Thursday, 24 December 2009

The Puerto Rican Connection

There have been several studies that have examined the way in which endometriosis effects the lives of women throughout a few different countries. However, most of these studies have come from Western nations, mainly the UK and the USA. Data on the incidence and symptoms of endometriosis throughout the rest of the world is fairly scarce and it would be presumptuous to assume that endometriosis affects people in the same way all over the world. So it is excellent news to find a recent study published by the Ponce school of medicine in Puerto Rico. Just in case you were wondering Puerto Rico is an island nation (although technically an archipelago) just to the East of the Dominican Republic and North of Venezuela. What is very interesting is that this is one of the few studies I have come across that deals with endometriosis in a predominately Hispanic population.

It is of great importance to collect as much data as possible on endometriosis from as many countries as possible. There are several reasons why this is so important, for example it lets politicians and world leaders recognise that this disease exists everywhere and is not the sole burden of a select few countries. Also imagine if it was found that women in a certain population or country were found to have a very low incidence of endometriosis. a finding such as this may finally tell us why some women are more susceptible to the disease than others and may even provide clues on how to prevent the disease.

But I digress, back to the Puerto Rican study. I’ll give you a brief overview of what the study found and highlight points of interest. This study surveyed 108 women with endometriosis and these were the main findings.

40% of the women reported a family history of endometriosis. This is interesting as it is much larger than other countries. For example in Brazil it was reported as 8.9%, Japan 8.8% and the United States 8.1%.

The menstrual characteristics of the women surveyed seemed fairly normal, starting their periods at around 11 ½ years old and with an average cycle length of 28.5 days, 5.5 days of menstruation.

The symptoms of endometriosis in these women seem to echo those found around the world. The majority of women experienced dysmenorrhoea (94.4%), incapacitating pain (74.3%), Dyspareunia (70.1%) and sub infertility (63.6%).

Other symptoms that coexisted with those mentioned above included: Back and leg pain (75.7%), gastrointestinal upsets (69.2%), dizziness/headaches (60.7%), depression (51.4%), fatigue (44.9%), dyschezia (painful bowel movements, 44.9%), vaginal pain (35.5%) and dysuria (painful urination, 22.4%).

Depressingly the length of time to diagnosis seems no different in Puerto Rico, with the average time to be diagnosed around 8.9 years, which is quite typical, sadly.

Although this is an enlightening study, it is not without its faults. From a surveying point of view not many people took part, and those that did have more severe forms of endometriosis (although it has long been recognised that stage of the disease bares little correlation to the severity of symptoms). Also as with any survey you are relying on people judging things from memory, which if they happened a long time ago, may not be entirely accurate. Despite this we are in desperate need for more studies such as this from countries all over the world and it is also interesting to see that even in countries as far away as the UK and Puerto Rico, women’s experiences of endometriosis remain very similar.

Wednesday, 11 November 2009


It may be a lot of effort and I know sometimes it’s hard to be bothered, but we all know a decent amount of exercise does you the world of good. Exercise, in combination with a good diet, reduces the risk of all sorts of unpleasant diseases and prolongs your life. So it comes as little surprise that some reports have said that regular exercise can reduce your risk of endometriosis by up to 40-80%. The rationale behind this theory comes from evidence showing regular exercise reduces the amount of estrogen in the body. However, as a recent study rightly points out, if a woman is experiencing the debilitating pain and fatigue associated with endometriosis prior to diagnosis she is much less likely to be inclined to pop down the gym for a training session, thereby skewing the aforementioned results.

The latest study on endometriosis and exercise comes from the Harvard Medical School in Boston, which conducted a prospective cohort study from 1989 onwards on a total of 102,197 women, of which 2703 were laparoscopically confirmed with endometriosis. The study followed the women’s amount and level of exercise over the years and also took into consideration factors such as BMI, smoking, parity (number of children), contraceptive use, menstrual history etc.

The overall results of the study found that regular exercise did not decrease the risk of endometriosis as much as previously thought. That said, regular exercise did appear to reduce the risk of endometriosis, just by a more modest factor. So in conclusion exercise is a good thing, there is no substitution for it, you can’t buy it in pill form so try and do it whenever possible. Of course I’m not talking about running marathons (although kudos to you if you can!). Even gentle exercise, done regularly, will grant you benefits, it may not reduce your risk of endometriosis by as much as 80% but as one particular faceless, all consuming ubiquitous supermarket chain says “every little helps”.

Wednesday, 28 October 2009


Just wanted to say sorry for not posting anything for a while, between my day job and writing my thesis I haven’t had much time to do much else. Anyway, enough of my excuse making, I thought I’d give a quick update on what has been going on in the field of endometriosis research in the past couple of weeks. Here is a quick selection of some of the more interesting articles published.

Since my last post on the 8th of September there have been 96 papers published on endometriosis with a wide variety of subjects (according to PubMed).

