There’s an awful lot of bad information on endometriosis out there.
I’ve talked previously about how endometriosis is often dismissed as bad period pain that is completely normal. It’s probably the most pervasive myth about endometriosis, but there are a heap more, and I want to discuss them all below.
- It’s normal/all women get it. As I said, hands down the biggest myth about endometriosis is that it is in any way normal. Firstly, not all women suffer period pain. My mother never has (why couldn’t I get her genes?) Other women may get no more than some slight discomfort and cramps. That, I am told, is quite normal. However, pain that means you can’t stand upright, makes you vomit, makes you faint, or is so serious that it effects your ability to do your normal activities, is not normal.
- Endometriosis can be cured by pregnancy. Wrong! Whilst pregnancy can get rid of endometriosis symptoms in some women, in others the pain will come back exactly as it was before as soon as the mother finishes breast-feeding. In others, it will come back far worse. Most women do experience relief during pregnancy due to the rush of hormones (mainly progesterone) that help combat endometriosis. That is not the same thing as a cure. Frankly, I think it is irresponsible of doctors to suggest that it is, particularly when it leaves you with a child as the outcome. I’ve been being told since I was 15 that pregnancy might help a variety of different things, and it’s not very often that doctors have acknowledged that it may also make it worse.
- Endometriosis can be cured by a hysterectomy. If it could, I would have had one by now. A hysterectomy is the total or partial removal of the reproductive organs, including some or all of the uterus, Fallopian tubes and ovaries. Problem is, endo growth is not limited to those areas. Even if it was limited to there prior to the hysterectomy, it may well reappear afterwards on new and exciting organs like the bladder, bowel, liver, kidneys, stomach or even lungs.
- Endometriosis can be cured by diet. If one more person tells me this I may just get violent. Diet can be very helpful for some people in managing some symptoms (more on this in future). But if it was as easy as diet, we would not be complaining. There is literally no cure for endometriosis. It’s a chronic disease. You have it forever. The same goes for similarly ridiculous advice about yoga, or sticking jade eggs in your crotch, or whatever else people might come up with.
- You can’t have endometriosis in your teens. This has been thoroughly debunked, but has been a myth that has contributed to the delay in diagnosis for many women who start to show symptoms in their teens.
- Endometriosis is caused by abortion/douching/wearing tampons/having sex. No to all of these. No one knows yet what causes endometriosis, although there are some indications that genetics are a factor. None of the above are linked to endometriosis in any way, and there are plenty of women who will be diagnosed with it without having done any of the above.
- More extensive endometriosis = more pain. When I was originally diagnosed, I was told I had stage II endo (the stage number refers to the spread of the endo in your body). I had significant pain. I’ve since met a lady with stage IV who had almost no pain at all. You can have heaps of endo with no pain, and very little endo with agonising pain.
- It worked for her, so it will work for you. There is no one-size-fits-all to treating endometriosis. I’ve had great success with drugs that have been terrible for others, and vice versa. Surgery was awful for me but has given enormous relief to other women.
- Endometriosis means you can’t have children. Yes, endometriosis can impact fertility, sometimes making it totally impossible to have children. However, plenty of affected women do manage to conceive and bear to term. Endometriosis is a very individual disease and effects everyone in different ways. If you want children, don’t stress yet; it may not be completely off the table.
- If I do X, Y or Z I won’t get endometriosis. If this were true, I would spend each day yelling from the rooftops, “Do not do that!” at passers-by. Nothing you do can cause or prevent endo. You either have it or you don’t. Sorry. 😦
What are the stupidest things people have said to you about endometriosis? Did you believe any of these things when you were first diagnosed?