infant. The authors of the case report state that the girl’s hormone levels were normal for someone he age and there was no evidence of precocious puberty or genital abnormality. Perhaps this girl had a particularly disproportionate genetic or epigenetic susceptibility to endometriosis, in which case further investigation along this line may answer some of our most long standing questions about which genes (or gene variants) make someone more at risk of developing endometriosis.

It could be hat this girl had been exposed to high concentrations of some environmental pollutant, either whilst still in the womb or during early development which triggered onset of the disease. Hong Kong is a heavily industrialised urban area with a serious pollution problem, so exposure to pollutants could be a contributor to this rare occurrence; it really is very hard to draw any definite conclusions though.

Whatever the cause of this particularly peculiar event, it highlights how little we know for certain about endometriosis. With the growing body of research on the disease, scientists involved in endometriosis need to take a step back and have a long hard look at the current state of our understanding because, personally, I think a radical shift in our thinking is needed.

The Art of Endometriosis

2011-11-29T21:26:00.003Z

They say that suffering inspires creativity, after all some of the most notable artists from any time period you care to mention have drawn on their own personal tragedy when composing some of the greatest works to grace the halls of our museums and galleries. Of course, if it were true that suffering is indeed the well from which creative genius is drawn, then women with endometriosis would have contributed more to the cultural development of humanity than all the other artists, philosophers, musicians and playwrights combined.

Nevertheless, endometriosis can be a source of inspiration for people of all walks of life; for instance, I can say that personally the disease has inspired me to research and understand it in as greater depth as possible (because the first rule of war is “know your enemy”).

Some have used their experience with endometriosis to generate creative works; for example, poetry like that by Belle Browne and Roberta Speyer, paintings such as those by Adelaide Damoah and even organising events based around art to raise money for endometriosis research and awareness, like the ‘Art for Endometriosis’ event in 2009.

Some have even suggested that art therapy may be of use to women with endometriosis. Mostly as a means of expressing how you feel about the disease or even helping to work through anxiety, fear and even grief associated with the disease. Whatever your feelings may be I would still encourage you to embrace your inner artist, be it through writing down how you feel or expressing it with a pencil, paintbrush or digital media. Even if, like me, you’re not going to be invited to repaint the ceiling of the Sistine Chapel anytime soon, you still might surprise yourself (in a good way!).

So in the spirit of joining in I fired up my newly acquired version of Photoshop and did a few bits of official Endometriosis Update artwork. (Click on the thumbnails below for the full version)

Happy creating! And if you do decide to make some endo art (or any other art for that matter) and want to share it, feel free to post a link to it in the comments.

There’s something you don’t see everyday

2011-11-24T20:31:00.001Z

Endometriosis in a man. Yep, thats right, it is an incredibly rare occurrence but it has been known to happen. This, particularly detailed, report comes from Japan and concerns a 69 year old man who had been undergoing estrogen therapy for 9 years to treat prostate cancer. In the abstract no account of the symptoms are given, but it does state that the man was found to have a series of endometriotic cysts measuring approximately 5x3cm in the left paratestis (the region just above the testicle).

The authors state that this may have occurred due to, what is known as, endometriotic metaplasia or stromal hyperplasia. Basically, what both of these terms mean is that, under the influence of increased estrogen levels, the normal tissue has undergone a change into a different tissue type.

This case report isn’t the first to observe endometriosis in a man; it’s not even the first report of it occurring in this area of the body.

Other than that there have only been six other cases of male endometriosis reported in locations such as the bladder, prostate and lower abdominal wall. However, if we look at all of these cases, most of them have one thing in common; they have been undergoing long term estrogen therapy for the treatment of prostate cancer. This is quite important, as unusual presentations of a disease can often give us clues as to how it arises in women.

One of the reports of male endometriosis was from a young man aged 27 who was otherwise completely healthy, very different to the other reports which are mostly much older men with prostate cancer. So not only was this an unusual presentation of endometriosis, it was an unusual, unusual presentation, if that makes sense. So what can this tell us about the disease as a whole?

The authors of this report looked to the very beginning of the development of the reproductive organs. Whilst still only a developing embryo, there are different structures that will form the male and female reproductive systems (there’s a nice illustration here). The female organs develop from the müllerian duct which in male embryos regresses because the embryo produces the imaginatively named müllerian inhibiting substance (MIS). The authors of this report suggest that exposure to certain environmental toxicants (such as diethylstilbestrol or other hormone disrupters) whilst the embryo is still developing, may lead to abnormal production of MIS which in turn stops the müllerian duct regressing properly, leaving small remnant patches of tissue that could, given the right stimulus, develop into endometrial like tissue, which would appear as endometriosis.

Could something similar explain endometriosis in women? Well there could be if this ties in with the theory of mullerian rest. This theory states that during normal foetal development, tiny parts of the mullerian duct, perhaps only a few cells, get displaced and deposited on other organs. Once there, the displaced deposits do nothing until stimulated to transform into endometriotic tissue later in life. What these exact stimuli are, or why some women experience this displacement are mysteries, as yet, unsolved, but answering these questions may be a defining moment in the history of endometriosis.

Thinking outside the box

2011-11-21T20:13:00.002Z

When you look back at the history of science, you'll notice that it is heavily punctuated by radical ideas to solve complex problems. Some of these radical ideas have lead to changes that shaped and changed the world, others not so much. For example, American doctor Jonas Salk saved the lives of millions and practically eradicated the disease polio in the 1950s by injecting people (including himself and his own family) with ‘inactive’ versions of the polio virus; a hefty risk that paid off. Other medical cures haven’t proved quite so successful. For example, there is the sad case of Alan Turing, a brilliant British scientist without whom you would not have the computer you are reading this on now. Around the same time Salk was developing his polio vaccine Turing was convicted of being a homosexual (a custodial offence in the UK at the time) and rather than face prison he was forced to undergo estrogen injections to ‘cure’ his homosexual urges. The side effects were, of course, horrific and not long after he committed suicide by taking a bite from an apple laced with deadly cyanide (some people speculate the logo for Apple computers pays homage to Turing).

Obviously those are two very extreme examples, but they set the scene for the topic of this post, which is radical thinking in science, especially in relation to endometriosis.

Endometriosis is complicated, no matter what your views on the origin, treatment or mechanism of the disease; we can all agree it is complicated. In order to solve a complex problem, no matter what it is, people have come up with many different possible solutions and endometriosis is a shining example of that. There are so very many different types of treatment for the disease, from established treatments like the multitude of hormonal therapies and surgeries, through alternative medicine all the way to cutting edge technology like gene therapy.

But the field is always progressing, as scientists we are always researching and doing experiments to try and solve complex problems and sometimes the ideas that are borne of these experiments can seem a little different or unusual at first.

Take, for example, this piece of research by a group from Turkey. This group induced endometriosis in rats and then divided them into two groups. One group of rats were left to get on with their business without any interventions (a control group), whilst the other group was placed in hyperbaric oxygen therapy (HBO) for two hours a day over 6 weeks. So what is hyperbaric oxygen therapy? Basically it involves the subject being placed in a chamber which contains pure oxygen which they breathe for a period of time. This isn’t a new treatment either; it’s been used for a long time to treat all sorts of conditions, from sports injuries to carbon monoxide poisoning and even alleviate the side effects of radiotherapy, but never as a possible treatment for endometriosis (for more on HBO follow this link). Below is a picture of a HBO system used for humans.

Source: http://mdmedicine.wordpress.com/2011/04/10/what-is-hyperbaric-oxygen-therapy-hbot/

Anyway, back to our original study. The results of this study showed that endometriotic implants of rats receiving HBO had decreased in size compared to the implants from the control group. There was also a marked decrease in markers of inflammation in the HBO rats. Essentially endometriosis in the HBO rats had gone into remission. So why might his be the case and where do we go from here? Well, HBO is used for the purposes I mentioned above because it encourages wound healing and also helps boost the immune system, so it could be that the HBO therapy is helping the body destroy the endometriotic implants. Despite this being an animal based study (which means it may not work the same in humans) this is still an encouraging result as HBO therapy has no serious side effects and is overall very safe. Because of this, in the future it would be easy to test HBO therapy on human subjects with endometriosis to see if it could help recovery from surgery or reduce symptoms.

Whilst I’m not anticipating hyperbaric oxygen therapy will be a cure for endometriosis, the type of thinking that the authors of this study were doing will eventually lead to a cure. By that I mean in science it is important to step out of one’s comfort zone occasionally, take risks, think of the radical ideas no-one has thought of before but be prepared to be proved wrong and always be held accountable. It is only by embracing what is new and being fearless in our approach that means we will, one day, find a cure for endometriosis.

A Recurring Problem

2011-11-08T21:20:00.001Z

One of the problems with a disease like endometriosis is that, because our understanding of the disease changes over time, the things that we hold as true today may turn out to be inaccurate, misunderstood, or just plain wrong in the future. For example, it used to be thought that endometriosis was a problem reserved almost exclusively for women in their 30’s, ‘career women’ as they used to say. There never seemed to be any rationale for this, no reason as to why women of this age appeared to be more at risk, it was just accepted, most likely because the shared experience of many people in the field led them to that conclusion.

However, this perception seems to be radically shifting, especially over the last five years or so. Nowadays it is becoming increasingly recognised that cases of endometriosis are rising higher and higher in younger and younger women, particularly girls in adolescence (case in point, there was a recent report of an 11 year old girl diagnosed with an endometrioma). If we look at the literature we can see that in the last 10 years there have been 526 articles published containing the keywords ‘endometriosis’ and ‘adolescent’. Compare that to the previous decade there were only 278 articles published.