There have been several publications on the link between ovarian cancer and endometriosis. There have even been a few papers on the involvement of epigenetic mechanisms in endometriosis (my specialist field).

There was also a paper which found 30% of the patients with endometriosis they examined also had irritable bowel syndrome or constipation.

Aromatase inhibitors were found to be effective at reducing the proliferation of endometriotic implants in a mouse model.

Phthalates, which are artificial compounds thought to act as an oestrogen and very hard to pronounce, were found to be no higher in the urine of Japanese women with endometriosis when compared to controls. However, this study falls into a trap that is a personal pet peeve of mine, which is analysing the levels of these compounds in women who already have the disease. A better study design would be to analyse the frequency of endometriosis either in the children of women exposed to artificial oestrogenic compounds or in women exposed at a very young age.

Contrary to the above, levels of another type of synthetic oestrogen, Bisphenol A and B, were found to be higher in the blood serum of women with endometriosis.

IVF treatment does not increase the risk of endometriosis recurrence.

Endometriosis was diagnosed in two sisters with Glanzmann's thrombasthenia (GT), a very rare blood clotting disorder which leads to prolonged bleeding. This is considered significant as women with GT are more likely to have prolonged periods of menstrual bleeding, a factor which is thought to increase the susceptibility to endometriosis. This perhaps garnishes some support for the retrograde menstruation origin theory of endometriosis.

Apparently marmosets (a type of small New World monkey) can develop endometriosis.

If you have are of the type A blood group, you are 2.9 fold more at risk of endometriosis. The relationship between blood groups and endometriosis remains to be explained.

It appears that the normal endometrium of women with endometriosis has increased proliferative activity, meaning that it grows quicker than normal. What could be causing this increased proliferation remains to be found.

Pregnant women with endometriosis are apparently more at risk of suffering spontaneous hemoperitoneum (bleeding into the peritoneal cavity). However, I should point out that hemoperitoneum is rare.

Interesting case report of a 42 year old woman who, even after a hysterectomy and right oopherectomy, still presented with monthly bleeding. The cause was found to be an endometriotic cyst on the left ovary.

That is the news for now, hopefully I’ll get to post more soon.

Tuesday, 8 September 2009

Mysterious bowels

Endometriosis is well known, especially by the sufferer, to cause a myriad of symptoms. Apart from the obvious pelvic pain, gastrointestinal symptoms appear to be the next most common. This can often lead a patient with endometriosis to think that maybe the disease is present on the bowel.

A new study has been published recently that may allay some of those fears though. A paper published in the Australian & New Zealand Journal of Obstetrics and Gynaecology. This study found 290 women with endometriosis of which 90% had gastrointestinal symptoms. The most common symptom was bloating. Of the 290 women, only 7.6% actually endometriosis on the bowel which is a surprisingly small number. Of course this raises the problem of why, if there is no endometriosis on the bowel, do patients experience bowel problems? I don’t have the answer myself and I can only theorise upon what it might be. It could be that adhesions, a separate entity to endometriosis, are present on the bowel which may cause problems. It could be that problems with the immune system that are often present in women with endometriosis, play a role in altering the function of the bowel. It still remains a bit of a mystery.

Oh and it will probably come as no surprise to any of you that 76 of the aforementioned women were originally misdiagnosed with irritable bowel syndrome.

Tuesday, 25 August 2009

Having the Nerve

I think anyone that has been for a laparoscopy to diagnose endometriosis has at some point wondered “isn’t there an easier way?” Unfortunately the answer is ‘no’, which comes as somewhat of a surprise and disappointment even to me. There’s been a great increase in endometriosis research over the last few years (believe it or not) and yet not much has come from it. There are a few new treatment options (which have mostly been retro-designed from cancer therapies) and slightly improved use of imaging techniques such as Ultrasound and MRI, but that’s about it. The average time for diagnosing endometriosis is still somewhere between 8 and 9 years which is wholly unacceptable. It seems that although we have a better understanding of the disease, that knowledge isn’t being put to practical use.

However, there have been some promising new developments that have come to light recently, in particular, there’s been some news about a new diagnostic method for endometriosis. Although I am naturally begrudged to provide a link to a media interpretation of scientific information, a good report on the subject can be found here on the BBC website. The BBC report on one article published in Human Reproduction, but there are actually two, which you can see here and here. Both articles report on the same subject and draw very similar conclusions.

It is all about a new ‘semi-invasive’ diagnostic test for endometriosis that would take a similar form to that of a smear test (albeit a bit more invasive), but it’s called an endometrial biopsy, follow this link for more info on that. What will then happen is that someone will look at the biopsy and count the number of small nerve fibres. The basic finding from the aforementioned studies was that upon analysing these endometrial biopsies, women with endometriosis had significantly more nerve fibres in their endometrium, up to 14 times higher, than women without endo. The good thing about this is that it is a pretty simple test to do and results shouldn’t take long to get. Also the preliminary findings indicate that this test is quite accurate. One report stated 97.5% accuracy and the other stated 91% accuracy, but they did use different methods.

