Associations

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.

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 www.endtoendo.com 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.

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.

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

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.

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.

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