So why might this be the case? Is there some evidence to suggest young women are becoming more susceptible to the disease? Or is it that increased awareness, both in the medical and public environment, leads to women getting their symptoms investigated seriously at a younger age? I know that the average time until diagnosis stands at a completed unacceptable 7-9 years (depending on who you talk to) and I also know that many, many women have to struggle to get their symptoms taking seriously in the first place, so the age at which a woman is diagnosed cannot be used as an indicator for when the disease first appeared. This is probably where the whole idea of endometriosis being a disease of women in their 30’s came from; because that was the age they were being diagnosed, not the age at which the disease/symptoms appeared.

Have you ever watched a horror film where the protagonist goes into a room, expecting to find a nasty surprise, only to find the room is empty? They feel a huge sense of relief, turn around to walk away and then a monster jumps out of the shadows, in the process lifting you several feet off your chair, well endometriosis is kind of like that monster. Because even if endometriosis is removed surgically, and we all breathe a collective sigh of relief, it can still be waiting in the shadows. This study from Italy exemplifies the recurrent potential of endometriosis with its finding that approximately 1 in 5 women undergoing laparoscopic surgery for endometriosis experienced recurrence of the disease. Further studies looking at a wide range of literature found that recurrence of endometriosis after surgery can be as high as 21.5% after 2 years and 40-50% after 5 years. At the moment we don’t have a good idea why recurrence should be this high. Certainly the skill of the surgeon and the quality of equipment used play a big part, but whether there are other factors that could influence the recurrence of endometriosis, such as lifestyle factors, medication or genetics, remains to be shown.

The reason I’ve been talking about endometriosis in younger women and the recurrence problem is that there has been a paper published recently combining those very subjects. This study, also from Italy, took 57 girls under 21 who had been diagnosed with endometriosis and followed their medical history over the next 5 years. Out of the 57 girls that enrolled in this study, 32 (56%) had a recurrent diagnosis of endometriosis. Of these 32 girls with a recurrence, 11 had further laparoscopic surgery to treat the disease. The authors of this study found that factors such as: symptoms, stage/site of disease, type of surgery, medical treatment did not influence who got a recurrence and who didn’t.

The recurrence rate of endometriosis in these young girls is very high, well over half of the girls treated experienced either a recurrence of the disease, or of their symptoms. But the million dollar question still remains, why?

I have no definitive answer, but I know that endometriosis can be an insidious disease. Tiny patches of endometriosis can evade the eye of even the most skilled surgeon and from these seeds, the vicious thorns of the disease can flourish. In the future better methods for visualising the disease may vastly increase the ability of a surgeon to remove all of the disease. Until that time though, for some people, endometriosis will be a recurring problem.

A free e-book on pelvic pain

2011-10-11T12:42:00.004+01:00

This month seems to be the month for free online books. This time its an e-book on pelvic pain, which I know will be relevant to many of my readers, by Dr Susan Evans and Ms Deborah Bush.

Topics covered include:

Period Pain

Endometriosis

Bowel and Bladder pain

Painful Sex

Fatigue and more

To download the book follow this lin

http://www.drsusanevans.com/e-booklet.html

and click on 'Click here to download'

Free online book on heavy menstrual bleeding

2011-10-06T21:49:00.003+01:00

This may be of interest to some of my readers, but I noticed that the National Collaborating Centre for Women's and Children's Health and the National Institute for Health and National Institute for Health and Clinical Excellent have published their guidelines for the assessment and treatment of heavy menstrual bleeding (HMB), a problem that can affect women with endometriosis.

To read the guidelines in their entirety follow this link

http://www.ncbi.nlm.nih.gov/books/NBK56536/

and click on ‘PDF version of this title’ in the right hand margin

Although the guide is aimed more at clinicians, I think it contains a lot of relevant and interesting information for patients who suffer with heavy menstrual bleeding. The guide covers such topics as:

How we define HMB

The risk factors for HMB and its prevalence

How doctors should assess and test for HMB

Education for women about HMB

Medical and surgical treatments for HMB

Although these guidelines have been drawn up for the use in the UK, the evidence upon which the guidelines have been based was taken from international studies and are applicable to women all over the world.

Highlights from the WCE 2011: Part 2

2011-10-06T21:41:00.001+01:00

Another set of interesting bits from the World Congress on Endometriosis 2011, so let’s get started with...

S. Banerjee from St Peter’s Hospital, Chertsey, UK (S#2-5) presented their work entitled

Identification of non-invasive markers of peritoneal deep infiltrating endometriosis in women with chronic pelvic pain.

The aim of this study was to record the symptoms and clinical observations of a group of 401 women with chronic pelvic pain. These women would then go for diagnostic laparoscopy to find the cause of their pain, then the results from the pain surveys and observations would be analysed to show if there is any difference between women with different diagnoses.

After the laparoscopies 167 women (42%) were diagnosed with deeply infiltrating endometriosis (DIE), 150 (37%) were diagnosed with superficial endometriosis and 84 women (21%) were found to not have endometriosis as the source of their symptoms. So, the focus of this study was to look at the difference in demographics and symptom profiles of women with DIE and compare it to women with superficial endometriosis to see if there were any significant differences that may help identify DIE before diagnostic surgery. This is how those factors broke down: women with DIE were on average 31 years old compared to 33 years old for those without. Dyschezia (painful bowel movements) throughout the month, a clinically immobile uterus, a palpable nodule, and the presence of an endometrioma (ovarian endometriotic cyst) were all more common in women with DIE. Interestingly, the authors then quantified the risk; so if all the above factors were present in one woman from this group, this raised their chance of being diagnosed with DIE from 42% to 82%. Conversely if all the above factors were absent it decreased the chance of them being diagnosed with DIE to 10%.

In conclusion this study will hopefully allow gynaecologists to identify women who have the highest chance of being diagnosed with DIE from the features of their pain symptoms and clinical observations, which in turn should make it easier for surgeons to know what they are looking for.

M.Takamura from University of Tokyo, Japan (S#4-1) resented the results of their study entitled

Probiotics inhibit the growth of endometriotic lesions in a murine model

You’re probably aware of some of the various commercial probiotic yoghurts and drinks available on the market at the moment, I must confess I have a probiotic drink myself with breakfast (it’s an acquired taste, I’ll tell you that much). Basically these products contain live bacteria that are supposedly beneficial to ones digestive system, if the marketing is to be believed. According to the authors of this study, these probiotics are recently gaining attention due to their ability to modulate the immune system in a favourable manner. This got the authors thinking that, due to the many immune system abnormalities associated with endometriosis, perhaps these probiotics may illicit some beneficial effects against the disease.

The way in which they studied this was to use a murine (mouse) model of endometriosis. Basically this involves surgically inducing endometriosis in a mouse. Now, although I’ll not go into detail about the positives and negatives of animal models, I will say though that despite the fact mice make excellent animals in which to model diseases and have a large amount of similarities to humans in more ways than you’d expect, in terms of modelling reproductive diseases, mice don’t have a menstrual cycle and have a distinctly different reproductive systems to humans so the true value of using mouse models may be someone questionable. Nevertheless it is one of the best tools we have, so until better comes along, we’re stuck with mice.

The authors then administered various doses of probiotics (containing such inventively named bacteria as L.acidophilus, L.casei, Bifidobacterium bifidium and Streptococcus thermophilus) to different groups of mice and noted any effects they had on the size or number of endometriotic lesions. Overall, the results of the study showed that mice receiving oral doses of the aforementioned probiotics suppressed the development of endometriotic lesions, reducing the size/growth, but not the number, of lesions. The authors note that, if this treatment works in a similar manner in humans, that fact that it causes no alteration to hormone levels may be beneficial for women.

G.M. Buck Louis from National Institute of Health, Rockville, USA (S#4-5) presented work from their collaborative research group entitled

Persistent organic pollutants and endometriosis: importance of biologic media for defining exposure – the endo study.

Now, talking about the relationship between endometriosis and environmental pollutants is opening a rather large can of worms because there are arguments both for and against the involvement of environmental pollutants in endometriosis. The arguments ‘for’ work on the premise that the mode of action of a lot of pollutants should increase the likelihood of developing endometriosis due to their ability to mimic estrogen and negatively affect the immune system in the human body. The arguments against rightly point out that the evidence supporting the role of pollutants in endometriosis is sketchy at best and, at present, does not prove any links between pollutant exposure and increase endometriosis risk in humans.

This study has obviously aimed to address some of the issues surrounding previous studies and provided a study with, from what I can see, is an extremely comprehensive methodology (which I’ll not go into here as it will take up too much space and may induce sedative effects). The study took women from 14 clinical centres undergoing laparoscopy or MRI for the diagnosis of endometriosis, then gave them questionnaires and took samples of blood, urine and fat and analysed the levels of various pollutants in these samples. The important difference to this study was the inclusion of analysing fat samples from women. Previous studies frequently use blood for analysis, but the problem with that is pollutants are transferred from the blood and accumulate in fatty tissue around the body, so sampling fat would be a much better indicator of pollutant exposure.

The results showed that the levels of several polychlorinated biphenyls (PCBs) and hexachlorobenzene were significantly higher in the fatty tissue (but not blood or urine) of women with endometriosis. This further highlights the importance of selecting the correct biological sample when looking for relationships between environmental pollutants and endometriosis. It also adds weight to the argument supporting the role of environmental pollutants in the development of endometriosis, how exactly these pollutants elicit their effects remains to be conclusively proven.