Although these are encouraging results they were only small studies, much more investigation in larger groups of women is needed before this test can be widely adopted. The other problem is that this new test cannot replace a laparoscopy. This test will only be able to tell you if you have endometriosis, a laparoscopy would still have to be performed to tell what the stage the endometriosis is at, where the endometriosis is, and if there are any adhesions or other complications. Nevertheless I can see a promising future for this new test as a screening method. It could be used in women who have only just started presenting with symptoms, or for young women with a family history of endometriosis, allowing for earlier medical intervention, hopefully drastically reducing the delay in diagnosis.

Wednesday, 12 August 2009

Trial and Error

I’ve noticed at the time of writing this that there seems to be a bit of buzz going round the internet concerning Chinese herbal medicine (CHM) for the treatment of endometriosis. In particular there are some less than credible sources suggesting that CHM is better than conventional medicine for treating endometriosis related symptoms. The report on the website is perhaps one of the worst offenders, starting as they do the title “Vitamins and Chinese Herbs Prove More Effective than Drugs for Endometriosis”. A bold statement I think you’ll agree, so you’d expect they have some serious evidence to back up their claim, well let’s see.

But before I go into the report, I’d like to take a bit of time to show you a few things from that same website. They have some cartoons on this website, fair enough I like cartoons I draw them myself, so let’s see what they’ve drawn. Well take a look at this one and this one if you would like to see the true face of this website. They compare the use of chemotherapy to the gassing of the Jews during the holocaust. I am literally stunned (Oh and they lazily recycled that one from this one about mental health medication). This is just so you know what sort of people we’re dealing with here, so let’s move onto their article on endometriosis before I rupture something.

The article starts off by reporting on a recent publication from the Cochrane Database of Systematic Reviews. The Cochrane group is a large group of people from a wide variety of backgrounds who take in large amounts of studies on a particular subject (including a large amount of studies on drug effectiveness) and thoroughly review the evidence for and against, in an unbiased and methodological manner. It is for this reason that a Cochrane review is thought by many, including myself, to be a definitive source of accurate information. In this instance the Cochrane group have reviewed the evidence for the use of CHM for the treatment of endometriosis, the abstract from which you can find here. reports that “Chinese herbs were found to relieve post-surgical symptoms more effectively than the conventional hormone-based drug therapies, with a nearly 96% success rate of complete symptom relief, as compared to only 10% with danazol. The herbs caused virtually no side effects, while a significant number taking hormone medication suffered increased period pain and irregular periods, acne, fatigue, weight gain and evidence of liver damage.” I’m not sure where they are getting those statistics, because there is nothing like that on the Cochrane review.

If you would like to hear what the review actually said, here it is. The review only focussed on two clinical trials of CHM for endometriosis treatment and even these had major flaws in them. For example, although the trials were randomised, neither of them was placebo controlled or double blind, which leaves huge gaps for errors to creep in. Just in case you aren’t familiar with clinical trials here is the criteria a clinical trial has to fulfil in order to be deemed accurate and unbiased.

Large sample size: This means that the more patients you enrol to test a new medicine the better, and more accurate your conclusions will be.

It has be placebo controlled: This means that the people trying the medicine are divided into two groups, one group gets the real medicine, the other group gets a dummy medicine (placebo). This is to make sure any effects people get from the medicine aren’t just random effects you could get from a placebo.

It has to be randomised: This means that patients are randomly assigned to the real medicine or placebo group. This is to stop doctors selecting the patients they think will respond best to the real medicine.

It has to be double blind: This means that neither the doctors nor the patients know whether they are getting the real medicine or the placebo.

These are not just arbitrary rules dreamed up one day by some guy in his garden shed either. These criteria are the result of hundreds of years of clinical trial and error and much personal suffering.

So let’s move on to what these CHM trials found, I’ll quote directly from the abstract so as not to put any personal spin on things “There was no evidence of a significant difference in rates of symptomatic relief between CHM and gestrinone administered subsequent to laparoscopic surgery”.

Ok so what about the effect on fertility, claimed “Women taking the Chinese herbal treatments were also 10% more likely to become pregnant following surgery than those taking prescription medication”.

This is what the Cochrane review actually said “There was no significant difference between the CHM and gestrinone groups with regard to the total pregnancy rate”.

