1.
Pregnancy is not a cure for endometriosis. Being pregnant may provide temporary relief from symptoms but it does not cure the condition. So ignore people who tell you different.
2.
You do not have this because you decided not to breed in your early 20s. Delaying pregnancy is not a cause of endometriosis.
3.
Hysterectomy is not a definitive cure for endometriosis. So get a second opinion if someone tells you that.
4.
What is true is that endometriosis is a condition in which tissue similar to the lining of the uterus (the endometrium) is found outside the uterus, most commonly in the pelvic cavity.
5.
Endometriosis is hard to diagnose. The only definitive way to know is via laparoscopy by a skilled specialist who knows what to look for. Because it is hard to diagnose, and also because of a general lack of knowledge, there is often a long delay between a woman going to a doctor about her symptoms and being diagnosed – eight and a half years is the average but it can take up to 12 years. Don’t waste your time with doctors who don’t know about endometriosis, find a specialist now!
6.
Endometriosis is not just about painful periods and infertility. Other symptoms include painful ovulation, pain during or after sex, abnormal bleeding, chronic pelvic pain and fatigue.
7.
Having endometriosis does not mean you are infertile. Between 30% and 40% of women with endometriosis may not be able to have children but many women with endometriosis become pregnant naturally or with reproductive assistance.
8.
The financial cost to the world of endometriosis is similar to that of diabetes. It’s estimated to be about US$10,762 per woman per year. Two-thirds of that cost is due to lost work productivity and the remaining US$3,497 is in direct healthcare costs.
9.
There is no cure for endometriosis. It’s not a rare disease. It affects 10% of reproductive-aged women. That’s 176 million women worldwide.
10.
Nobody knows what causes endometriosis but it’s likely genetics plays a role. If your mother or sister has endometriosis, there’s a higher chance you’ll have it too.
11.
Endometriosis affects the immune system but it isn’t an autoimmune disease.
12.
The severity of endometriosis doesn’t necessarily correlate with the amount of pain or other symptoms a women has.
13.
Endometriosis affects every woman differently. That means that there’s no one treatment that will work for everyone. You should discuss your full range of symptoms and treatment options with your doctor. If you’re not being given clear options that explain how the treatment offered will treat your symptoms, find another doctor.
14.
There are three main treatments for endometriosis: surgery, hormones and pain management. You can find out more about them at endometriosis.org.
15.
Not all endometriosis surgery is created equal. If you’re having surgery, laparoscopic excision is the best treatment. But it should only be performed by surgeons with experience in the technique and with a good knowledge of the disease.
16.
If you want to have children in the future, always discuss fertility with your doctor before surgery. In some cases, surgery can help women with endometriosis become pregnant naturally. But be warned: surgery on your ovaries could also impair their function, which might make it harder to get pregnant.
17.
Endometriosis needs oestrogen to grow. Hormonal treatments that slow down or stop the production of oestrogen are therefore commonly used to treat it. These include the oral contraceptive pill, progestins, GnRH-analogues and the MirenaIUD.
Photograph: Cultura RM/Alamy
18.
Pain can become part of everyday life for women with endo. But taking over-the-counter or prescription analgesics too often can actually make your pain worse in the long run. If chronic pain is part of your life, you should find a pain clinic or pain psychologist or discuss options with your primary health carer.
19.
The couch is not your friend. Exercise is often difficult for people suffering from chronic pain but endometriosis gets worse when you don’t move. You don’t have to go to the gym or run a marathon; walking or swimming may be sufficient.
20.
Forget about your core! If you have chronic pelvic pain, your pelvic floor could be overactive rather than weak. This means exercises including Pilates, planking or personal training may not be right for you. If you can, find a pelvic physiotherapist to get some advice.