Highlights from WCE 2011: Part 1

2011-09-24T17:22:00.001+01:00

As I mentioned briefly in my last post I attended the 11^th world congress on endometriosis in Montpellier a few weeks ago. It’s a tough life having to travel to beautifully picturesque Mediterranean cities, but hey, somehow I managed to cope. The main body of the conference was run over three days where experts from all over the world presented their latest research and shared up to date knowledge about endometriosis. If you would like to see the whole program for the conference you can download it here. All in all it was a very enlightening few days, but don’t worry if you couldn’t make it yourself because over the next few weeks I’ll be posting highlights from the conference. Unfortunately, I can’t post about everything that was discussed because it would probably take more years to write than I will live, so I’ve gone through the different talks and posters and picked out the ones that I hope you’ll find the more interesting. I’ll start off with the oral presentations that were given then move onto the posters that were presented. I’ll also give a bit of my own interpretation of the science, but I won’t be doing much critical appraisal. So without further ado, let’s jump straight in.

R.S. Bevan from the Brighton and Sussex Medical School, UK (S#1-3) presented their work entitled ‘Alcohol consumption and endometriosis: A multi-centre, case-control study’

This study took 1,418 women from 10 countries that were undergoing laparoscopic surgery for either suspected endometriosis or tubal ligation. After surgery the main group were divided into three groups: Those who were found to have endometriosis (745 women), those who had symptoms but no disease was found (565) and those women undergoing sterilisation who had neither symptoms nor endometriosis (86). These women were asked to complete a questionnaire which gave included questions about alcohol consumption.

The results of this study showed that alcohol consumption between the three groups of women did not significantly vary. Although there is still more analysis of this data to be done it is still interest to see these preliminary findings. I think there may have been some expectation that alcohol consumption may be increased in women with endometriosis, perhaps due to the fact alcohol can give pain relief, so the results are interesting from that pint of view. There was also some discussion as to whether alcohol consumption increases the risk of endometriosis. I’m not sure whether or not this is folly. Mainly because the symptoms of endometriosis tend to begin around adolescence, but alcohol consumption doesn’t even seriously start for most people until their late teens, so I’m sure whether there could really be any connection between the two.

S.A. Missmer from Havard Medical School in Boston, US (S#1-4) presented their work entitled ‘Vitamin A and endometriosis risk: A prospective cohort study’

This study analysed consumption of different micronutrients in 1382 women with laparoscopically diagnosed endometriosis. What this study found was that increased consumption of vitamin A seems to reduce the risk of endometriosis. Or rather, I should say, reduced the risk of being diagnosed with endometriosis. These investigators reported a 21% reduction in risk of diagnosis of endometriosis when comparing the highest consumers of vitamin A with the lowest, with the association most prominent in women with no history of infertility, who had a BMI below 25 and who had smoked during their lifetime. The investigations are still undergoing to find out why this reduction in diagnosis risk was observed.

M.Kvaskoff from The Gustave Roussy Institute, France (S#1-5) presented their work entitled

‘Early life events and the risk of endometriosis: The French E3N cohort’

This study analysed questionnaire data from a large group of women with health insurance in France. The purpose of this study was to see if women with endometriosis had exposure to different factors during childhood that made them more susceptible to endometriosis in later life. This study found that both exposure to cats or dogs at home and living on a farm for more than 3 months during childhood increased the risk of endometriosis in later life.

Girls who started their periods before the age of 12 or who had short menstrual cycles before the age of 17 (a short cycle being anything less than 24 days, were also found to be at a higher risk of endometriosis.

Whilst the level of out if school exercise was unrelated to endometriosis risk, more time spent walking (i.e. greater than 5 hours per week) between the ages of 8 and 15 appeared to increase the risk of endometriosis. Higher exposure to UV radiation at place of birth was found to decrease endometriosis. There were a number of early life factors that were found to have no influence over the risk of endometriosis including: birth height/weight, being born premature, breast feeding and maternal smoking.

So what do we make of this study? Well firstly it is important to distinguish causal factors from incidental factors. What do I mean by causal and incidental? Firstly I’ll stop asking rhetoric questions, then I’ll tell you that a causal factor is a factor that is likely to actually increase the risk of endometriosis, whereas a incidental factor is one that is associated with a causal factor so appears to be associated with endometriosis even though it could have no baring directly on the development of the disease.

Let me give you an example; this study found that young girls who undertook more walking exercise were at higher risk of endometriosis. Does this mean that we should stop all young girls from walking so much? No, because if we look at the rest of the results we can see that girls who lived on a farm were at higher risk; girls who lived on a farm are likely to do more walking, so we can see that walking isn’t directly linked to endometriosis risk, rather it is incidentally linked to endo via other factors (such as childhood environment).

More highlights coming soon!

A quick update about emailing blog posts

2011-09-14T16:21:00.004+01:00

Just a quick update to let you know about a feature I've enabled. If you've read one of my blog posts and you know someone who you think it may be of interest to, you can now share that blog post by clicking on the little symbol at the bottom of each post that looks like this:

and then filling out all the relevant bits on the page that pops up, easy!

Wishing you all the best

Matt

My First Publication!

2011-09-13T21:57:00.002+01:00

Well it’s been a busy week, I’ve just returned from the 11^th world congress on endometriosis in France, where I learnt a lot of new things about endometriosis, met a lot of experts in the field and also had a bit of time to enjoy the Mediterranean weather. I’ll be talking about the conference later, but before that I'm going to wallow in immodesty by talking about my very first proper scientific publication on endometriosis entitled “The emerging role of epigenetics and microRNAs in endometriosis” which was published in the Journal of Expert Reviews of Obstetrics and Gynaecology. You can find a link to the abstract here but unfortunately this isn’t the sort of journal you could go down to your local newsagent and pick up. You may also be slightly disheartened to see that in order to read the full article you have to pay $60 (£30) for the privilege (I hasten to add I don’t receive a penny of that money).

Should you be willing to pay the publisher’s charge then that is all very fine and dandy and I hope you enjoy the drive home to your palace in your gold plated Ferrari. If however, you would like to receive the general gist of the article there is a way to access the information it was based upon which would incur you no extra cost. You see, the article itself is taken from what I wrote in my master’s thesis, so if you could read my master’s thesis, you would have a good idea of what is in my article. Fortunately, my university have started keeping an online repository of all recently submitted theses in an electronic format, including mine, which you can find and download here in PDF format.

However, it would be pretty rude of me to just say “here’s my work, enjoy” then stroll off into the sunset, without putting it in context, particularly because the esoteric nature of scientific literature means it is often inaccessible to the public. It would also be pretty silly of me to dedicate this blog to explaining the scientific work of others without explaining my own, so here goes.

The subject of my work, in this instance, concerns the involvement of epigenetics and microRNAs in endometriosis and how the disease originates and progresses. If you’re reading this then chances are you don’t need me to explain endometriosis, but I’ve had several requests to clarify what are epigenetics and microRNAs. The term ‘epigenetic’ loosely means ‘on top of genetics’, so we should probably explain genetics before we tackle epigenetics.

In broad terms genetics is the study of DNA and the way in which it works. DNA is the universal code for life, some of you may have seem this picture before

Image source

That is the structure of the DNA molecule, made from just a handful of different elements joined together in a special arrangement; it is a long list of instructions for making you. Encoded in that double stranded helix is a great deal of information about you; from the colour of your eyes, to the shape of your nose, it dictates the fate of many a feature we use to describe ourselves. Almost every cell in your body contains DNA, and it is a large set of instructions by any account. In total, human DNA contains around 30,000 different individual instructions and each of these instructions we call a ‘gene’. The purpose of most genes is to produce a protein which carries out a specific function. Some of the proteins produced are enzymes that make hormones; others are receptors that allow cells to communicate with one another, the list of functions is quite literally staggering, but all work together to keep your body running. So how do we go from DNA to protein?

Firstly the instructions in the gene have to be read. In order to do this the double strands of the DNA split apart and are transcribed by an enzyme called polymerase. This transcription produces messenger RNA, essentially little pieces of single stranded DNA that contain the information to make a single protein. The messenger RNA then travels to a protein called a ribosome which translates the messenger RNA by bringing in transfer RNAs which have amino acids bound to them. As the transfer RNAs bind to the messenger RNA the chain of amino acids grow longer and as the chain grows it begins to fold into a specific shape that will dictate the function of the protein. Sometimes it is better to visualise these processes as a diagram so below is a picture of the whole transcription and translation process.

Image source

An easier way to think about the whole process is to imagine it as a construction site. The gene is like a blueprint to make a house (protein). The information in the blueprint (DNA) is relayed by the foreman (messenger RNA) to the construction workers (transfer RNAs) who, using their building materials (amino acids), build the house (protein).

So where does epigenetics fit into the picture? Well, genetics only tells us what proteins should be made; it doesn’t tell us when they should be made. It is an interesting fact that the DNA in all your cells contains all the genes to make any protein. For example, the cells in your fingers contain the genes to make teeth and the cells in your brain contain the genes to make kidneys. Why is it then, that we don’t have teeth-hands or brain-kidneys? Well this is where epigenetics comes into play. Epigenetic mechanisms are like switches that can turn genes on or off. There are several epigenetic mechanisms, but the ones I have studied most are DNA methylation and microRNAs.

DNA methylation involves sticking methyl groups to DNA which stops the process of transcription; microRNAs on the other hand act by binding to the messenger RNA, either stopping it being read by the ribosome or signalling that the messenger RNA be destroyed. If we go back to our construction site analogy; DNA methylation would be like someone taking a black pen and blanking out all the bits of information on the blueprint that aren’t needed. MicroRNAs would be like lawyers, who stop the foreman and tell him he can no longer build. Epigenetic mechanisms such as these are extremely important for making sure that your cells function properly, any errors in the way these mechanisms work can be disastrous for your body.

I’m hoping my cobbled together explanation of genetics and epigenetics has made at least some sense, but how does it all fit into endometriosis? Well, there have been several studies that suggest that epigenetic mechanisms malfunction in endometriosis. Despite the work of a few pioneering scientists, our understanding of the subject is not complete by any means as epigenetics is a relatively young field of science, having only really existed for the last 20 years or so. Nevertheless, epigenetics has told us a great deal about the way in which complex diseases like cancer work, so the aim of my article was to take what we do know so far and see what it can tell us about some of the mysteries of endometriosis.