And here is what the Cochrane review said about the effects of CHM compared to Danazol “Oral plus enema administration of CHM showed a greater reduction in average dysmenorrhoea pain scores than did danazol”. So there is some positive news about the effect of CHM, however we must remember that these trials were neither placebo controlled nor double blind, so can we really take them seriously? doesn’t stop at CHM either, so neither shall I. They go on to report on the use of Pycnogenol, an extract from the French maritime pine bark for the treatment of endometriosis. proudly states “Pcynogenol, was found to decrease symptoms of endometriosis by 33% when used for nearly a year after surgery. In the study, patients took 30 mg capsules of Pycnogel twice daily for 48 weeks immediately after morning and evening meals. The treatment was found to have reduced all symptoms from severe to moderate within four weeks”. That is a direct copy and paste from the website, by the way its spelt ‘Pycnogenol’.

Here is a link to the abstract from the paper they are referencing, which compared the use of Pycnogenol with a Gn-RHa (leuprorelin). There is no mention of Pycnogenol decreasing symptoms by 33% or being effective after 4 weeks. This is what the paper does say though “Treatment with Pycnogenol slowly but steadily reduced the symptom scores. Treatment with Gn-RHa reduced the scores more efficiently; however, 24 weeks after the end of treatment, the scores suggested a recurrence of signs”. Not a very convincing incitement to use Pycnogenol I think you’ll agree. goes on the talk about the use of vitamins for the treatment of endometriosis. They say “Vitamin combinations have also been shown to be an effective therapy for endometriosis. Also in 2007, Italian researchers enrolled 234 women to assess the effectiveness of nutrition versus drug treatment for six months after surgery.Both the nutritional treatment, which included vitamins (B6, A, C and E), minerals (calcium, magnesium, selenium, zinc and iron), omega-3 and omega-6 fatty acids, as well as probiotic bacteria preparations, and the drug treatment were found to be effective in reducing menstrual pain, pelvic pain and pain during sexual intercourse. However, only the drug treatment was found to increase the risk of bone thinning and menopausal symptoms.”

Again here is a link to the article they are referencing, which compared the use of hormone therapy, dietary therapy or placebo therapy for postoperative symptoms. This is what they found “Patients treated with postoperative hormonal suppression therapy showed less visual analogue scale scores for dysmenorrhoea than patients of the other groups. Hormonal suppression therapy and dietary supplementation were equally effective in reducing nonmenstrual pelvic pain. Surgery plus placebo showed significative decrease in dyspareunia scores. Postoperative medical and dietary therapy allowed a better quality of life than placebo”. Look back at the quote from, especially the part where they mention dietary therapy and hormonal therapy were equally as good at reducing menstrual pain. Then re-read the second sentence from the quote directly above, notice anything innacurate? Also notice that in no instance was dietary therapy alone better than hormone therapy. Another very interesting point is the comparative cost of both hormonal and dietary therapy. Take into consideration that the hormone therapy is just one tablet a day, whereas dietary therapy consists of tablets and pills for vitamins, minerals, fish oils and pro-biotic bacteria. Guess which one costs you more. Oh and kindly provides you with links to its affiliates who sell books on vitamins and nutritional supplements for you to buy, how kind.

I should probably point out that I am in no way against the use of Chinese herbal medicine or other natural medicines, if you have tried it and it works for you, that’s fantastic. What I am against is people or organisations manipulating or fabricating information in order to garnish support for their own twisted propaganda or to increase their own profits. Something that conventional and alternative medicine is both guilty of. Because when ideological one-upmanship and profiteering takes precedent over patient wellbeing do you know who loses out? You, the sufferer, that’s who.

Monday, 13 July 2009

Round in Circles

That’s what it feels like sometimes when dealing with endometriosis, like you’re in a boat with an oar on only one side, just paddling away but ultimately going no-where. Then hurray! Someone throws you another oar, but it’s bigger than the other one so you end up moving forward slightly but still round in circles. What you really need is an outboard motor of some kind, or maybe some sails....sorry I seem to have lost where I was going with that metaphor. Anyway, the oars in this case represent the two big conflicting ideas about where endometriosis comes from, namely retrograde menstruation and coelomic metaplasia. I’ve spoken about these conflicting notions before along with the theory of mullerianosis back in May and how there is evidence for both cases.

In one corner we have the stalwart theory of retrograde menstruation, which is generally accepted as how endometriosis comes into being, and there is evidence to support this. The fact that endometriosis bares such resemblance to normal endometrium, that endometriosis is found most frequently on the pelvic organs and experimental evidence which reported that forced surgical induction of retrograde menstruation in monkeys led to the development of endometriosis in 50% of cases.

In the other corner is coelomic metaplasia, which suggests that there are cells that already exist all throughout the body that can transform into functional endometrium given the correct stimulus. This theory best explains how endometriosis can arise in organs such as the brain and lungs and even the rare cases of endometriosis in males.

