Diet and endometriosis: can avoiding certain foods really help?
Very slowly, but very surely, the conversation surrounding endometriosis is getting louder, at least in the UK. In recent years it has gone from a topic unheard of by most, even by those with the condition, to something which is appearing increasingly regularly in news articles and awareness campaigns. Celebrities such as Whoopi Goldberg have been outspoken about the illness, and Lena Dunham has also shared her experience of endometriosis.
While we should be, and are, celebrating this increased awareness, the more it is spoken about, the more alarming the results seem to be, and the more shocking the truth becomes. Women speak of debilitating pain, being told their only options are to ‘get pregnant now’, having hysterectomies in their 30s, and of taking 10 years to be diagnosed or taken seriously, despite fainting and vomiting from pain regularly.
Little is known about why some women get endometriosis, or ‘endo’, and why some people suffer intense symptoms and why some don’t get any at all. What is known is that in women with endometriosis there are cells outside the womb behaving in the same way as the cells in the womb. In short, this means they build up, as does the womb lining pre-period, shed as a monthly bleed, and are deposited in the body as scar tissue as they have nowhere to go.
The lack of discussion and research has led some women to start finding their own ways to manage their conditions, with some modifying their diet in order to control their symptoms. While the research into diet and its relation to the condition has yet to come to any firm conclusions, many women do believe their symptoms have improved somewhat after changing their diet.
Searching for general dietary advice regarding endometriosis online tends to pull up advice we would associate with healthy eating in any case, although links are made between certain foods and effects they may or may not have on endometriosis. For example, one site recommends eating the recommended 24 grams of fibre a day as it ‘helps the body to naturally expel hormones’ and adds that a healthy liver is good for hormone balance due to its detox function.
This can be helped, the site says, by having an adequate supply of vitamins and minerals. Iron-rich food is also useful, to replace iron lost in the blood through heavy periods. So far, so good, although none of this advice really contains anything different from what we would normally expect healthy eating advice to be.
Interestingly however, the site does recommend limiting gluten, as some people report an ease in their symptoms if they do so. While the link between the two is unknown, it is thought that perhaps bowel symptoms triggered by gluten can heighten the pain experienced from endometriosis. It is also recommended that caffeine and soya are avoided, and red meat, as it is inflammatory. Studies have also shown that those who eat a lot of red meat are more likely to have endometriosis, perhaps because diets high in saturated fat have shown to increase levels of oestrogen in the blood. Ultimately, however, the evidence for dietary factors related to endometriosis hasn’t been substantial enough to prove anything one way or another.
But can really tightening up your diet and avoiding alcohol, gluten, caffeine, or red meat, really make a difference to endometriosis? And are women prepared to make drastic changes to their diets in a bid to relieve their symptoms?
In short, the answer seems to be ‘yes’, at least for the latter question, – and some women report seeing a reduction in their symptoms after making dietary changes. Katie Hogg, a 42-year-old assistant manager, says that changing her diet has made her symptoms more manageable, namely as her pain and bloating is reduced, and her bowel health has improved. Although Katie has had endometriosis since she was a teenager, she wasn’t diagnosed until she was 27. Her symptoms included bloating, leg pain, painful ovulation, pelvic pain, and constipation and diarrhoea. She has had five surgeries, most recently a hysterectomy and bowel repair.
“Diet and lifestyle was never discussed by a doctor,” she says. “After my diagnosis, I carried out research online which led me to a nutritionist’s site which suggested cutting out red meat, dairy, and refined carbohydrates. Instead, it advised concentrating on whole foods, fruit, vegetables and lean protein.” Katie adds that she had become very overweight prior to her diagnosis, and she was now ready to take some control and get her body healthy again.
While it has been a challenge for Katie to try to remain healthy while in near constant pain, and being extremely tired, her main motivation has been the fact that eating a very healthy diet really does improve how she feels. “Over time I have stopped eating gluten as my bowel continues to be problematic,” she says. “Removing gluten improved a lot of my symptoms. I also eat healthy, and I rarely drink because I feel worse when I do.” Katie also started exercising regularly a few years after her diagnosis, and has continued to do so. “As with healthy eating, I often have to hugely motivate myself to do it,” she says. “But I always feel better afterwards, so that is what keeps me going.”