I’ll summarise what I wrote about in my paper, and keep it brief for everyone’s sake.

There are altered patterns of DNA methylation in endometriotic cells that may explain why they are so resistant to drugs and how they can produce their own estrogen supply

The pattern of microRNAs is different in endometriotic cells compared to normal endometrium, this could explain a number of features of endometriosis, including some of the immune system abnormalities associated with endometriosis

The altered pattern of microRNAs and DNA methylation could also potentially explain the rare instances when endometriosis of the ovary can turn into ovarian cancer

Because microRNAs are also found in the blood, the pattern of microRNAs in women with endometriosis may be different from that of disease free women (I found out only last week that this has been experimentally proven). Therefore, this could lead to a simple blood test for endometriosis

· Epigenetic errors can be brought on by exposure to certain environmental toxicants. These epigenetic errors can be passed down family lines. This means that some pollutant that your mother, or even your grandmother, was exposed to may have increased your risk of developing endometriosis.

I’m currently writing another paper where I hope to expand on the role of epigenetic mechanisms in the malignant transformation of endometriosis. But enough of this self-congratulatory ego-massaging, as I mentioned at the beginning of this post, I’ve just returned from the 11th world congress on endometriosis so for the next few weeks I’ll be putting up ‘mini-posts’ about some of the more interesting things discussed at the conference.

You’re never too old, or too young

2011-08-23T20:19:00.002+01:00

Quick, if I were to ask you to name any times in a woman’s life when she shouldn’t suffer from endometriosis, what would you say? Most likely, anyone with a basic knowledge of the disease will say premenarcheal (before her periods start) and postmenopausal (after menopause) because endometriosis is a disease dependant on hormones, right? So before and after the time a woman can menstruate there should be no chance of endometriosis developing, it’s just logical to think that way.

Well if life teaches us anything, it’s that some things are not logical, and endometriosis is one of those things. In terms of logicality, endometriosis is kind of like sticking your head in a washing machine filled with Salvador Dali and M.C Esher paintings.

Pictured: endometriosis

Because of this there are cases (albeit very rare cases) of endometriosis occurring in young girls and older women. Of note there have been reports of symptomatic endometriosis in girls as young as 8 and in women as old as 80. So how can we explain these odd, seemingly illogical occurrences, can we even explain them?

The answer is a resounding “well, sort of”. Endometriosis in postmenopausal women is perhaps the easier of the two entities to explain. Postmenopausal women may be taking hormone replacement therapy (HRT) which would provide any endometriotic implants with a steady supply of estrogen to keep them going. Some reports have even stated that postmenopausal women taking HRT have an increased, but poorly defined, risk of previous endometriosis recurring.

But (and there is always a ‘but’ to complicate matters), there have also been reports of postmenopausal women with no past history of the disease, suddenly developing endometriosis. There are a number of explanations for this though. Firstly, the woman may have had endometriosis lingering in her body all along, and any number of contributory factors may have suddenly caused it to grow. Secondly, if the woman has had any major surgery in her pelvic area (e.g. hysterectomy, oopherectomy etc) tiny bits of the endometrium may have been spread around her pelvic cavity during surgery, which may then implant to form endometriosis later on (this mechanism is thought to be one of the ways surgical scar endometriosis occurs).

An unanswered question remains though, if a woman is past menopause and not taking HRT how does the endometriosis get the estrogen it needs to survive? After menopause a woman’s ovaries begin to shut down and a drastic reduction in estrogen production occurs over a period of about 4 years. However, androgens are still produced, albeit at a diminishing rate, by the adrenal glands and ovaries after menopause. Androgens are another group of hormones that could loosely be described as being responsible for the development of masculine characteristics. Women also produce androgens, but at a lower level than men and androgens in women can be converted into estrogen. However, you need certain enzymes to convert androgens to estrogens, the most famous of which is aromatase.

Aromatase is an enzyme whose job it is to take hormones like testosterone and convert them into estrogen. Aromatase is expressed in a number of cell types including the ovaries, fat cells, endometrium and guess where else? That’s right, in some but not all, endometriotic cells too. This means that any endometriotic implant that expresses the aromatase enzyme can essentially make its own estrogen. Even with the low levels of androgens produced in postmenopausal women, endometriosis with active aromatase could produce its own estrogen and hence survive in a woman who has gone through the menopause.

Well, you may think, that all sounds very plausible but is there any evidence to substantiate this little theory of yours? Good question and yes there is. You see, there is a group of drugs called aromatase inhibitors that are sometimes given to women with endometriosis and there are no prizes for guessing that these drugs inhibit the aromatase enzyme. In some cases of women with postmenopausal endometriosis there is evidence to suggest treatment with aromatase inhibitors can significantly reduce their symptoms. Of course, the problem with aromatase inhibitors is that they decrease estrogen levels even further, which if you are past the menopause it probably going to lead to complications and adverse side effects.

But what of premenarcheal endometriosis? There is, some good evidence, which I have mentioned previously, concerning the discovery of displaced endometrium, a hallmark of endometriosis, being found in unborn human foetuses. Conveniently, the research group who made these previous discoveries have recently published another paper of their largest study yet confirming the cells that preclude endometriosis can be found in girls before they are even born. So, it would appear we have a possible answer for why such young girls can develop endometriosis; the bigger question though is how, and therein lies the rub.

At present the ‘how’ is the unanswerable question. Is there any reasonable explanation for how girls who haven’t even reached puberty can develop endometriosis? There are of course arguments that environmental pollutants can bring about the development of endometriosis, but the evidence for this is rather weak and highly debated so we can’t (or rather shouldn’t) draw any conclusions from that particular line of evidence, yet.

There are so many factors which are thought to influence the development of endometriosis such as; genetics, epigenetics, diet, lifestyle, environment, immune function, family history, that we may never have a singular cause for endometriosis. Some women may inherit it, some women may acquire it. Perhaps we need not think of endometriosis as one giant jigsaw to be pieced together; perhaps we need to see each case as its own, individual puzzle.

Do not adjust your set

2011-08-10T11:59:00.001+01:00

Don’t worry! This is the same blog as before! The eagle eyed amongst regular readers will probably notice that there have been a few aesthetic changes to the blog. Basically just to give it a bit more colour and generally make it nicer to read. However, due to my artistic (i.e. awkward and indecisive) temperament there may be a few more changes going on. Normal service will be resumed shortly.

Surgical treatment for Deeply Infiltrating Endometriosis (DIE)

2011-08-09T21:05:00.002+01:00

If you suffer from endometriosis then you may be offered surgical treatment to remove the disease. I say you may be offered surgical intervention because there are several factors that determine how likely this option will be given to you, such as; the severity of your symptoms, your fertility, your age, your response to drug treatment, what country you live in and how wealthy you are (sad, but true). If you are offered a surgical treatment, one of your main concerns is going to be, how successful will the surgery be? After all, you are placing a great deal of faith in the hands of the surgeon and you don’t want that faith to be misplaced. No surgery is to be taken lightly, so you want to know the investment you’re making with your health is going to be worth the payoff.

There are several different types of surgery for women with endometriosis, with varying degrees of success, which broadly fall into the two categories of conservative (e.g. excision or ablation) and radical (e.g. partial or complete remove of affected organs). I’ve spoken about the success rates of different surgeries before, but I’ve yet to discuss the success of surgery in the context of what type of endometriosis is being operated on. So, first off, a basic reminder of the different types of endometriosis. There are superficial endometriotic implants, which appear on the surface of organs like the ones in the picture below. These implants come in a variety of colours such a red, blue or black and generally the colour denotes how active the implant is.

In this picture you can see some blue implants as well as reddish-brown ones.

Picture courtesy of endometriosiszone.org

Then there are endometriotic cysts (endometrioma) which usually occur on the ovary and can range from as small as a pea to as large as a melon.

The endometrioma is the dark reddish-purple patch in the middle of the picture.

Picture courtesy of endometriosiszone.org

And there is also deeply infiltrating endometriosis (DIE) which can be one of the most difficult types to visualise and hence, operate on. The reason this type of endometriosis is so difficult to see is that the implants can be very small, up the point of being microscopic and so, invisible to the naked eye. The reason it is known as deeply infiltrating is that, unlike superficial endometriosis, DIE can ‘burrow into’ organs at depths ranging from 2mm to over 15mm and this is thought to be a significant cause of the very painful symptoms associated with endometriosis.

I’m going to focus on DIE for the rest of this post because the article I’ve come across recently is about the success of surgery for this type of endometriosis. The article in question followed 193 women with and without DIE, undergoing excisional surgery in the Päijät-Häme Central Hospital, Lahti, Finland. Women undergoing surgery for DIE were found to have significantly higher rASRM scores than those with other forms of the disease.

rASRM, to clarify, stands for the revised scoring system of the American Society of Reproductive Medicine, who devised this scheme to classify the severity of different kinds of endometriosis. It is based on several features found inside the pelvis during surgery such as type, size and location of endometriosis, as well as the presence and severity of adhesions. The scoring system then classifies the endometriosis into one of four stages; minimal, mild, moderate or severe (although it is worth noting that severity of endometriosis appears to have little bearing on severity of symptoms). In this Finnish study, women with DIE had average rASRM scores that were very close to classing them with severe endometriosis. Women without DIE had average rASRM scores that would classify them as having moderate disease.

This study also found that women with DIE had significantly more previous surgeries for endometriosis and more were indicated for surgery because of pain. With respect to the surgical procedures performed; 60% of women with DIE had surgical excision of peritoneal lesions compared to 82% of those without DIE. This could be reflecting the difficulty of removing lesions in women with DIE, or it may be that women with DIE do not have as many peritoneal lesions.