A body blow has just been dealt to retrograde menstruation in the form of a study that has just been published in the Journal of Paediatric and Adolescent Gynaecology. This study reported a case of endometriosis in a 20 year old girl who complained of serious pelvic pains. That’s nothing exceptional in itself, until you know that the girl also had Mayer-Rokitansky-Küster-Hauser syndrome, mercifully also known as MRKH. MRKH is characterised by the incomplete development of the female reproductive organs, in this case the girl did not have a uterus. Therefore, retrograde menstruation would have been impossible and cannot account for the development of her endometriosis, but coelomic metaplasia could. This round goes to coelomic metaplasia.

You’ll be glad to hear that this story has a happy ending though. The girl in question underwent electrocautery to destroy her endometriosis and was placed on oral contraceptives to reduce her symptoms, which significantly reduced her pain.

So the retrograde menstruation/coelomic metaplasia debate looks like it will have no resolve just yet. Nevermind, just keep on paddling.

Wednesday, 8 July 2009


Endometriosis, like most living things and vampires, needs blood to survive. Those patches of endometriosis that grow within people need a constant blood supply because they grow at an accelerated rate. If you look at this picture you can see a blackish endometriotic implant and lots of little blood vessels leading up to it like some sanguine road map. The tricky thing about endometriosis is that it can form its own blood supply, generating new blood vessels from existing ones, a process called angiogenesis. This is one of the reasons endometriosis is so persistent, it’s one of the same tricks tumours use to survive.

Of course knowing this means it may be possible to use drugs that inhibit angiogenesis to effectively ‘starve’ the endometriosis of its blood supply. This has been the focus of quite a bit of research over the last few years with some studies looking at drugs that inhibit the growth of new blood vessels as a possible new therapy for endometriosis. Actual data on human trails is hard to come by, but what has been done is quite positive. One study found that treating women with a combination of Goserelin (a GnRH analogue) and Thalidomide (yes, thalidomide) caused regression of ovarian endometriotic cysts in 8 out of 10 cases after a 6 month course of treatment. Now I will be the first to admit this is a very preliminary and quite small study and I do have some reservations about the design of the study, but the results are encouraging nevertheless.

Most other work testing angiogenesis inhibitors for endometriosis is done on animal models, usually mice or rats. The results of these studies has also been supportive of the use of angiogenesis inhibitors for the treatment of endometriosis, most recently there’s been a study published very recently that reported the use of a drug called Fenofibrate (drug that is normally used to treat liver disease and high cholesterol ) reduced the growth of endometriosis in rats.

This also illustrates a cause that I am very supportive of, using drugs that already exist for the treatment of other diseases as possible novel therapies for endometriosis. This has several advantages, for example if a drug is already being used to treat something else then we know it is safe to use on humans and we know the side effects (angiogenesis inhibitors are something you should definitely not take when pregnant for example). Drugs can often have effects that are unforeseen by their developers, sometimes these effects can be very negative (such as the case of Thalidomide) or sometime they can be positive (such as the case of Thalidomide).

If you would like to read more on angiogenesis inhibitors and endometriosis there is a page on the World Endometriosis Society website about this very subject.

Wednesday, 1 July 2009

It Came From Outer Space

I’ve been going through some of the older papers on endometriosis recently and I’ve come across some rather peculiar reports, particularly this one, this one and this one. It would appear that years ago it was quite in vogue to get animals (monkeys in particular) and expose them to huge amounts of radiation and see what happened. Well the results weren’t that hard to predict, the animals died. However, what was interesting and slightly unexpected is that some of these animals developed endometriosis, apparently as a consequence of being exposed to radiation.

Various types of radiation were used, such as single energy protons, mixed energy protons, x-rays and electrons and the whole point of this seemed to be judging the affect of radiation exposure on women flying into space or in very high orbit around the earth. So the question to be asking really is unless you were one of these unfortunate monkeys how is a woman likely to be exposed to this radiation? Well unless you’re an astronaut or a high altitude pilot chances are you won’t get much exposure as this type of radiation can come from things called solar flares. Solar flares are massive releases of energy at the suns surface which shoot huge amounts of radiation into the solar system.

Now it’s generally thought that earth’s atmosphere protects us from the most harmful effects of this radiation, however some studies have indicated that solar activity can be related to the incidence of heart attacks and autoimmune disease. Therefore it may be that solar activity has some bearing on human health. So could it be that endometriosis is caused by exposure to radiation from outer space? Well I wouldn’t go adhering to any such theory yet. For a start I couldn’t get access to the full versions of the aforementioned papers that link endometriosis to radiation exposure, so it’s hard to judge the quality of their methods and analysis. Without being able to properly critique a study’s methods it’s impossibly to tell whether it’s worth taking it seriously or not. Nevertheless, it may be something that is worth looking into in more detail. Does anyone know where I can get a gamma ray emitter and some monkeys?

Monday, 15 June 2009


There have been a few studies published of late concerning what other conditions endometriosis is associated with.

