Day 12: Myths about Endometriosis

1) It's a sexually transmitted disease.

Let's set things straight here - endometriosis is NOT a sexually transmitted disease. This is an opinion I have come across a few times when talking to people about my condition. It is completely and utterly untrue and is a hurtful and embarassing assumption to make about a disease that strikes through no fault of the patient. I have also had people comment saying that it is caused by stress. While stress may exacerbate it, it is not the cause.

At the moment the exact cause of endometriosis is not clear. Genetics definitely play a part - you are much more likely to have endometriosis if your mother, sister or other family member has it. Autoimmune disorders have also been linked. Researchers in Queensland have recently discovered certain variants of DNA that are more common in patients with endometriosis than everyone else. I'm looking forward to seeing what else they have to say.

2) It can be cured.

Currently there is no known cure for endometriosis. Many things have been shown to make it better on a case-by-case basis, but no one cure works for everyone. Things that can improve endometriosis dramatically include pregnancy, artificially suppressing oestrogen through hormonal treatments (eg the implant, IUDs or the pill) and surgery. However, if you've been reading this blog, you will know that these do not always make it all go away (I am currently using the last two as treatments).

3) It's all in your head.

Many people struggle with understanding endometriosis (and other chronic conditions) because they can't see it. They think that because the person looks healthy, they must be healthy. Not true. In my case, if you looked at my insides, you could see that I definitely do not look healthy. In other cases, such as fibromyalgia or depression, you can't see anything at all. This doesn't mean that these conditions should be taken less seriously. Often this "invisible" illness factor makes it more difficult to deal with having endometriosis since you not only have to deal with the symptoms, but also the perceptions of you by your doctor, workmates, family & friends.

4) It can be ruled out by ultrasound.

I had three pelvic ultrasounds before I had surgery, and not a single one of them showed any endometriosis. The first doctor that requested one for me took that as a sign that I had nothing wrong with me. Well, turns out I have stage III endometriosis. So, that's obviously not true. Occasionally you can see endometriosis in ultrasound, but more often than not, you can't. The only way you can confirm or rule out endometriosis is through laparoscopy (keyhole surgery).

5) It's just period pain.

Period pain is not the only symptom of endometriosis. Other symptoms of endometriosis include persistent fatigue, irregular or heavy periods, pain with sex, pain with urination and irregular bowel movements (constipation/diarrhoea). Infertility can be a complication of the disease in some cases.

Also, the stage of endometriosis that is diagnosed does not necessarily reflect on the amount and severity of pain. Some women can have endometriosis everywhere (stage 4) and have little pain and other symptoms, while other women can have little endometriosis (stage 1) and are in constant pain. Some women who have endometriosis have no symptoms at all. 

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is: Call BS on something. What’s something that is just ridiculous?