92% of women with DIE had to have adhesions cut away compared to 69% of women without DIE. This might be reflective of the fact that women with DIE have had more previous surgeries, which would increase the chances of adhesions forming. Interestingly, 32% of women with DIE had a hysterectomy of some variety, compared to only 8% of women without DIE. The reason for this could be that, because deeply infiltrating lesions can be very challenging and time consuming to remove individually (hence, increasing the likelihood of serious complications arising), surgeons may opt for complete removal of the uterus as a quicker and safer procedure.

This study also looked at the completeness of excision of endometriosis during a single operation. Women with DIE compared favourably to those without in this aspect as complete excision was reported in 95% and 97% of cases respectively. However, excision during a laparoscopic surgery for DIE was only complete in 79% in of cases compared to 95% complete removal of endometriosis in women without DIE.

The final important finding of this study was that deep lesions are frequently found outside of the ‘typical’ locations i.e. the uterus, ovaries etc. This is significant because gynaecological surgeons may be unfamiliar with operating in atypical locations, therefore a multidisciplinary approach may be required involving additional specialist surgeons.

Then there is the issue of should patients have preoperative medical therapy? On the one hand some studies suggest that medical therapy before surgery may reduce the risk of complications arising during surgery. However some eminent specialists in endometriosis surgery forgo the use of drugs that may suppress endometriosis due to the fact that they may make the endometriotic implants harder to see whilst operating. If you are due to have surgical treatment for endometriosis anytime soon, these are issues you should raise with your surgeon. It is also important to remember that, if you do have deeply infiltrating endometriosis and are due for surgical excision, it is in your best interest to have a surgeon who is well experienced in this type of procedure and familiar with the problems this type of endometriosis can present.

Whilst we must always remember that one, relatively small, study such as this does not set the standard for all surgeries for DIE, it does give us a good example of what can be expected, the problems faced by patients and surgeons, and perhaps ways in which we can improve the surgical treatment of endometriosis.

The Facts about Endometriosis

2011-07-22T11:24:00.002+01:00

I remember way back when I first started studying endometriosis, it must have been around seven years ago when I properly got into it. When it comes to studying a subject, seven years isn’t very long, but I already had a bit of a head start in understanding endometriosis because I grew up with a mother who had endometriosis, so I got to see the effects of the disease first hand. That said, even with a fair degree of background knowledge, there was still a lot I didn’t know about the disease and trying to find information about endometriosis was quite difficult as there were very few studies that explored how the disease affected women. There have been a few small scale studies in the meantime that have addressed the issue and given us some of the common statistics we hear about endometriosis (like average diagnostic delay, average age of suffer etc etc. But these studies have tended only to focus on a single country or population which limits their scope.

In order to address this issue the Global Study of Women’s Health (GWSH) have recently completed a study looking at the effect of endometriosis on 1,418 women in 16 different countries around the world. One of the key findings of this study I have mentioned before in a previous post, but more data has been released, which highlights some other important information about endometriosis that everyone should know. I’ll go through what else has been found so far and give a little comment on each finding:

• “Women with endometriosis experienced an average delay of 7 years from symptom onset until they were finally diagnosed and treated”
The delay in diagnosis is one of the points that needs addressing most urgently in women with endometriosis. I’ve heard other statistics that say the average time to diagnosis is around 7-9 years and frankly this is totally unacceptable. In my humble opinion, the best way to shorten these diagnostic delays is to get more education about endometriosis to young girls and medical professionals.

• “Two-thirds of women sought medical help for their symptoms before the age of 30 (one-fifth below the age of 19)”
It’s interesting to know when women are seeking help for their symptoms. I know a lot of women get put off seeking help because they continually get unhelpful medical advice, which is another reason why better education about endometriosis is needed.

• “65% of women with endometriosis presented with pain, and one-third of these women were also infertile”
Nothing massively surprising with this finding. However this is exactly the sort of information that, although it seems obvious to you and me, needs to be shoved in the faces of those with enough power and money to do something about it.

• “Infertility alone, without pain, was reported in 14% of women with endometriosis and 29% of those who did not have endometriosis”
When I looked at this, at first I thought it was saying women with endometriosis had less infertility than those without. Looking at it though, it’s saying women with endometriosis experience more pain with infertility than those without endometriosis. OK, that may have been obvious to you, but it had me scratching my head for a minute.

• “The severity of endometriosis (r-AFS disease stage) did not reflect the severity of a woman’s symptoms”
This is another finding that definitely needs to be reiterated to everyone everywhere. It is an important piece of information because it seems to counterintuitive. Anyone who was new to endometriosis may think that minimal disease equals minimal symptoms, but endometriosis is not a simple, logical disease. That is why studies like these, which turn assumptions on their head, need to be done.

• “Women with endometriosis suffer a 38% greater loss of work productivity than those without endometriosis – this difference was mainly explained by a greater severity of pain symptoms among women with endometriosis”
• “Reduced effectiveness at work accounts for more loss of work productivity than time missed from work”
• “Non-work related activities, such as housework, exercising, studying, shopping and childcare were also significantly impaired by the painful symptoms of endometriosis”
These all seem pretty obvious. But anyone reading this probably has the power of hindsight. When I first started out researching endometriosis this is exactly the sort of information I needed to know and is exactly the sort of information politicians, policy makers and anyone ignorant to the plight of endometriosis sufferers need.

• “The pain symptoms of endometriosis reduce quality of life, with the impact being mainly on physical, rather than mental, health. As symptoms become more severe, quality of life is further reduced”
Well, Duh. But in all seriousness, studies like this are great for highlighting the problems faced by women with endometriosis and the more awareness we have the more support we can get.

Trendy

2011-06-21T12:31:00.003+01:00

There’s quite a lot of research going on into endometriosis; no really there is. Although there are a few reasons why you may not have heard about it. Firstly, this research isn’t well publicised outside of the scientific community (and to be honest, it isn’t well publicised inside the scientific community either). Secondly, the research isn’t made widely accessible to the public. Most scientific literature on endometriosis gives us accurate information about the disease, but is presented in such a way that, unless you’ve got a hell of a lot of letters after your name, may as well be written in Sanskrit. It’s the whole aim of this blog to try and get the more interesting research stories out there for people to read and, unlike certain media outlets, try to report it truthfully. Whilst I try to cover interesting stories, I haven’t really covered the amount of research that is going on the trends in said research. So this post is an attempt to rectify that.

To start off we should look at how much research has been going on to date; a good way to judge that is by looking at the number of scientific journal articles that have been published on endometriosis over the last 60 years. Figure 1 below shows the number of scientific articles published on endometriosis since the 1950’s, and as you can see, there has been a surge in endometriosis research in recent times. To put it into context, there have been more articles published on endometriosis since the year 2000 than there were articles published in all the years preceding 2000.

Figure 1. Number of scientific articles published on endometriosis since 1950 (click image for full size)

So we appear to be living in a kind of ‘golden age’ of endometriosis research at the moment. Unfortunately though, whilst this has led to a better understanding of how the disease works, it hasn’t really translated to any dramatic improvements in the level of treatment for the disease, yet.

So what are the main subject areas being focussed on at the moment? Figures 2a and 2b show what subject matters are most common in the field of endometriosis research.

Figure 2a. Trends in endometriosis research (click image for full size)

Figure 2b. Trends in endometriosis research (click image for full size)

As we can see from Figure 2a the number of papers published with the keywords ‘diagnosis’ or ‘drug’ remained fairly constant with a dip around 2010. We’ll have to wait until the end of 2011 to see whether interest in these areas goes up again. It could be the reason for this dip in these areas is tied into the current global financial crisis. Drug research in particular is a very costly undertaking (it can cost nearly $1billion just to take one drug from concept to pharmacy shelf); these days drug companies are unlikely to be forthcoming with the hundreds of millions of dollars necessary for research into drug treatments for endometriosis. That said, articles with the keyword ‘diagnosis’ still dominate the research landscape comprising around 70% of all papers published on endometriosis. This reflects the desperate need for better diagnostic methods for endometriosis which, given the large amount of interest in the subject, will hopefully yield some results soon.

There has also been a steadily increasing level of interest in genetic and immune system research into endometriosis. With the completion of the human genome project at the turn of millennium, looking into what genetic differences make us more or less susceptible to certain diseases has become steadily easier and cheaper, so there’s no surprises there. What is quite interesting is the emergence of epigenetic research into endometriosis around 2005. Epigenetics is a relatively new field of science, only really being properly investigated from around 20 years ago. The difference between genetics and epigenetic is that, whereas genetics is concerned with the changes in the code of DNA, epigenetics is concerned with changes in the bits that are attached to the DNA. These epigenetic marks control which genes are turned ‘on’ or ‘off’ in your body and are therefore essential in maintaining correct bodily function. Several studies have shown that a number of the epigenetic marks are altered in endometriosis and this may provide some interesting answers to some of the more puzzling aspects of the disease.

So, the final thing to consider is where this research is coming from. Unfortunately, there is no easy way to know exactly as the current search engines for scientific literature don’t let you search by the location of where the research was done. I could go through the 17,000 individual articles on endometriosis and note down where the research centres were, but I don’t think I’ll live that long. What the current search engines do allow you to do is search by where the articles were published. The trouble is, where a piece of research was carried out and where it was published could be two completely different places. I could write an article here in England and get it published in an American journal and the search results would show that the article was American. Nevertheless this information does provide some interesting insights into where the major centres of endometriosis publication are (see Figure 3 below).