First up is a study from Brazil which looked at the frequency of celiac disease in women with and without endometriosis. Just to give you a brief overview, celiac disease is a digestive disorder that leads to poor absorption of nutrients through the gut due to damage of the small intestine. Celiac disease can result in people not being able to tolerate things like gluten and presents with a variety of symptoms (For more information on celiac disease follow this link). The study found that 0.66% of women without endometriosis had celiac disease, whereas 2.5% of women with endometriosis had celiac disease. So although the numbers were relatively small women with endometriosis were more likely to have celiac disease. This is interesting because, from my experience, a lot of women with endometriosis also have food allergies or intolerances.

Next is a study from Australia that looked at the frequency of pre-eclampsia in women with endometriosis. Pre-eclampsia is a condition whereby during pregnancy a woman suffers from hypertension. This can be a very serious problem if left untreated for both the mother and child. However, the overall result of this study was that there is no increased chance of suffering from pre-eclampsia if you have endometriosis. In fact there is some evidence to suggest that if you have endometriosis you are less likely to suffer from pre-eclampsia, which is good news, for a change.

Thursday, 4 June 2009

Juneau Biosciences are looking for Women with Endo

If you have diagnostically confirmed endometriosis then there is a study being conducted by Juneau Biosciences that you may be interested in. The main aim of their research is to look for genetic similarities between women with endometriosis to try and find out which women are more likely to develop endometriosis and why. This could, in turn, lead to better diagnostic and therapeutic strategies.
If you think you’d like to participate in this study get onto the website and have a look at the study details. If you do qualify you can expect the following:

You will be contacted by a study coordinator and introduced to the organization conducting this research

They will send you a packet with a questionnaire, medical record release, and saliva sample kit

After completion, you will send these items back to their facilities in the postage-paid envelope provided

If you are interested, they will send you occasional information regarding the progress of their research

Now, they do require access to your medical records and personal information which I know may put a few people off. Therefore, I have personally been in touch with the company and screened them to make sure they’re genuine, however if you have any queries then don’t be afraid to contact them via the contact details on their website, they are very amicable.

Friday, 1 May 2009

How much endometriosis?

When we think of endometriosis, size does not usually factor into our concerns. If you look at and endometriotic implant such as these ones, which are between 1 and 5mm in size, they typically tend to be quite small. In fact some patches of endometriosis are so small they cannot be seen with the naked eye. The only exceptions are endometriomas (or chocolate cysts), which are ovarian cysts of varying size that are caused by endometriosis. Endometriomas can range from being small (like the size of a marble), to being quite large (like the size of a grapefruit). Generally any endometriomas in excess of 5cm requires surgical attention.

Spare a thought then for the woman who is the subject of the following case study published in the Journal Clinical and Experimental Obstetrics and Gynaecology. The report states that a 51 year old, morbidly obese woman was admitted to hospital with anaemia, respiratory problems and kidney failure, so her story doesn’t start well. Further investigation revealed a large mass in her abdomen that had to be surgically removed. Analysis of this mass found it to be an astounding 64Kg (that’s just over 10 stone) of endometrioma.

I’m not sure but I think that’s some sort of record.

Wednesday, 29 April 2009

If Red is your favourite colour are you more likely to have endometriosis?

Firstly I’d just like to point out that the answer to the above question is, quite obviously NO. There has never been any evidence suggesting that colour preference is related to endometriosis susceptibility because the two factors are unrelated. But what if there was a scientific study that said women who have red as their favourite colour are more likely to have endometriosis. Would you change your favourite colour to blue? Or green? I don’t think so, because you know colour preference makes no difference. In a similar sort of vein a study from New Zealand found that people who drive silver cars are 50% less likely to have an accident than those who drive white cars, and people who drive green cars are almost twice as likely to have a serious accident as those who drive white cars. In fact if you’re interested you can read the paper yourself by following the link here. So what should we do? If you own a green car should you rush out to the nearest shop and stock up on silver spray paint? Again the rational answer is, of course, no. The likelihood of having an accident in a car depends on the skills and factors affecting the driver not the colour of the car. The fact that silver car drivers are less likely to have a serious accident is purely coincidental, even if the study that found these associations was well designed and executed.

Okay by now you’re probably wondering where I’m going with this but bare with me. The reason I’ve put in all the preceding text is that a study has just been published in the Scandinavian Journal of Work, Environment and Health which found that women who work as a flight attendant, service station attendant or nurse may be more likely to have endometriosis. Again this is a fairly well designed an executed study, but couldn’t it all just be a coincidence like the car colours?

Well for starters, although this study seems well designed there are definite problems with it, mainly what is known as sample size. Basically if you are going to compare one group of people with another for whatever reason, the more people you have the better as it narrows the likelihood of errors occurring in the proceeding analysis. This study took 341 women with endometriosis and 742 women without endometriosis, which may seem like a lot and would be fine, but these large groups were then divided by job type. So for example, in the service station attendant category they were only comparing 4 women with endo to 2 women without, and in flight attendant category 5 women with endo were compared with only 1 without.

