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.

Not so Great Lakes?

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

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

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.