Figure 3. Articles published on endometriosis by country of publication (click image for full size)

Unsurprisingly the majority of endometriosis research is published in America and the UK; this is most likely due to the fact that if you want to get your research to a wider audience, English is the most widely spoken language in the world, so it’s better to have it published in an English language journal. The most important thing to see in this data though, is that all the bars point upwards over time, meaning more research into endometriosis. To emphasise my point, let’s look at the last 100 articles on endometriosis (between 13th June and 18th April 2011) by the country in which the research was actually done. Figure 4 below shows that there is a huge diversity of countries in which endometriosis research is being carried out, just within the last few months.

Figure 4. Articles published on endometriosis by country of research (click on image for full size)

Unsurprisingly, we can see that the most research is coming out of the superpower countries like the USA and China. Whilst Figure 4 only shows the results from 100 articles it still tells us that endometriosis is being addressed as a global problem and that the world is standing up and taking notice.

But we don’t need to only consider the scientific literature published on endometriosis. There is a handy little feature of Google Books called the Ngram viewer that lets us look at the number of books published on endometriosis over the last 100 years of so. If we look at Figure 5a and 5b we can see that during the period after 1960 the number of books concerning endometriosis really started to flourish. Sadly though the amount of books published in American English has taken a downturn (Fig.5a). On a positive note though, books in British English have continued to increase at a fairly constant rate (Fig.5b) and fortunately, for the most part, you don’t need to translate between the two English forms.

Figure 5a. Books published on endometriosis in American English (click image for full size)

Figure 5b. Books published on endometriosis in British English (click image for full size)

Sometimes it can feel like the world is ignoring those who suffer with endometriosis, but that really is not the case, as I hope I’ve shown here. I wouldn’t go as far to say that the behemoth of scientific research has its attention fully on the subject of endometriosis, but the great beast definitely has one of its eyes cast over endometriosis and is slowly realising its importance. If the current trends that we have explored here continue then the future for endometriosis sufferers doesn’t look so bleak. That’s an important notion to bear in mind, when your daily life consists of so much suffering, you must believe that it will get better, I certainly do.

Endometriosis and Age at Menopause

2011-06-11T17:04:00.003+01:00

Menstruation, there’s good and bad things about it. Any post-menarcheal woman reading this will be more than familiar with the ‘bad things’ which include: pain, irritability, bloating, pain, nausea, headaches, tiredness, pain, bleeding, generally feeling shit, I could go on. So I bet you’re wondering where I’m going to pull the ‘good things’ associated with menstruation from. Well one thing I’ve noticed over the years is that the mere mention of menstruation is enough to halt any conversation dead in its tracks; and that can come in handy sometimes.

Seriously, give it a try, next time you’re at wedding or other such family gathering and get stuck talking to some boring relative just drop in a quick description of your last period and everyone within earshot will try to climb inside their own shoes, leaving you to enjoy the buffet in peace. Done something wrong at work and got called into the boss’s office? Start off the conversation by recounting a memorable menstrual episode and I guarantee you’ll be out of there scot free within five seconds. Pulled over for speeding? Tell the office on duty about how many tampons you get through a month and he’ll tear up your ticket there and then*. But there comes a time in woman’s life where menstruation stops, and that time is menopause.

*ok that last one may not work

Menopause, for those that don’t know, signals the end of a woman’s menstrual cycles. In the western world menopause occurs, on average, around the age of 52 and is usually a gradual process that takes place over months or even years. If you’re a lady and you’d like to know approximately when you’ll go through the menopause, a good indication is your mother’s age when she went through menopause. The reason that a woman’s menstrual cycles stop is that, as a woman gets older, her body’s hormone levels change, this means that the levels of oestrogen in her body will gradually decrease and the production of mature eggs (ovulation) will eventually stop and so menstruation becomes unnecessary.

This change in body hormone levels doesn’t come without consequences though. You’ve probably heard of some of the common symptoms of menopause such as hot flushes and mood changes and this is all tied in to the body adjusting to the new hormonal balance.

There are a number of factors that affect the age at which a woman goes through menopause. I’ve mentioned above that one of the major influences is her mother’s age at menopause, However, factors that may increase the age at menopause include: Having more than three children, being of high socioeconomic status, and having a high BMI. Factors that can decrease the age at menopause include: smoking and low BMI.

Why am I talking about menopause though? Well there was a study published recently that showed women who have a history of endometriosis are likely to have an earlier menopause. The study itself was quite thorough in its methods, they looked at surveys of 49,927 female, Japanese nurses between 2001 and 2007. In this population the average age at menopause was 49.5, that decreased to 48.8 for endometriosis sufferers. Why might this be the case? The authors of the paper suggest that surgical and medical treatments associated with endometriosis may contribute. For example, surgery involving the ovary, such as excision of removal, was found to decrease the age at menopause. The role of medical treatments was harder to judge as there are conflicting reports as to the effect of certain drugs on menopause. Certain studies on oral contraceptives, for example, show they increase the age at menopause, whereas other studies show they have no effect at all, so the jury’s still out on that.

Endometriosis mimicked by office printers, yes you read that right

2011-06-07T08:58:00.001+01:00

You come across a lot of strange things in this world, mostly on reality TV shows, but occasionally a piece of academic literature will make you scratch your head and think “really?” There’s a whole blog dedicated to these type of research, they have examples such as; using Rastafarians to cure arachnophobia, and studying how your general income affects your propensity to eat coins. I’ll not dwell on my simmering rage at the fact that there seems to be an endless pot of gold to fund research into pointless subjects, yet if you want to do serious research into a chronic condition like endometriosis, you have to beg for scraps, no I’ll not dwell on that.

What I’m trying to get at is that occasionally, the apparently drab world of scientific investigation can throw something interesting into the mix. This leads me onto one of my latest finds. This was a paper entitled “Submesothelial deposition of carbon nanoparticles after toner exposition: case report”, which struck me as rather odd considering it came up in a search for papers on endometriosis. By all accounts it’s not a jokey paper like the ones mentioned above, but a serious investigation into the effect of exposure to carbon nanoparticles given off by office printers on people’s health.

One case in particular is interesting, the case of a woman who underwent laparoscopic surgery with suspected endometriosis. The surgeons found black deposits in her peritoneum (pelvic cavity), which is pretty indicative of endometriosis. However, the surgeons took a sample of one of these supposed endometriotic implants and examined it more closely under a powerful microscope. What they found, to their surprise, was that the black deposits, which looked like endometriosis to the naked eye, were clumps of carbon nanoparticles (basically the tiny particles given off by printer toner cartridges. To give to an idea how tiny, the largest particles were 60nm in diameter, that’s the size you would get if you took a ruler, measured out 1mm then divided that into a thousand pieces, then took one of those pieces and divided it into seventeen pieces, each one of the remaining pieces would be around 60nm) and not endometriosis at all. Quite odd I think you’ll agree.

So how did printer toner dust end up in this woman’s pelvic cavity? The lady in question was working in an office with eight printers in close proximity, in addition to this she was using a laser printer herself pretty much constantly meaning there was ample time to breathe in lots of toner particles. The authors speculate that the carbon dust particles entered her body through the lungs and, because they were so small, were able to pass through the lining of the lungs into the blood and lymph vessels. From there they travelled around the body and for some reason deposited in the pelvic cavity.

As far as I know this is the only such report on record of carbon nanoparticles mimicking endometriosis, and on closer inspection it’s pretty easy to tell the two apart. Still, it’s quite an unusual finding.

Too old for this

2011-05-10T09:57:00.000+01:00

Just a quick post this time, I found a report of two unusual presentations of ovarian endometriosis. One case was a woman of 57 and the other a woman of 80, which is the oldest woman with endometriosis I’ve heard of (although I’m willing to be corrected). Both cases are in post menopausal women, which in itself it pretty unusual in itself. The reason for this is that during menopause the ovaries start shutting down and stop producing estrogen. This isn’t so good when you consider the side effects - like hot flashes, mood swings, bone density loss etc – however, if you have endometriosis then lack of estrogen is generally considered a positive as estrogen is thought to be the ‘fuel’ of endometriosis. In case of point, a 15 year follow up study of 130 women with endometriosis from Norway found that 96.9% of them were pain free after menopause.

Considering that, it’s pretty obvious why most of the medical therapy for endometriosis is focussed on reducing estrogen within the body. However, if a woman’s menopause symptoms are particularly severe she may be offered hormone replacement therapy (HRT). This isn’t such a good thing if she has also had endometriosis as HRT basically puts estrogen back into the body, which may lead to resurgence of endometriosis. Of course, as most women with endometriosis don’t continue to have symptoms after menopause, it’s not a massive risk, but it is a risk and doctors need to be aware of this. Postmenopausal endometriosis can also be associated with some serious complications; the 80 year old woman mentioned above also developed a malignant endometrioid carcinoma; other complications which have been reported include: kidney failure associated with postmenopausal deeply infiltrating endometriosis, bowel obstruction, liver damage and a general increase in risk of malignant transformation of ovarian endometriosis (although solid evidence of the latter is lacking).

Therefore, it is important for all women who have gone through the menopause (either naturally or through surgery) and have endometriosis to be aware of any recurrence of symptoms, especially if they are also undergoing HRT.

Here there and everywhere

2011-04-18T11:56:00.005+01:00

I’ve mentioned a few times throughout this blog about the occurrence of extra-pelvic endometriosis, that is, endometriosis that occurs in places you wouldn’t usually expect to find it. Whilst this is a relatively rare presentation of endometriosis, recently there seems to have been a glut of publications about this vey subject, so I thought it would be worth jumping on the bandwagon and writing a bit more about it.

I’ll start with, what appears to be, the most common type of extra-pelvic endo; abdominal scar endometriosis. Women with endo are far more likely to have surgeries that leave them with abdominal scars, such as laparoscopies, laparotomies and hysterectomies; so surgeons need to be made aware of the risk and protocols need to be established in order to minimise the occurrence of scar endo. At the same time, doctors need to be made more aware of extra-pelvic endometriosis so it can be recognised and treated quickly.