That’s the first problem, the second is the significance of the results. Say you had compared one group of people with another and found a difference between them. How do you know that difference is significant? Well scientists have long boring equations that you put your results into and it pops out with a number called the P value. If the P value is less than 0.05 then the result is significant, if the P value is less than 0.01 then it is really significant. Anything above 0.05 is considered pretty unconvincing. The authors of this study have put their results into these tedious but necessary equations and found that although there was a difference in the number of women with endo in these different job groups they were not significant. The nurse job group, for example, had a P value of 0.23, which is suggestive, but definitely not what is considered significant.

There is also the assumption that job has any bearing on endometriosis risk. Certain authors have said that exposure to certain environmental toxicants may have an effect on developing endometriosis and the level of these toxicants varies with job type. This has never been proven thought, so we must treat this assumption with some caution. For example there was a study that suggested women who work in wood and paper mills may be more likely to develop endometriosis due to exposure to certain chemicals involved in the wood processing industry. However, it must be remembered that no environmental chemical has ever been unequivocally proven to increase the incidence of endometriosis in humans.

In conclusion the study of relationship between job title and endometriosis is an area worthy of investigation but I personally doubt any job type confers an increased risk of developing endometriosis. Endometriosis is such a complicated disease it is far more likely that a whole host of factors play a role in risk of developing the disease. So don’t go changing your job (or your car) just yet.

If you would like to read the full article from the Scandinavian Journal of Work, Environment and Health, follow the download link on this page

Monday, 20 April 2009

Maybe she's born with it

If you suffer from endometriosis you may have pondered on how you came to have the disease. Did you inherit it from a family member? Did the disease arise from something you were exposed to whilst you were still in the womb? Or did exposure to something factors during childhood or adulthood bring on the disease? It’s not just sufferers that are puzzled by this question, scientists also wonder how and why some women get endometriosis and have had a fair go at trying to answer it.

You may have heard about some of the theories going around. Retrograde menstruation is the go-to theory for explaining how endometriosis comes to be. This basically states that during a period although most of the blood exits via the vagina, some of the blood travels upward into the fallopian tubes and out into area surrounding your various reproductive organs. This blood contains endometrial tissue (that normally lines the womb) which is thought to implant on the organs it settles on and grow to become endometriosis. There’s a neat little animation explaining how retrograde menstruation works on the Endometriosis Research Foundation website and can be found here.

The problem with this theory is that it has been found that 90% of women experience retrograde menstruation, so how come only 10% of women get endometriosis? The retrograde menstruation theory also assumes that menstruation is nessacary for endometriosis to develop. Well an interesting study has just been published in the journal of Experimental and Clinical Cancer Research which has presented some new evidence suggesting women are born with endometriosis.

This study took on the task of dissecting 36 human female foetuses, which had either been aborted or died of natural causes, and looked for evidence of displaced endometrial tissue, the hallmark of endometriosis. What they found was that out of the 36 foetuses, 4 showed evidence of endometriosis. This was remarkable for two reasons, one for the fact that endometriosis had apparently been found in developing foetuses, suggesting that women are in fact born with endometriosis, and two because 4 out of 36 individuals with endometriosis is roughly what you would expect to find in an adult female population.

As interesting as this is, the question remains, how does this displaced endometrial tissue get there? Retrograde menstruation clearly cannot be the answer. The authors of this research suggested that there is an error during the foetal development of the reproductive organs. You see when the foetus is in its very early stages of development it is neither male nor female, it has two sets of ducts, the Wolffian duct (which goes on to become the male reproductive organs) and the Müllerian duct (which goes on to become the female reproductive organs). There is a nice diagram of the various ducts and how they develop here.

The body sends signals to these ducts telling them to become the correct part. So if you were a female the Wolffian duct would disappear and your body would send signals to different parts of the Müllerian duct saying “ok this bit becomes an ovary, this bit becomes a uterus, this bit is the endometrium, this bit becomes a vagina etc etc”. The trouble comes when these signals get muddled (possibly environmental toxicants are messing up the signal, or the messages your DNA is sending are wrong) you get the wrong bits growing in the wrong place. This is basically what these researchers are suggesting, that during the body’s early development, the signals are getting mixed for whatever reason and bits of endometrium end up developing where they shouldn’t (this is called ‘Müllerianosis’), then when puberty hits these bits of displaced endometrium that have been lying dormant since birth become active, and the result is endometriosis.

Overall it’s an interesting new theory on the origin of endometriosis to consider however, there will need to be much more investigation along this line before it is widely accepted, but provides the background work for future research. Additionally if this theory becomes accepted then the next question to ask will be “So what’s messing up the signals?” You can read the article in its entirety by following the links on this page.

