Endometriosis Awareness Month: Part 6

This will be the final part of my endometriosis awareness month posting marathon; over the last few weeks I’ve noticed I’ve gained a lot more followers, which is great, so a ‘welcome’ and ‘thank you’ is deserved to new and old followers alike. I hope that I’ve managed to impart some useful knowledge over the last month because I’ve learned so much from women with endo over the years.

For the last post of this month I’m going to do a quick rundown of some of the top endo-related research highlights I haven’t had a chance to cover in full.

A study from Italy examined the incidence of endometriosis in the area of Piedmont and found that women from the South and Central provinces were at, in some cases, a 30% increase in risk of endometriosis than those women in the South-West. The authors of this study suggested that heavier pollution in these regions could be a contributing factor; however it is also possible that different populations in the different provinces may carry certain genetic mutations that make them more susceptible to endometriosis.

Another study from Italy found that women with endometriosis were more likely to be right handed and less likely to be left or mixed handed. Apparently handedness is determined whilst you are still in the womb and due to exposure to certain hormones, so there may be something to that. This study also found that there was no association with birth order, their mother’s age, smoking habits, weight gain or morning sickness. There was also no association between endo and having a low birth weight, being premature or whether or not you were breast fed.

Some good news for a change in the findings from a study in Denmark. This study looked at medical records for women diagnosed with endometriosis and registered to the Danish Hospital Discharge Register from 1977-2007, encompassing a grand total of 37,661 women, and checked to see what other medical conditions they presented with. This, rather large, analysis concluded that women with endometriosis were not at an increased risk of multiple sclerosis, systemic lupus, erythematosus, or Sjogren syndrome, yay!

Urinary tract endometriosis (UTE) was the subject for this article from France, which found that of the 221 women selected to undergo laparoscopic surgery for severe endometriosis, almost a fifth had some involvement of endometriosis on the urinary tract. Unsurprisingly the most common symptoms of women with UTE were dysuria (painful urination), blood in the urine and frequent need for urination. Fortunately, the authors noted that surgical treatment was very effective and diagnosing UTE can even be done with a non-invasive MRI scan.

To California now and a report of endometriosis found in the para-aortic lymph node (which is in the centre of your body, on roughly the same level as the kidneys) in a pregnant woman with a previous history of ovarian endometriosis. The authors state that this could be evidence that endometriosis can spread via the lymphatic system, however as this was the first ever reported case of endometriosis in this location, drawing such conclusions may be premature.

And finally, the award for the most self-explanatory article title goes to this paper.

Wishing you all well and see you again in April!

Endometriosis Awareness Month: Part 5

Hot on the heels of a previous report comes another study examining the burden of endometriosis on the individual and society as a whole. This one is a bit more in depth though, taking information from 909 women from 10 different countries including: Belgium, Denmark, Germany, Hungary, Italy, Netherlands, Switzerland, UK and USA. The women who took part in this study were given specially designed questionnaires that would assess the impact of endometriosis on their lives and included questions on a number of subjects from health care costs to work loss and quality of life. What makes this study different then from all the previous studies that have examined the costs of endometriosis? Well, this study is the only one I know of that has taken women from multiple countries, also other studies have usually only focussed on one aspect, such as health care or work productivity, never both.

But enough of the details, what did this study actually discover? The main finding from this study was a number, €9,579, equivalent to $12,635 or £7,990; this was the average cost of endometriosis per woman, per year. This breaks down to an average €6298 lost in work productivity and an average €3113 for health care costs (which is similar to health care costs of diabetes, Crohn’s disease and rheumatoid arthritis). So with those numbers in mind let’s do some maths. If the average total cost of endometriosis per woman is £7,990 (I’ll work in British pounds because that’s what I’ve got in my pocket) and the UK has approximately two million endo sufferers, this means endometriosis costs the UK economy around £15,980,000,000 per year (The authors of the study reported it as £8.3billion, but they estimated the prevalence at only 7%). That is what we technically call, in the scientific community, a shitload of money. Feel free to re-do the calculation for your own country and sit back and be shocked by how much money is being lost by governments who ignore endometriosis.

