Women are opening up about 'endo belly' – but what actually is it?
When it comes to understanding endometriosis, a condition that only impacts women and those assigned female at birth, it feels like the conversation is only just getting started – and that includes raising awareness of various signs and symptoms of the disease. One of which, amongst painful periods, fatigue and toilet issues, is extreme bloating: something those living with endometriosis have dubbed 'endo belly' (you might have spotted a video on it on your FYP).
But what is endo belly, and most importantly how do you treat endometriosis-related bloating? Zoe Lapwood, a registered gynaecological nurse and a support line advisor at Endometriosis UK, is here to answer those questions and more...
What is endo belly?
In a nutshell, endo belly is a colloquial term that many in the endometriosis community use when talking about bloating, says Lapwood. "Although of course people might experience bloating for other reasons than endometriosis. It is often described as being uncomfortable or painful, and some people will describe their 'endo belly' as looking like a pregnant tummy. It can feel hard and tight when touched. It may occur alongside other gastrointestinal symptoms like constipation, diarrhoea and nausea."
She adds that "as those with endometriosis will know, all symptoms of endometriosis are complex and can vary from person to person, as is the case with 'endo belly'."
What is the cause of endo belly?
Like with many issues around endometriosis, Lapwood explains, sadly there isn't enough research into this topic (the gender health gap is real) – but she caveats that there's also likely several causes of this symptom.
"Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body," Lapwood notes. "These cells can grow and change in response to hormones during the menstrual cycles, which can cause inflammation, and other symptoms.
"This inflammation may lead to the severe bloating known as 'endo belly'. If endometriosis tissue is within the digestive system, this may make severe bloating more likely, as well as other symptoms like constipation and excess gas."
Interestingly, the expert also says that there's some evidence showing those with endometriosis experience changes to what is called the gut microbiome. "That is, the range of bacteria naturally present in everyone's gut - which may contribute to bloating."
How can you treat endo belly?
When it comes to 'treating' endo belly, the only way to do that is to tackle your endo as a whole, says Lapwood. "But we know that it can be really tricky to get that treatment. You can find more information on Endometriosis UK's page on treatment options."
As for how to find relief, the nurse suggests trying heat pads but being mindful to avoid burning. Tracking your food to spot for any associated triggers can also be helpful, she says, reminding that again what might be a trigger for one person might be absolutely fine for another – endometriosis manifests in so many ways.
"Changes to diet can help ease some symptoms of endometriosis. While there is no one single diet that is recommended if you have 'endo belly', maintaining a healthy gut microbiome is important in reducing inflammation," says Lapwood, adding that focussing on eating enough plant-based fibre (shout out to fruits and vegetables) is a great place to start. "[Also] include fermented foods such as kimchi, kefir or kombucha to 'feed' the good bacterial and minimising ultra-processed foods.
"You may have heard people talk about getting relief from using the FODMAP diet, we recommend that you speak to a dietitian before considering this diet, as it’s only recommended as a short-term measure. A diet rich in fibre can relieve and prevent the constipation that may accompany 'endo belly'."
And it's not just food it helps to be mindful of either, keeping on top of your water intake may also help. "The NHS advises that you aim to drink enough water during the day so your urine is a clear, pale yellow colour," Lapwood shares, signposting to a webinar on endo and nutrition here.
Is endo belly anything to worry about? What can you do if you’re concerned?
"Most of us – with or without endometriosis - will bloat from time to time, but it’s important that we do not normalise the severe bloating which is seen in those experiencing ‘endo belly’," says Lapwood. "If you have extreme bloating that is frequent and persistent it’s important to speak with a doctor, to assess the root cause."
It's worth ruling out whether or not your endo belly is definitely linked to endometriosis too, she adds. "While 'endo belly' is widely reported among those suffering from endometriosis, there can be other causes for extreme bloating which include food intolerances or an infection.
"In a small number of cases persistent bloating, meaning that it doesn’t come and go, is a symptom of ovarian cancer, although it is worth noting that this is a very uncommon cancer, with only 7,500 diagnoses each year in the UK."
Lapwood again reminds that noting any bloating, along with other factors that could've influenced it (such as food, drink, stress), is helpful – and that you can take that with you when chatting to a GP or other healthcare professional.
This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
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