Alexa Chung has said women are being "dismissed, misdiagnosed and left floundering" before getting tested for endometriosis.
The fashion designer, presenter and model, 39, has opened up about her experience of the condition for the first time in a piece for British Vogue, saying she received treatment for the painful condition while a cyst was being removed.
"The condition is shrouded in mystery and misinformation, and frequently mishandled by doctors. There’s no cure," Chung wrote.
"Often sufferers end up going back for surgery after surgery. Shockingly, there are stories of some doctors suggesting that women have a baby to suppress their symptoms."
Chung spoke to Leah Hazard, author of Womb: The Inside Story of Where We All Began, who said: "When women complain about symptoms you can have with endometriosis, quite often they’re just told to get on with it, or that’s just ‘part of being a woman’, or it’s dismissed as psychosomatic."
That’s why it’s important to be aware of the symptoms and seek medical advice if needed.
What is endomentriosis?
According to the HSE, endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places. For example, the ovaries, the lining of the tummy and fallopian tubes.
It can affect women of any age, although it is less likely in women after menopause. It is also less likely in girls in the early years after their first period.
It is a long-term condition that can impact people on different levels. Some women can continue to lead a normal life. But for others, endometriosis can have a significant impact on their quality of life. There are treatments available that can help.
"Sufferers often work while enduring debilitating symptoms including, pain, bowel and bladder issues, heavy bleeding and brain fog," said Justyna Strzeszynska, founder and CEO of period health app Joii.
How is it diagnosed?
"With the average diagnosis time being over seven years, endometriosis takes its toll mentally and physically," Strzeszynska said.
The first step if you’re experiencing symptoms is to see a GP, who may perform an internal examination, blood test or scan and recommend treatments if they think you have endometriosis.
The HSE recommends that you write down your symptoms before seeing your GP.
Your GP will ask about your history of symptoms and may ask to examine your tummy and vagina. Based on your symptoms and medical history, your GP may recommend you try medication to help with your symptoms.
If these medications help to manage your symptoms, you may not need to have any other tests done.
If they do not help, your GP may refer you to a specialist called a gynaecologist for some further tests. For example, an ultrasound scan or a laparoscopy whereby a surgeon passes a thin tube through a small cut which allows them to see any patches of endometriosis tissue and confirm that you have endometriosis.
What is the treatment for endometriosis?
There is currently no cure for endometriosis and it can be difficult to treat. There are treatments that can help ease and manage the symptoms of endometriosis and slow down the progression of the disease.
Treatments include taking painkillers and anti-inflammatories, contraceptives such as the oral contraceptive pill, and surgery to remove patches of endometriosis tissue, often by keyhole surgery.
"The severity of symptoms associated with the condition is very variable and not always correlating with the clinical stage of the disease," said Francis Gardner, consultant gynaecologist and cancer surgeon at Spire Portsmouth Hospital.
"Initially, many patients continue to function normally with the support of medical treatment for the condition and regular pain relief."
"Unfortunately, if the condition fails to improve with medical treatment then invasive investigation and treatment are required with keyhole surgery and removal of the condition," Gardner added.
"In cases of severe disease, more radical treatment may be required which could involve a hysterectomy, bowel resection or urological surgery such as ureteric reimplantation."
Can lifestyle changes help?
Guidance from the European Society of Human Reproduction and Embryology says ‘no recommendation’ can be made about physical therapies or exercise and their benefit with regards to improving quality of life and reducing pain in women with endometriosis, and that further studies are needed.
But some experts believe it may have a positive impact on some people living with the condition.
Amanda Place, personal trainer and founder of Sculptrition, said: "Exercise can help improve symptoms for some women who have endometriosis, helping them feel better, both mentally and physically.
"Yoga, pilates, or any other type of low to moderate impact workouts, such as swimming, brisk walking and cycling, are typically the best types of exercise to opt for when experiencing endometriosis-related symptoms."
The endorphins produced by movement may help to counteract pelvic pain, but it’s important to start slowly and work out what is best for your body.
"If in doubt, you should ask your GP or another medical professional, such as a gynaecologist or endometriosis nurse specialist," added Farthing.
Particularly if you’ve had surgery: "It’s really important to be careful with physical activity when recovering from surgery, so make sure you get advice from health professionals."
