Endometriosis is more common than you might think, affecting 1 in 10 women – and often leads to pain and infertility.
And despite the buzz surrounding actor/director Lena Dunham’s recent hysterectomy for endometriosis at age 31, the condition can’t be cured or prevented. (Treatment is available to reduce the severity of the symptoms.)
Hysterectomy – removing reproductive organs such as the uterus and fallopian tubes – is usually a last resort for women living with ‘endo’, after less invasive surgical and medical treatments have been tried, says Dr Janine Manwaring, a gynaecologist and spokesperson for Jean Hailes for Women’s Health.
What is endometriosis?
Endometriosis occurs when the tissue that usually lines the uterus (womb) grows outside of it and in other parts of the abdomen and pelvis, such as the bowel and bladder. But it can grow in almost any part of the body. Even though this tissue (called the endometrium) is outside the womb, it still responds to messages from the ovaries. It grows, and during a menstrual period, it bleeds.
The key problems caused by endometriosis are pain and difficulty becoming pregnant, although you can have endo and not experience either of these things. Endometriosis is only properly diagnosed through a surgical procedure called laparoscopy, and since symptoms vary a lot, it can take up to 10 years to diagnose in some women.
Signs and symptoms of endometriosis may include:
- pain on or around your period or ovulation
- pain during or after sex
- pain during bowel movements or when urinating
- pain in the pelvic region, lower back or legs
- heavy bleeding or irregular bleeding
- difficulty holding on when you have a full bladder, or having to urinate frequently
- fatigue
While it can’t be cured, treatment of endometriosis can include: pain relief medications, hormonal treatments such as the oral contraceptive pill, the IUD ‘Mirena’, artificial progesterone, and surgery involving laparoscopy. This last procedure allows your surgeon to both diagnose endometriosis and potentially cut out or burn off the rogue endometrium.
Hysterectomy is not for everyone
While Lena Dunham’s story might help raise awareness of endometriosis and encourage sufferers to push for further medical assessment, says Dr Manwaring, it may also lead to distress for some women.
“Lena’s dramatic experience is at the more extreme end for most women with endometriosis, and it may cause some fear or despair in women with endometriosis – that this is going to be their fate too,” she explains. “Hysterectomy is usually saved as a last procedure, after less invasive surgical and medical treatments are tried. It may also lead to medical practitioners informing women that their only way of symptom management is hysterectomy, which is not true for the majority of women.”
In this case, Ms Dunham had her uterus removed but not her ovaries. Since ovaries cause the endometrium to grow outside the uterus, on other organs and throughout the pelvic area, a hysterectomy isn’t guaranteed to alleviate her symptoms anyway.
“If endometriosis is affecting organs away from the uterus, or is causing pain within adjacent nerves or muscles, simply removing the uterus may not reduce the pelvic pain, even though periods have been ceased,” says Dr Manwaring.
Women also need to decide whether they’re prepared to give up the chance to have children, or more children, after a hysterectomy. “There is the potential for regret, which tends to be higher if the woman is younger,” says Dr Manwaring. During recovery, which can last up to 6 weeks, some women can experience grief tied up with feelings of “lost femininity and fertility,” she adds.
Show your support and 'March into Yellow'
This month you’re invited to ‘March into Yellow’, helping to spread awareness of endo and raise funds for Endometriosis Australia. Build a supporter page at Everyday Hero and wear yellow throughout March, or just on Friday March 9. Or, simply start a conversation with friends and colleagues about endometriosis. Find out more here.
Where to seek help
If you are living with endometriosis or suspect you have it, talk to your doctor. You can also use the healthdirect Symptom Checker to help you decide what to do next.
If you want more information about this incredibly common condition, you can visit:
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