Endometriosis Awareness Month: Part 4

Brains are funny things, all grey and squishy. Inside the roughly 3lbs of brain you have is held all your accumulated memories, dreams, fears, loves and just about everything that makes you, you. But for all its complexity and sophistication the human brain is far from a perfect construct. Whilst it is the source of all our joy, it is also the reason we feel pain, and this is especially not good if you’re in pain for a significant portion of your waking life, for example if you happen to suffer from a chronic condition like endometriosis.

What then, is the effect of pain on the brain? If you have suffered from pain for any length of time then you’ll know that the relentless assault of pain, and all the limitations it puts on your body, can have a deleterious effect on you mental condition. It will probably come as little surprise to you to learn that studies have shown that women with endometriosis present with a very high levels of depressive symptoms. The study in the link above found that 86.5% of women with endo presented with depressive symptoms (22.1% mild, 31.7% moderate, 32.7% severe) and 87.5% presented anxiety (24% minor, 63.5% major).

Does this mean that the brains of women with endometriosis function in a unique way? Is there such a thing as an ‘endo brain’, a specific psychological profile, which is created by suffering long-term with the condition? According to one study, no there isn’t. This study took women suffering from chronic pelvic pain (CPP) either due to endometriosis (30 women), myofascial abdominal/pelvic pain (70 women) or pelvic adhesions (38 women). The authors then asked the women to complete a number of ‘inventories’ (basically questionnaires) asking them about factors such as demographic status, pain experience and symptoms, disability caused by pain, depressive symptoms, level of affective distress, satisfaction with pain treatment and satisfaction with their relationships. So overall it was a pretty comprehensive, and what they found was that the emotional, social and psychological distress caused by endometriosis was not significantly different to that caused by other chronic pain conditions.

This is actually a good thing to know, because it’s a way to shut up any of the idiots who think endometriosis is the result of psychological disturbance. If we can show that the suffering experienced by women with endometriosis is so similar to that of women with other chronic conditions, then it is impossible to say it is ‘all in your head’. Because if that were the case, then the suffering experienced by all those people with other chronic pain conditions must be ‘all in their head’ too.

Is this finding at odds then, with another recent study which found that a greater proportion of women with endometriosis presented with bipolar disorder? Perhaps, but there are a lot of factors to consider; for example, we need to examine what bipolar disorder is. There are good websites giving descriptions of bipolar disorder here and here which basically describe it as rapid, extreme swings of mood from feeling very high to feeling very low. Now we need to consider whether there is some neurological alteration in women with endometriosis that makes them more susceptible to bipolar disorder, or could it be that there is something about living with endometriosis that causes these extreme mood swings? It is know that the steroidal, in particular hormonal, medications used to treat endometriosis can lead to extreme mood swings and living with a chronic pain condition is bound to affect the suffers mental state (as we have seen from the studies I’ve mentioned previously, and just through plain old common sense really).

So it’s more likely that for the majority of women with endometriosis who present with symptoms indicative of bipolar disorder, the moods swings they feel are due to the conditions of living with the disease (of course, there are women with endo who have the symptoms of bipolar disorder for other reasons).The only way to tell for sure would be to do a follow-up study, where women who have been successfully treated for endometriosis are tested again to see if the signs of bipolar disorder remain after symptoms have abated.

In conclusion then; you’re not mad, it’s not all in your head and if you live with a chronic pain condition you may get depressed (well there’s a shocking revelation).

