Trendy

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

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

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

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

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

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

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.