The first study is a report of three cases of abdominal wall scar endometriosis after caesarean from the Romanian Journal of Morphology and Embryology. The authors make an important point, which is that scar endo is ‘iatrogenic’, meaning that it is a condition caused by a medical procedure. I hate to sound like I’m repeating myself, but this is something that surgeons really need to be aware of. Then there is another report of something similar from Ginekol Polska (Eastern Europe seems to be a great place for extra-pelvic endo awareness at the moment). This report doesn’t specify which surgical procedure was performed (in the abstract anyway), rather just states endometriosis was found in a pfannenstiel incision, which refers to a large abdominal incision much like you would get from a caesarean section or laparotomy.

Following on from that, here are two cases of mistaken identity. A recent study reported a case of endometriosis of the appendix mimicking appendicitis. Although this could have led to some very serious problems, fortunately surgical removal of the appendix proved effective. Finally, there is a case report of a woman who was thought to have rectal cancer, but upon investigation was found to have rectal endometriosis. The reported involvement of endo in the lymph nodes of this case is significant as it suggests the endo may be quite invasive.

The only way to diagnose extra-pelvic endometriosis is histologically; this means cutting a piece of the suspect tissue out and examining it under a microscope to see if it looks like endometriosis. Similarly, the only way to treat extra-pelvic endometriosis is surgical removal. This, of course, sounds rather counter intuitive. If you have scar endometriosis, the last thing you think you’d need is to be cut open again. Because, whilst this would remove the endometriosis, it would create a fresh scar that may end up forming more scar endo later on, which you would then need more surgery for; it’s a situation so circular it’ll make your head spin.

There are also the inherent risks that multiple surgeries carry to consider. This paper rightly points out that repeated surgical incisions, particularly in the abdomen, may lead to increased risk of hernias, abscesses, lipoma (a benign fatty tumour) and granuloma (a mass formed by the body in order to contain a foreign substance).

So perhaps it is time to start looking at less radical methods for excision of extra-pelvic endometriosis. It is also important to be aware of the symptoms of extra-pelvic endometriosis. If you notice any pain that comes on a cycle accompanied by changes in skin colour/texture/sensitivity/inflammation it is definitely worth having these symptoms investigated.

If anyone is interested in some further reading, there is a good free-text article on extra-pelvic endometriosis here.

The Top Ten Bullshit Myths about Endometriosis

2011-03-29T21:37:00.001+01:00

If you’ve suffered with endometriosis for any length of time chances are you’ve had plenty of advice from people, and chances are not all of it was helpful. One of the many problems with being an endometriosis sufferer is that some people, despite having good intentions, tend to have opinions that they feel the need to share with you despite the fact they don’t know what they’re talking about (this extents to certain members of the medical profession as well I might add). It also seems to be that the same spurious old wives tales keep being trotted out as fact and the same mistakes keep being made. It is a saddening fact but if you are a woman with endometriosis you have to become an expert on the subject, because so much crap gets thrown your way you have to learn how to deflect it. So, with that in mind and with a fair deal of inspiration from reading Cracked.com too much and a thread on the Endometriosis Research Center’s facebook page I present, in order of increasing capacity to irritate:

The Top 10 Bullshit Myths about Endometriosis

10) You can only get endometriosis in your pelvic area i.e. on the uterus and ovaries

Whilst it may be true that endometriosis is most commonly found on or around the uterus and ovaries, it is by no means exclusive to these areas. I put up a post in July last year that gave accounts of endometriosis in just about any area of the body you care to mention. Whilst It is a rare occurrence, extra-pelvic endometriosis is a very real, and in some cases, very serious problem. How endometriosis ends up in these areas is still a matter up for debate, however there have been several studies looking at cellular adhesion molecules (CAMs) in endometriosis. CAMs are like the anchors of a cell and depending on the expression of these CAMs cells can stick together or unstick themselves and move around the body. When cells end up moving around the body in this manner it is called metastasis, and is a characteristic of some cancer cells (when you hear of someone who’s cancer has spread, it can mean that the cancer cells have lost their CAMs and allowed the cells to move around the body). The studies mentioned above found that the expression of CAMs was abnormal in endometriotic cells, indicating they may be able to metastasise in a similar manner, possibly through the lymphatic system, thus explaining how you can get endometriosis in so many different places.

9) You can’t have endometriosis if you’ve had a hysterectomy

This one goes hand in hand with the whole ‘hysterectomy is a cure for endometriosis’ nonsense. Having a uterus is not necessarily a prerequisite for having endometriosis and removing the uterus certainly cannot be deemed a cure. To quote one study from the literature “probability of pain persistence [in the medium term] after hysterectomy is 15% and risk of pain worsening 3-5%, with a six times higher risk for further surgery in patients with ovarian preservation as compared to ovarian removal”. Recurrence of endometriosis is also very much dependant on the type of post surgical medical therapy used. If the ovaries are removed then unless you have already reached menopause chances are you’ll have to take hormone replacement, which carries an inherent risk of increasing the recurrence of the disease. It is therefore imperative that post-surgical medical therapy is careful managed.

8) You don’t need to be diagnosed, you can just take drugs to manage your symptoms

Let’s say you’re driving along one day when all of a sudden your car breaks down. You pull over to and call out a mechanic. The mechanic turns up, doesn’t open the bonnet but says “Yeh it’s probably the spark plugs”, he then proceeds to change the spark plugs. This doesn’t make the car start. So he says “Ah well in that case it’s probably the oil”, he then goes in and changes the oil. This doesn’t work either, so he carries on suggesting things that might be wrong without ever actually examining the engine properly, until eventually he might, by a process of trial and error, find something that works. Then you drive off without ever knowing what was wrong with your car or whether the problem will come back. Now, you wouldn’t accept this as a viable method of fixing a car so why would you accept this as a method of finding a treatment for a chronic illness? Yes the undiagnosed treatment may help relieve your symptoms but it doesn’t tell you what’s wrong in the first place. Many of the women I’ve talked to over the years spoke of a ‘sense of relief’ at diagnosis, because they had been suffering for so long they just wanted to know what was wrong. Diagnosing a disease acknowledges it is a real entity; knowing you are ill but not being able to put a name to the problem is like having the sword of Damocles dangling over you, with fear and uncertainty becoming mainstays of daily life. Aside from these issues, if endometriosis is not being diagnosed then how are we supposed to know how prevalent the disease is? If all doctors suddenly decided diagnosis was unnecessary then new cases of endometriosis will become zero, as you can’t report endometriosis unless there is visualisation at laparoscopy or histological diagnosis. What would this do for awareness or research for the disease? Not many people would be interested in a disease to which such a blasé attitude is taken. Endometriosis is the Schrödinger’s cat of diseases; it may or may not be there, so you have to open the box to check.

7) Wearing tampons causes endometriosis

I’m not sure where this myth came from. It may be that some people think that wearing tampons increases the amount of retrograde menstruation, but there is no evidence anywhere to support that. It may be that some people feel that toxicants present in tampons may lead to an increased risk of endometriosis. In this case ‘toxicants’ refers to our old favourite dioxin which may get into tampons via the bleaching process that the cotton undergoes. However, a study by the Food and Drug Administration (FDA) on the levels of dioxin in tampons found “most of the dioxins and furans were below the detection limit”. Another nail in the coffin of this myth is a further study which found that tampon use actually decreased risk of endometriosis. However, I will say that the methodology of this study wasn’t exactly perfect. I can’t get access to the full text and comments on this article, but the control group could have been better selected and a follow up would have given a much better insight into the consequences of tampon use. Nevertheless, I think we can safely say Myth Busted.

6) Endometriosis is caused by an infection, like an STI, which can be treated by antibiotics

We’re starting to move from simple misinformation to the just plain silly now. Most of the myths we’ve explored have at least been derived from some sort of logic (albeit horribly skewed). This myth is just nonsense and I suspect originates from confusion between endometriosis and endometritis, which is caused by infection of the endometrium by sexually transmitted or other types of bacteria. However, endometriosis and endometritis are completely different pathological entities so please feel free to correct anyone who confuses the two.

5) Only career women who have delayed having children get endometriosis

A different type of confusion here, this time its people getting confused between those who are more likely to get a disease and those who only get a disease. Yes, adult women between the ages of 21-35 are more likely to be diagnosed with endometriosis (note that I emphasised diagnosed because the symptoms of the disease often start a long time before diagnosis). There is also some evidence to suggest the more children you have the less risk of developing endometriosis you have. However, this is probably due to the suppressive (not curative) effect pregnancy can have on endometriosis, but more on that later. So although adult women who don’t have children are more at risk of endometriosis, this does not mean they are the only ones who have endometriosis. In fact if you think about it, endometriosis is a disease of adolescence. If most women with endometriosis get diagnosed in their mid-twenties and the diagnostic delay is, on average, 7-9 years, this means most women with endometriosis start experiencing symptoms in their teens, some women even get symptoms when they start their periods. It is extremely important to recognise and treat symptoms as an when they appear in young women, as highlighted by a recent study which showed young women who did not remain on treatment for their pain symptoms wound up with a more advanced stage of endometriosis. A great article on endometriosis and adolescents can be found here. The description of endometriosis symptoms presenting in an 8 year old girl certainly raised an eyebrow.

4) Endometriosis can be caused by psychological trauma in early life/ it’s all in your head

Easily this is the one that riles me more than any other stupid thing said about endometriosis. The only reason this isn’t number one is because I don’t hear it as often as the last two. Lets address the ‘it’s all in your head’ bullshit first as it’s the easiest to dismiss. Take at look at these pictures here, here and here, print them off if you like and carry them around with you. If anyone claims ‘it’s all in your head’ show them the pictures and ask “does this look like it’s in my head, does it, DOES IT?” scream it in their face should you feel the urge, beat them with a sock full of marbles if you wish, knowing full well the absurdity of your actions matches the absurdity of their statement. This attitude also puts the blame on the sufferer, which is sickening in itself. If you have endometriosis it is not your fault, it’s not like cutting your arm off while juggling chainsaws. It is my firm belief that for most women, the decision on whether or not you will have endometriosis is made before you were even born.