Endometriosis Awareness Month: Part 3

At what age did the symptoms of your endometriosis appear? A lot of women I’ve spoken to have told me that their symptoms appeared not long after they started their periods, and certainly, a great deal of women with endo find their symptoms were in full force by the end of adolescence. Of course, no matter when the symptoms began, the most universal challenge women with endometriosis face, is getting those symptoms taken seriously so a diagnosis can be made. Therefore, wouldn’t it be great if there were a set of guidelines regarding pelvic pain that doctors could use to flag up potential cases of endometriosis in young girls to speed up the whole diagnostic process.

Hopefully that is a reality not far off. Several studies published over the last few years have tried to formulate a procedure that will increase accurate diagnoses of pelvic pathology in young girls. It goes something like this; if girl complains of excessively painful menses, first off give her non-steroidal anti-inflammatory painkillers (NSAIDs) for three months. If these fail to work give the patient oral contraceptives and suggest referral to a gynaecological specialist for further assessment. That’s about it really, pretty simple. Of course it’s not that simple, because we must educate the patient (and doctors) about the different kinds of pain girls can present with.

For example, the most common pain symptom in women with endometriosis is dysmenorrhoea, or excessively painful periods. But what classes as excessively painful? Yes, pain is subjective, but if the pain is becoming debilitating (i.e. it is forcing you to take time off from school/work on a regular basis) then this is excessive and needs to be taken seriously and investigated further.

Then there is also chronic pelvic pain (CPP). This is pain that occurs in your pelvic area, either with or without your period, that lasts for over 6 months. If a girl is presenting with both CPP and dysmenorrhoea, this should raise a red flag with any doctor worth his salt.

Then we come to the ‘dys’s’, these are other pain symptoms frequently associated with endometriosis, such as dyspareunia (painful sex), dyschezia (painful bowel movements) and dysuria (painful urination). Any of these pain symptoms, especially if they occur more frequently during menses, are all indicators for doctors to be aware of it they are to get a rapid diagnosis and prevent undue suffering.

But why might some doctors be reluctant to refer girls to specialists? There is the age old “I know better, just get on with it” ignorant attitude that many women have to deal with, but doctors are also being put under pressure, especially these days, not to refer girls to specialists because of the cost implications, but let’s think about it logically for a second. If a girl is presenting with pain symptoms indicative of endometriosis at a young age, surely it would be better to send her to a specialist as soon as possible to get the problem treated whilst she is still young, rather than waiting until she is older and more likely to need multiple surgeries/treatments.

Getting endometriosis treated quickly not only makes more sense from a patient centred approach, it also makes sense from an economic approach, especially when you consider the impact endometriosis in adult women has. Let’s put it in political (i.e. monetary) terms. A study from Canada estimated the cost of endometriosis to be $5,200 per patient, per year for surgically confirmed cases of endometriosis. This adds up to a hefty $1.8 billion annually in Canada just for surgically confirmed cases of endometriosis. Where are these costs being incurred though? Obviously there are the medical costs, but endometriosis is incapacitating, so it affects all aspects of a woman’s life. A study from Puerto Rico amply demonstrates this by assessing the quality of life and work productivity of women with endometriosis. What they found was that women with endometriosis presenting with quality of life scores “denoting statistically significant disability in the physical and mental health components”. I should probably point out that when they say significant disability in the mental health component, they are referring to mental aspects of the disease such as stress and depression, they’re not suggesting you’re all mentally handicapped!

The study goes on to say women with endometriosis lose, on average, one day a week in work time due to the disease symptoms. Lose 13% of work time, lose 64% of work productivity, have a 65% impairment of work and a 60% impairment of daily activities.

All those billions of dollars lost, all those hours of life spend needlessly suffering, all that time lost, all those lives ruined; where does all this lead back to? To the diagnostic and treatment delays in endometriosis. If the disease is diagnosed and treated early and effectively we can begin to eradicate the negative impact it has. So, to all those people, doctors, nurses, family, partners, anyone, who dismisses and marginalises the suffering women with endometriosis must endure, you are not only catastrophically harming the life of an individual, you are damaging society as a whole.

