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.