Sunday, 19 April 2009

Painful Womb Condition

Endometriosis occasionally pops up in the news, which is a good thing, it raises awareness of the disease and promotes the dissemination of knowledge about the field of endometriosis research to a wider audience. However, the sweetness of seeing endometriosis mentioned in a daily rag or news program often has a bitter aftertaste, and this is the tagline the media use to describe endometriosis, yes you know the one “painful womb condition”. There are numerous examples of the “painful womb condition” cropping up in the media, for example in the BBC news pages, brightly lit morning time chuckle fest GMTV and that ever truthful bastion of scientific accuracy The Daily Mail.

It may just be a personal dislike of this particular description but I feel justified in saying that the disease already has a name, why not just call it that? After all you don’t see diabetes reported with the sideline “pancreatic insulin condition” or cancer with a little note saying “deadly cellular proliferation and metastasis condition”. Endometriosis is called endometriosis, that’s it name, we’re not idiots who need a little description in normal people language every time we see a word with more than 3 syllables.

It’s not just the feeling of ‘dumbing-down’ I get every time I see “painful womb condition”, it’s the fact that it’s not a very accurate description. Endometriosis affects the outer surface of the womb, and many other areas. The media outlets even gleefully contradict themselves by stating this. For example, in the GMTV link mentioned above they refer to endometriosis as a “womb condition” then go on to say “Endometrial tissue can also be found in the ovary where it can form cysts and may affect fertility”. This link from the Evening Standard also starts off labelling endometriosis “A painful womb condition” then ends by saying ” The disorder can occur in several places in the body, most commonly the fallopian tubes, ovaries, bladder, the bowel, the intestines, the vagina and the rectum”. It seems like the people writing these articles are having some sort of disagreement with them self about what body part endometriosis affects.

So there are good and bad points about endometriosis being reported in the media. 1) it raises awareness, but 2) It creates confusion by not describing the disease properly. So, in conclusion, if you are a journalist and you must find a suitable tag with which to label endometriosis just call it a “painful condition” or better yet, just call it endometriosis.

Wednesday, 15 April 2009

The Success of Surgery

A surgical procedure is often required for women with endometriosis if drug treatments fail to control the symptoms, but how successful are the different types of surgery? An American study published last year in the Journal Obstetrics and Gynaecology reported the success rates of three different types of surgery:
- Excision of endometriosis alone
- Hysterectomy without removing ovaries
- Hysterectomy with removing ovaries
The study followed patients undergoing these procedures and noted whether they required further surgery after 2, 5 and 7 years. The results were as follows:

Of the women who underwent excision of endometriosis only:
After 2 years 30.6% of women needed further surgery
After 5 years 46.7% needed more surgery
After 7 years 65.4% needed more surgery

Of the women who underwent hysterectomy, but kept their ovaries:
After 2 years 4.3% of women needed further surgery
After 5 years 13.4% needed further surgery
After 7 years 23% needed further surgery

Of the women who underwent hysterectomy and ovary removal:
After 2 years 4% of women needed further surgery
After 5 years 8.3% needed further surgery
After 7 years 8.3% needed further surgery

So it would appear that surgical excision of endometriosis alone is associated with a high rate of recurrent surgical procedures. Hysterectomy with ovary removal was the most successful (but least appealing) procedure. One thing to consider though, is that the abstract for this paper did not state whether the patients participating in this study were taking any medical therapy and whether this affected their recovery rates.

A link to the article can be found here

Have you ever been told pregnancy is a cure for endometriosis?

Chances are if you’re a woman with endometriosis at some point you’ve been told that getting pregnant will cure your endo. Well not only is this an incredibly insensitive thing to suggest to a woman with endometriosis, as women with endo often have problems conceiving, but bringing a child into the world should be a mutual expression of love between a woman and her partner, not a quick fix for a disease. But perhaps the most important fact in all this is that getting pregnant simply isn’t a cure for endometriosis, there is no cure for endometriosis. It’s true that pregnancy may provide a temporary relief from endo symptoms, maybe for a few months, maybe for years, but a permanent cure? Don’t be fooled.

I’m not just voicing opinion here either, I know of several cases where the symptoms of endometriosis have returned after pregnancy. Additionally, a recent article published in the journal Fertility and Sterility reported a study from Japan which found that rates of ovarian endometriosis during pregnancy have actually increased and, in fact, nearly quadrupled.
The facts were these; during the period from 1996-2001 the incidence of ovarian endometriosis was 0.14%, or 5 cases of ovarian endometriosis out of 3558 deliveries. This rose sharply during the period of 2002-2007 to 0.52%, or 19 cases out of 3599.

Now although these incidence rates are fairly low, the mere existence of these statistics indicates quite clearly that the assumption ‘pregnancy cures endometriosis’ is a false one.
A link to the article in question is provided here