Endometriosis Awareness Month: Part 2

Onto an article so fresh off the presses its publication date is listed as April. This is a study conducted at the Yale University School of Medicine in the US and it examines the occurrence of allergies in women with endometriosis. This study took 501 women with surgically confirmed endometriosis and 188 women without endo and compared the occurrence and history of allergies in the two groups. What this study found was that women with endometriosis are a little over four times more likely to suffer from allergies than women without endo. Women with endo were significantly more likely to suffer from asthma, sinus allergic rhinitis and have a stronger family history of allergies.

Why might this be the case? Unfortunately, it’s not entirely clear at the moment; we know that in women with endometriosis the immune system can malfunction, either by under or over reacting. When it under reacts it allows endometriotic cells to grow, whereas normally the immune system should destroy them. When it overreacts it can produce autoantibodies, which are basically markers that tell the body to attack itself, which has implications for fertility.

Unfortunately the good news doesn’t end there. Another study from Denmark found that women with endometriosis were also more likely to suffer from inflammatory bowel disease, Crohn’s disease and ulcerative colitis. This study took patient records from 1977-2007, amassing an impressive 37,661 records in total, to look at the occurrence of these conditions in women with endometriosis. Although the increase in risk was relatively small (increasing less than twofold), the reason/s why women with endo are more susceptible to these conditions is also not (surprise, surprise) completely clear. It could be that the same immune dysfunctions that cause the increase in allergies among women with endo are responsible. If anyone finds out for certain though, I’ll make sure you’re the first to know.

Endometriosis Awareness Month: Part1

Well we are now fully into the swing of endometriosis awareness month so let’s kick things off with some posts.

First off there is study from China looking at how the type and position of endometriosis can determine the symptoms. This study took 177 women with deeply infiltrating endometriosis (DIE) and 177 women with non-DIE and compared their symptoms and what their disease looked like. This is a summary of they found:

• Women with DIE had been suffering with their symptoms for an average of 13.8 years compared to 5.2 years for women with non-DIE

• The infertility rate for both DIE and non-DIE sufferers was about the same (36% and 35% respectively)

• Women with DIE were more likely to have a higher stage of the endometriosis (58.8% of women with DIE were stage IV; the majority of the non-DIE women were stage III, 43.5%)

• Severe dysmenorrhoea, chronic pelvic pain, deep dyspareunia, dyschezia and dysuria were all more common in women with DIE. It’s interesting that dysuria (painful urination) was only found in the DIE patients (although, this study only looked at a relatively small number of women).

• Women with non-DIE were more likely to have endometriotic lesions on the surface of the uterus, bladder peritoneum and the broad ligament. Women with DIE were more likely to have lesions on the uterosacral ligaments, fallopian tubes, ureter and the rectum. Women with DIE were also much more likely to have obliteration of the cul-de-sac (44.6% compared to 22% for non-DIE), which may explain the higher frequency of dyspareunia.

• Women with DIE were also more likely to also have adenomyosis than those with non-DIE (15.8% compared to 4.7%, respectively)

• If the patient also had ovarian endometriotic cysts, women with DIE were more likely to have them on both ovaries (35.2%), whereas women with non-DIE were more likely to have them just on one side (31.6% on the left, 22.6% on the right side).

These types of studies are potentially very useful and much larger studies like this are needed. This is because, if a certain type/location of endometriotic lesions are associated with certain symptoms, this should give surgeons a better idea of where to look for the disease, thus increasing the accuracy of diagnosis. More posts coming soon!

March is Endometriosis Awareness Month

It’s the 1st of March and that gives me dual cause for celebration. On the one hand I get to revel in my Welsh heritage celebrating St David’s Day, but on a more relevant note, it’s also the beginning of endometriosis awareness month.

In recognition of this I’ll be posting far more often than usual over the next month trying to get as much info on endo out there to my readers as I can. In the meantime why not head on over the Endometriosis Research Centre homepage or discussion page to learn more about what is going on during this month.