One in 10 women in the UK and worldwide suffers from endometriosis. So, why is the condition still so misunderstood?
The Royal College of Nursing describes endometriosis as the presence of endometrial-like tissue outside of the uterus, which induces a chronic, inflammatory reaction.
Some women with endometriosis experience no symptoms at all, but for those who do, the condition can often become debilitating, with symptoms including painful periods, chronic pelvic pain, pain during intercourse, premenstrual symptoms, chronic fatigue, depression, and for some, even infertility.
Women of any age can be affected, and even though endometriosis is the second-most-common gynaecological condition in the UK, it still takes women on average 7.5 years to get diagnosed, from the onset of symptoms, as proven in research conducted by the Royal College Of Nursing.
Intimate health expert Dr Shirin Lakhani says, “Endometriosis is often not recognised by the health system. March was Endometriosis Awareness Month and new statistics have revealed that 62% of women would put off going to the doctor with symptoms of endometriosis and 47% of the female population would be concerned to tell their employer they needed to take time off due to their symptoms.
On average, there are currently 1.5 million UK women living with the condition and yet it takes so long to be diagnosed. It just isn’t acceptable.”
Unfortunately, women are often not taken seriously when presenting with symptoms of endometriosis, told they simply have bad period pain. In other cases, the condition can be mistaken for other health problems, including ovarian cysts, pelvic inflammatory disease and even irritable bowel syndrome. “If you think you may have endometriosis, then it’s a good idea to share your symptoms with a doctor as soon as possible,” says Cheryl Lythgoe, matron at not-for-profit healthcare society Benenden Health.
“On average, it takes seven to eight years for someone to receive a diagnosis for the condition, with 40% of these needing 10 or more GP appointments before being referred to a specialist. Diagnosis can sometimes take a long time because the symptoms can be very similar to those of other conditions, so consider keeping a diary of your symptoms to see if there are any similarities in timing or type. Your doctor will ask about your experience and may be able to recommend a treatment, but they’ll likely refer you to a specialist, because the only way to get an accurate diagnosis is by a laparoscopy. This is an operation where a camera is passed through a small cut in your stomach, so the surgeon can have a look for internal signs of the condition.”
Most importantly, be your own advocate, and speak up about your concerns. The more you write down, the more your doctor will have to go off. And if you don’t feel like you’re being heard, remember it’s always OK to ask for another doctor — it’s their job to make sure you feel looked after and that your concerns are being taken seriously.
Post diagnosis, it’s all about managing your symptoms. Lythgoe says, “While there’s no cure for endometriosis, there are possible treatments, which can help relieve symptoms and improve your quality of life. Possible options include painkillers, hormone medicines and surgery. Deciding on the right treatment for you depends on a few things, such as your age, primary symptoms, whether you want to become pregnant, and your feelings about surgery. If you’re nearing the menopause, then these symptoms may get better on their own without treatment.”
Endometriosis can be an emotional diagnosis to deal with, but the most important thing to remember is that there is help available. As well as sharing any concerns with your practitioner, make sure to share your diagnosis with your friends and family, who can act as a support system when you need it. There are also a number of support groups available for women going through the same diagnosis. You can find details of them at endometriosis-uk.org.