The whole ‘endometriosis is the result of early life psychological trauma’ argument is based on a couple of now widely discredited studies by a research group who really didn’t know what they doing in the first place, but those who find it suits their agenda will trot out this nonsense and cherry pick data to fit their augment, ignore these people, they are idiots. But let’s deconstruct it anyway; let’s imagine that endometriosis was a result of childhood trauma, how would reconcile this with the finding that endometriosis can clearly be a genetic disease? How would you explain endometriosis being found in unborn foetuses? How would you explain that the majority of women with endometriosis haven’t experienced childhood trauma? Some women with endometriosis will have experienced traumatic events in their childhood, but is it right for someone to suggest the two are linked when no evidence exists to support this? I am fortunate enough to have had a (relatively) normal childhood so can only offer my utmost admiration and respect those who have had it so much worse yet find ways in which to get the support they need and cope with what happened to them. Is it not therefore, a metaphorical slap in the face for someone else to come along and tell these brave people that the reason they have endometriosis is because they haven’t coped well enough?

3) If you have minimal disease you’ll only have minimal symptoms

As with so many other statements made about endometriosis, the answer to this one is simply ‘endometriosis doesn’t work that way’. At the very least this myth is based around some logic. If you hear the term ‘advanced disease’ and ‘minimal disease’ you may logically deduce that the advanced disease has the more serious symptoms. The trouble is endometriosis is not a logical disease. There have been a few studies which assessed the severity of symptoms of women with different stages of endometriosis and concluded that stage of the disease is not related to the severity of symptoms. Complicating the issue is the fact that is it’s not just the extent of the disease that leads to pain but the type of disease. If you follow this link you can find descriptions and images of the various types of endometriosis and one thing that may strike you initially is how many different types there are. Deeply infiltrating endometriosis (DIE) is a good type to use as an example of why this myth is false. DIE has been reported as a being significantly associated with severe dysmenorrhoea and the most painful type of endometriotic lesion as well as being involved the painful bowel and bladder symptoms associated with endometriosis. The trouble with DIE is that the lesions themselves can be relatively small and therefore, hard to detect and remove (there is a good free-text article here). DIE is like a garden weed, cut off the leaves and the roots remain, meaning incomplete removal of DIE can lead to a higher likelihood of disease recurrence. Why is DIE so painful? It is thought that, because this type of endometriosis buries into an organ, it puts pressure onto the nerves within the tissue and distorts the structure of the affected organ. This is a particularly significant source of misery when DIE is involved in the bowel.

2) Endometriosis is just bad period pains

I’m not a very good cook, I can just about manage to make cheese on toast without a trip to the burns unit. Therefore, with my limited knowledge on cookery, I don’t walk into restaurants and stand next to the chef saying things like “You’ve over seasoned that”, “I think that steak is overdone” or “that’s not how you make a pie”. The reason I don’t do this is because, as someone who doesn’t know what they are talking about when it comes to cooking, I shouldn’t be professing on that subject. It is very much the same thing whenever you hear someone say “endometriosis is only bad period pain”. Clearly, a person who says this doesn’t know much about endometriosis, they don’t have the disease and have probably never even spent much time in the company of someone who suffers with it. So why are they professing on the subject? Chances are these people just need some educating. Endometriosis is so much more than period pain; a great deal of women with endometriosis experience tremendous pain before, during and after their periods. Some would scoff at this “well its only period pain” they will say, “how painful can it be?” Well of course I couldn’t say, but my mother who suffered at the hands of endometriosis for many years described the pain as “worse than childbirth” so that should shut up any naysayers. But with endometriosis there are different kinds of pain, probably more than other people will experience in their lives. Common examples include: dysmenorrhoea (painful periods), chronic pelvic pain (defined as 3 months of continuous, nonmenstrual pain), dyspareunia (painful sex), dyschezia (painful bowel movements), dysuria (painful urination), back pain, leg pain, and shoulder pain.

The old saying goes, misery loves company, and endometriosis, being a herald of misery, is no exception as there are also co-morbid conditions to consider. Co-morbid conditions are conditions that are frequently found to be more common in women with endometriosis. Some examples of common co-morbid conditions include: Irritable bowel syndrome, fibromyalgia, fibroids, adhesions, migraine, chronic fatigue, interstitial cystitis, excessive menstrual bleeding, depression, anxiety and reduced fertility. The list of reasons why endometriosis is more than just painful periods is as long as my arm and I’ve got very long arms.

1) Pregnancy is a cure for endometriosis

Our number one is something I hear all the time. I don’t know a single endometriosis patient that hasn’t been told this at some point, or at least knows someone who’s heard it. I hear it on the television, I read it in news articles, I hear it from doctors and laymen alike and yet for all its universal saturation in our collective consciousness, the statement “pregnancy is a cure for endometriosis” is bullshit. Where this myth originated from I’m not sure, but it was probably derived from the observation that some women with endometriosis experience temporary suppression of their symptoms during pregnancy. I’ve spoken to a few women who have experienced reduction of symptoms during pregnancy, but I can honestly say I’ve never heard of single case of endometriosis being cured by pregnancy. Most women find that, although you may get symptomatic relief for 9 months, the pain does eventually come back. In point of fact a study of 345 women with endometriosis found that symptoms significantly increased postnatally for first time mothers.

Another major point here is the inappropriateness of this advice. I know several young women, who from the age of 16 were told to get pregnant by their doctors to alleviate the symptoms of endometriosis. Is it ethical or moral to give such advice to young girls? Having a baby should be choice made between loving adults who are emotionally ready for the lifelong commitment, not a quick fix solution to a chronic illness that doesn’t even work anyway! Also, many women with endometriosis suffer with subfertility or infertility, advising them to get pregnant is along the same lines as telling a wheelchair bound person they can cure their paralysis by going for a jog.

Well, that went on for much longer than I anticipated, but hopefully some of it has been enlightening, it is not a complete list of all the bullshit I’ve heard about endometriosis, rather just a collection of the top ten comments I hear most often and infuriate me the most. I hope there will be a time in the future when myths like these are confined to the same section of medical advice as demonic possession as the cause for mental illness. Educating yourself and others about endometriosis is an empowering endeavour and, if you suffer from endometriosis, a necessity. The more you know, the stronger you are, read the evidence, uncover the truth, ignore the bullshit.

March is Endometriosis Awareness Month

2011-03-01T20:06:00.003Z

The title is a bit self explanatory with this one, but yes, endometriosis awareness gets a whole month! Hopefully this will be a time where patients, researchers, doctors and anyone else for that matter can make a difference.

If you want to know what going on near you it’s definitely worth checking out some of the following fine websites:

Endometriosis UK: http://www.endometriosis-uk.org/?gclid=CJ70wc-VrqcCFcod4Qod5Ey5CA

And their facebook page: http://www.facebook.com/endometriosisuk?ref=ts

Endometriosis Research Centre Facebook Page: http://www.facebook.com/home.php#!/EndoResCenter

Here is a link to a page listing the many international endometriosis support groups:
http://www.endometriosis.org/support.html

Hopefully by digging deeper into the mystery that is endometriosis you may find something that inspires, informs or even incenses. Just never be afraid to ask questions.

Not so Great Lakes?

2011-03-01T16:57:00.001Z

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.

Tick, Tock, Tick, Tock

2011-01-26T13:27:00.002Z

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............

The kids aren't alright

2011-01-14T12:54:00.002Z

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.

In the news this week

2010-12-15T15:21:00.003Z

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.

On the Origin

2010-11-17T12:51:00.002Z

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.

A little bit more good news

2010-11-09T12:47:00.000Z

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.

Endometriosis and Parkinson’s disease

2010-10-25T17:00:00.000+01:00

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

Runaround (again)

2010-10-11T10:17:00.003+01:00

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.

Depression Survey Results

2010-08-18T15:25:00.000+01:00

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

Endo, endo everywhere

2010-07-12T11:03:00.001+01:00

Endometriosis is a condition that you usually associate with the pelvic organs (the uterus, ovaries, fallopian tubes etc); however it is not exclusive to these areas. Endometriosis can be found pretty much anywhere around the body, though cases of extra pelvic endo are rare. Below is a list of sites in which endo has been found, although I’ve tried to make the list as complete as possible I admit I may have missed some items (feel free to add any in the comment box below!). I’ve put the medical names of each site in brackets in case anyone would like to further research these areas.

The Brain (cerebral)
The Heart (myocardial)
The Lungs (pulmonary or catamenial pneumothorax/hemothorax/hemoptysis)
The Diaphragm
The Liver (hepatic)
The Stomach (gastric)
The Kidney (renal)
The Pancreas (pancreatic)
The Intestines (ileum or colon)
The Appendix (appendiceal)
The Navel/Bellybutton (umbilicus)
Tear Ducts (nasolacrimal)
The Nose (nasal)
The Skin (cutaneous)
The Buttocks (gluteal)
The Leg Muscle (soleus and gastrocnemius)

Now if you read any of the above links a frequent comment you will probably notice relates to the rarity of endometriosis outside the pelvis. While it is true extra pelvic endometriosis is rare, it can be quite serious. Extra pelvic endometriosis can become malignant, although again this is quite rare. The case of endo of the heart reported above proved to be fatal. If you read the case of gluteal endo reported above it turned out the woman was left permanently disabled. Generally the way to recognise extra pelvic endo is if you find there is any unusual pain or bleeding that occurs in regular cycles, so it pays to be wary, but not paranoid!