March is Endometriosis Action Month and the theme this year is: could it be endometriosis?
It’s an important question, because despite the condition affecting one in 10 women and people assigned female at birth, according to Endometriosis UK, it takes an average seven-and-a-half years after first seeing a doctor about symptoms for someone to get a proper diagnosis. Lots of factors play into this – including the fact endometriosis is associated with painful, heavy periods, which people are often taught is just ‘normal’.
“There can be a misconception that periods are meant to be painful, and they are heavy and can have this huge impact on your day-to-day life,” says Dr Stephanie Ooi, a GP working with Active Iron. “Whereas really, I would say those things are definitely a sign to go and see your GP.”
Endometriosis occurs when cells similar to the ones in the uterus lining grow outside the uterus. These lesions bleed (like what happens within the uterus during a period), but because the blood can’t escape, it can cause inflammation and scar tissue (adhesions) to form, as well as cysts.
In severe cases, this process can be widespread, affecting other organs and tissues throughout the body. As Dearbhail Ormond, founder & CEO of frendo, an app that supports people affected by endometriosis or awaiting diagnosis (and who also lives with severe endometriosis herself), puts it: “Endometriosis is a whole-body, chronic, inflammatory disease.”
Infertility is also associated with the condition, and lots of people with endometriosis also have adenomyosis – where the endometrial tissue grows inside the uterus wall.
Unsure whether your period pain could be endometriosis? Here’s a closer look…
Periods that interfere with your life
So, what counts as a heavy and abnormally painful period?
Dr Ooi says: “If you’re on maximum-absorbency tampons, pads or a cup and you’re changing those every hour or so, and passing clots larger than a 10p piece quite regularly. And pain wise, if you’re getting to the point where you’re having to take regular painkillers and finding the pain quite debilitating and it’s having an impact on your day-to-day activity – for example, you’re not going for social activities, not going to the gym when you normally would, you’re having to centre your life around symptoms.”
Ormond points out that in a survey by frendo of 2,000 UK women, 63% of endometriosis sufferers “were told they were lying about their symptoms”.
She adds: “Extremely painful periods are not normal, and not ok. Periods that interrupt work, school or your day-to-day activities are not normal. Women have historically been conditioned to accept a certain level of discomfort and pain when it comes to periods. My own endometriosis stage 4 diagnosis took 18 years to diagnose, with visits to more than 20 doctors, years of pain and feeling dismissed with many misdiagnoses along the way.”
Intense fatigue
Ormond says: “The fatigue experienced by many endo sufferers is way more intense than regular tiredness. More often than not, it’s a long-term feeling of exhaustion that affects sufferers both mentally and physically and can have a profound impact on people’s work and personal lives.”
Inflammation plays a part here. As Ormond explains: “The body recognises the [endo] lesions are not normal and works extremely hard to eliminate them” – a process which releases toxins. “These internal toxins are the main cause of fatigue for people with endo. In addition, living with chronic pain is another drain on the system, adding to the fatigue for many.”
Another factor is low iron. “Because you’re losing more blood essentially, your iron levels are getting depleted, so a lot of people also experience what’s called ‘menstrual fatigue’,” explains Dr Ooi. “Active Iron conducted a survey of 1,500 women, which showed that can have a huge impact.”
Some 74% of the women surveyed with endometriosis said they’re affected by fatigue, while 84% reported a noticeable difference in their ability to function normally during their period.
Painful bowel movements and gut issues
If endometriosis affects the bowel and rectum, going to the toilet can become excruciatingly painful. “This can often be a sign that endometriosis is growing into the bowel wall or surrounding tissue. As well as painful bowel movements, other signs can be constipation during menstruation, or pain during sex,” says Mr Amer Raza, consultant gynaecologist at Cromwell Hospital, which has an International Centre for Endometriosis.
“When endometriosis spreads to the intestines, it presents many of the same symptoms as IBS and Crohn’s disease,” Raza adds – including constipation, diarrhoea and nausea.
Severe bloating
Many people with endometriosis experience ‘endo belly’ – “the term used to describe the uncomfortable, often painful, swelling and bloating linked with endometriosis,” says Raza. “It is rarely discussed but can be a distressing symptom.
“Bloating and fluid retention are common, and can be caused by a build-up of endometrial tissue which causes inflammation in the abdomen, trapped blood which can form cysts, or small intestinal bacterial overgrowth.”
It’s often associated with other symptoms too, including gas pain, nausea, constipation and diarrhoea, Raza adds, and can “cause the lower abdomen to swell for days or even weeks”.
Leg pain
“Endometriosis can cause leg symptoms such as numbness, throbbing, tingling, heaviness or pain when walking or exercising. It will feel different to muscle cramps or soreness and may become worse during a period,” says Raza. “There isn’t enough research into why endometriosis causes leg pain, but it’s believed it could be linked to endometrial-like tissue becoming trapped near the nerves, or endometriosis growing near the sciatic nerves.”
Bladder symptoms
Raza says it’s rare for endometriosis to affect the bladder, but it can happen. “Symptoms for bladder endometriosis can include bladder irritation, bladder urgency, pain when the bladder is full, blood in the urine during a period, or pain in the kidneys,” he adds.
Get things checked out
Endometriosis can vary and not everybody is affected in the same way. It’s also important to remember the above symptoms can all be caused by other things too. If you are concerned, see your GP and get things checked.