Like Katie, Esther Damary-George, a 27-year-old marketing manager, also found that making changes to her diet helped her symptoms. She has had endo since she was about 15, but was only formally diagnosed when she was 26 – despite the fact her mum had endometriosis and would accompany her on doctors visits asking them to look at her own records. Instead, Esther was diagnosed with a host of other illnesses, from IBS to appendix pains. Suffering from chronic fatigue, pain, periods, and blood in her stools, Esther ended up going private to get a diagnosis — which culminated in a ten hour excision surgery.
Diet was something she found out about online, so she decided to make some lifestyle changes to see if there was any truth behind the idea that endo could be controlled with diet. “I was prepared to try anything,” says Esther. “I also discussed making some changes to my diet with my consultant and he was very supportive of the idea.” Following the advice she had found online, Esther cut out dairy, sugar, and many other foods, but says the things that had the biggest impact for her were wheat and caffeine. Cutting out caffeine meant she was in less pain and seemed to bloat less. Cutting heavy carbohydrates, including whole grains, seemed to help the problems with her bowels that she had been experiencing since her surgery.
“Caffeine was hard to stop,” she says. “I love coffee, but it was one to try and cut, so I did. I found that I was in pain less often and the pain wasn’t sitting as high. Once we got the hang of having no bread in the house, and no coffee, it got easy. We still don’t eat carbs, and I save coffee for special occasions.” Esther adds that gentle exercise also helped her massively, even if it was just walking the dogs. “I found that changing my diet allowed me to understand my body more, not so much manage the symptoms, but just listen to what my body wants and needs,” Esther says. “It also helps with the bloating. I wouldn’t write home about diet, or say it changed my life, but it certainly helped me understand my body, my conditions and symptoms.”
Conversely, for Charlotte, a 28-year-old web designer, cutting out caffeine seemed to have no effect on her symptoms whatever. “Cutting down on caffeine and sugar felt to me to exacerbate my tiredness, nausea and exhaustion,” she says. “I’m sure this isn’t really the case, but when you already feel rubbish, anything that gives you a little bit of joy makes so much difference.”
Charlotte has been experiencing endo symptoms for “about 17 years”, including heavy periods, cramps, pain, bloating, nausea, exhaustion, depression, and anxiety. She took prescription strength painkillers, but it wasn’t until she went to the doctor with painful intercourse that endometriosis was even suggested. Even then, after an ultrasound and an examination Charlotte describes as “traumatic”, she was dismissed entirely. In the end she paid to see a private GP, was referred to a gyno, and instantly diagnosed with endo. She had electrocautery on her visible patches and was fitted with the Mirena coil. She still gets cramps and back pain, bloating, nausea, exhaustion and depression, and was keen to give diet a go in the hope it might help.
“My GP initially mentioned the diet research that had been made when they suggested I may have endo, and said it could be used as a supplement to any medical treatment,” says Clare. “I am always enthusiastic to help myself as much as I can, and they basically suggested that it couldn’t hurt to try.”
As well as caffeine and processed sugar, Clair cut out red meat, dairy and alcohol. Where she struggled to cut something out entirely, she simply cut down as much as she could. However, since then, she has now returned to her normal diet entirely, which involves eating red meat approximately once a week. She has made some lifestyle changes however, which have been helpful to her. “I’ve had to become more honest with people I spend time with — saying no to doing things, to going out, to certain activities,” she says. “The constant pain is so tiring, and I often agree to commitments without considering how exhausted I will be or if I will physically be able to cope with them.”
Aside from lifestyle changes, the only thing that Claire did find that specifically triggered her endo symptoms was red meat. Yet this is a double-edged sword, she adds, because what she really craves when menstruating is red meat. While her dietary changes did mean she lost a bit of weight, she eventually just stopped following it strictly, partly due to the lack of results, and partly because it was just demoralising.
Dr Clare Morrison, a GP at online pharmacy MedExpress, agrees that while lifestyle changes shouldn’t be overlooked, there is no guarantee that they will definitely work for every individual. “What you eat and how much exercise you get can really affect oestrogen-dependent conditions,” she says. “Some studies show a connection between endometriosis and diet high in red meat and low in green vegetables and fresh fruit. In fact, embracing a plant-based diet is believed to be the way to control endometriosis.”
But why is this the case? According to Clare, one theory is that the more fat there is in your diet, the more oestrogen your body produces. “This is also the case if you’re overweight,” she adds. “And you’re more likely to be overweight if you eat too much red meat and too few vegetables and fruit.” Despite this, she does acknowledge that diet will depend largely on the individual and their personal requirements. “While a healthy, plant-based diet will assist some, for others they may see little to no difference. So it’s all about trial and error.”