by Matthew Rosser** (follow his blog here)

If you live with endometriosis, chances are you’ve gotten plenty of advice from people and not all of it was helpful. Some people, despite having good intentions, tend to have opinions even though they don’t know what they’re talking about (this extends to certain members of the medical profession). 

If you are a woman with endo, 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. With that in mind & a fair deal of inspiration from reading too much and a thread on the Endometriosis Research Center’s Facebook page I present, in order of increasing capacity to irritate:

10) You can only get it in your pelvis.

While it may be true that endometriosis is most commonly found around the uterus & ovaries, it is by no means exclusive to these areas. Extra-pelvic endometriosis is very real, and in some cases, a very serious problem.

9) You can’t have endo 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 a prerequisite for having endometriosis & removing the uterus is not a cure.  Recurrence of endometriosis is dependent on the type of post-surgical medical therapy used. If the ovaries are removed then chances are you’ll have to take hormone replacement, which carries an inherent risk of increasing recurrence of the disease. It is imperative that post-surgical medical therapy is carefully managed.

8) You don’t need to be diagnosed. You can just take drugs to manage symptoms.

Let’s say you’re driving along one day when all of a sudden your car breaks down. You pull over & call a mechanic. The mechanic turns up, doesn’t open the hood, but says “Yeah, it’s probably the spark plugs.” He changes 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 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. 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.

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?

The undiagnosed treatment may help relieve your symptoms but it doesn’t tell you what’s wrong. 

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 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 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.

** We still suggest organic, toxicant-free feminine products. Even if dioxin isn’t detectable, there are countless other chemicals found in conventional feminine products that aren’t good for a body, regardless of endometriosis.

6) It’s caused by an infection, like an STD, 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 things so please feel free to correct anyone who confuses the two.

5) Only career women who delay childbearing get it. 

Yes, adult women between the ages of 21-35 are more likely to be diagnosed with endometriosis (note that I emphasized 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.

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.

4) Endometriosis can be caused by psychological trauma early in life.

Easily, this is the one that riles me more than any other stupid thing said about endometriosis.

This attitude 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 fetuses? 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?

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.’

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. 

2) It’s just bad period pain.

I’m not a very good cook. I can just about manage to make cheese on toast without a trip to the Burn Unit.

Therefore, with my limited knowledge on cooking, I don’t walk into restaurants and stand next to the chef saying things like “You over seasoned that” 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 talking on that subject.

It is very much the same thing whenever you hear someone say “Endometriosis is only bad period pain.”

Endometriosis is so much more than period pain. A great deal of women with endometriosis experience tremendous pain before, during and after their periods.

With endometriosis there also 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 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.

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. Also, many women with endometriosis suffer with 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.

This 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. Educating yourself & others about endometriosis is an empowering endeavor and a necessity.

The more you know, the stronger you are. Read the evidence, uncover the truth, ignore the bullshit.

**this is a truncated version of the list originally posted on Matthew Rosser’s blog here & also Nancy Petersen’s LinkedIn blog which you can read here.

What’s your favorite B.S. myth? Let us know by commenting on our FB page here.