March marks Endometriosis Awareness Month, dedicated to taking action on a disease that has no known cause, nor cure - despite nearly 200 million people suffering with it around the world.
Around 1.5 million women and those assigned female at birth are currently living with the condition in the UK, according to the Endometriosis UK website - around one in 10. But campaigners say that there is still a lot of work to be done when it comes to raising awareness of endometriosis, including improving diagnosis and care.
Steve Irwin's daughter Bindi Irwin recently brought the disease to attention by publicly sharing her diagnosis earlier this week on Instagram. Bindi, 24, explained that she had decided to undergo surgery for endometriosis after spending a decade struggling with "insurmountable fatigue, pain and nausea" due to the condition, with the chronic pain having "torn apart" her life.
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Sharing a photo of herself in a hospital bed, Bindi wrote: "I'm aware of millions of women struggling with a similar story. There’s stigma around this awful disease. I'm sharing my story for anyone who reads this and is quietly dealing with pain and no answers. Let this be your validation that your pain is real and you deserve help."
Bindi received huge praise for her "courage" in helping to raise awareness around endometriosis by sharing her ordeal. Here's what you need to know about the condition, including the most common symptoms, how it's diagnosed and what treatments are available.
What is endometriosis?
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. While it's most commonly found in the pelvic region, including the bladder and bowel, in very rare cases endometriosis can grow anywhere in the body, including on the lungs and brain.
It's not known exactly what causes endometriosis, but it affects approximately 10% of women and girls of reproductive age and those assigned female at birth - that's 190 million people worldwide - and, in exceptionally rare cases, has even been found in men. There is currently no cure for endometriosis, but treatments and medical procedures can help to ease the symptoms.
Endometriosis can lead to several serious health complications, including fertility issues because of the damage the tissue can cause to the ovaries or fallopian tubes, or bladder and bowel problems for the same reason if these organs are affected. Some sufferers can also develop adhesions - "sticky" areas of endometriosis tissue that can fuse organs together - and/or ovarian cysts that are filled with fluid and can be very painful.
What are the symptoms?
The symptoms of endometriosis can vary from person to person - while some sufferers experience debilitating pain on a daily basis, others might not show any signs at all. According to the NHS and the World Health Organisation, some of the most common symptoms of endometriosis are:
- Heavy periods
- Pain in your lower tummy or back (pelvic pain) – usually worse during your period
- Period pain that stops you doing your normal activities
- Pain during or after sex
- Pain when peeing or pooing during your period
- Feeling sick, constipation, diarrhoea or blood in your pee or poo during your period
- Difficulty getting pregnant
- Abdominal bloating
- Fatigue
- Depression or anxiety
How is it diagnosed?
The symptoms of endometriosis are broad and can often mistakenly be dismissed as "normal" period-related issues or a range of other conditions which cause similar problems, meaning that it can unfortunately be difficult for those suffering with it to get a diagnosis.
The World Health Organisation says that there is a "need for more research and awareness raising around the world to ensure effective prevention, early diagnosis, and improved management of the disease", something that campaigners are continuing to call for as they mark Endometriosis Awareness Month this March.
If you suspect that you may have endometriosis, make an appointment to visit your GP in the first instance. They will ask you about your symptoms, and may ask to examine your tummy and vagina, the NHS advises. They may recommend treatments such as going on the pill or taking painkillers as a first course of action.
If initial treatment efforts don't help your symptoms, you will likely need to be referred to a specialist for further tests to confirm whether you have endometriosis, which can involve an ultrasound scan, MRI or laparoscopy - a procedure in which a surgeon passes a thin tube through a small cut in your tummy to check for endometriosis tissue.
How is it treated?
While there is no cure for endometriosis, there are various treatments available depending on where your endometriosis is in your body and how it is affecting your life. According to the NHS, it's important to consider which course of treatment is right for you depending on the risks and benefits of each option, as well as factors such as whether you want to become pregnant in the future, your feelings towards surgery and your main symptoms.
Pain medication like ibuprofen or paracetamol can be used to help combat the pain, but you should tell your doctor if you have been taking painkillers for a few months and found no improvement. Hormone treatment is also commonly recommended as a course of action, such as the oral contraceptive pill, contraceptive injection or contraceptive implant.
In more serious cases, surgery may be recommended to remove the endometriosis tissue - the most common way of doing this is via a laparoscopy, also known as keyhole surgery, in which small cuts are made in your tummy. Alternatively, removal of the womb, also called a hysterectomy, might be considered - although in unlikely cases, the endometriosis can still return after this operation.
You can find more information about endometriosis, including a helpline, support groups and online communities, on the Endometriosis UK website.
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