Today, The Lake Foundation formally published the findings from its fibroids survey.

Our fibroids survey was launched last summer and we invited women with experience of fibroids to take part. The aim of the survey was to understand the needs of women with fibroids to inform the development of our fibroids information and support programme.

We explored five main areas and our key findings are as follows:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis.
• There was a good level of awareness of some of the main symptoms of fibroids but a low level of awareness of other symptoms.
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors.

Route to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms.
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated that it took 12 months or more to receive a confirmed diagnosis.

Treatment

• Despite the fact that 79% of participants had a discussion with their GP about treatment options, 63% stated that they didn’t feel that they had enough information to make an informed decision about their treatment.
• The majority of participants (42%) had surgery to treat their fibroids.
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally.
• Many participants did not feel like they had enough support to assist them in managing or overcoming the emotional, physical and medical impact of fibroids.

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support.

In 2015 we will work towards addressing these issues and have started this with our Fibroids Ask The Expert which was launched at the end of last year.

For more information on the findings of our survey please download our report below.

We get a lot of questions from women about what they can do to prevent fibroids. This week’s blog post follows our recent post on exercise and fibroids prevention. Today, we’ll look at diet.

Fibroids are non-cancerous tumours that develop in or around a woman’s womb. They can cause a number of symptoms including pelvic (tummy) pain, infertility, heavy and/or painful periods, back pain, anaemia, constipation, frequent urination and pain during sexual intercourse.

The exact cause of fibroids is unknown but research does suggest that they are caused by a combination of genetic, lifestyle and hormonal factors.  Those most at risk of developing fibroids are: black women, those who are overweight, women of child bearing age (particularly women who are 25-45 years old), those with a family history  and women who haven’t given birth.

Diet and Risk Reduction

When trying to understand what we can do to reduce our risk of developing fibroids diet is an interesting and important factor.  As obesity is a major risk factor then logically if we adopt a healthy lifestyle and lose weight then we can reduce our risk of developing this condition. But, are there particular foods that contribute to fibroids development and are there foods that are protective? Let’s take a look at what the research tells us about this.

Red Meat 

When it comes to foods that increase risk of developing fibroids, research suggests that red meat plays a major role. One research  study has shown that frequent consumption of beef and other red meat increases a woman’s risk of developing fibroids by 70%. This finding is similar to a study conducted in India which found that women who consume red meat are three times more likely to develop fibroids compared to vegetarian women or women who are mostly fish eaters.  This is in stark contrast to a recent  study that found no association between meat consumption and fibroids, although in this study researchers looked at all meat and didn’t look specifically at red meat.

Fruit and Vegetables 

The Black Women’s Health Study conducted in the US explored the impact of fruits and vegetables on a woman’s risk of developing fibroids. In this study, 22,583 black women were monitored from 1997 to 2009 and their food intake monitored.

This study found that overall fruit and vegetable intake was associated with a reduction in risk and the strongest reduction in risk was associated with a high intake of citrus fruit.  Additionally, they found that vitamin A from animal products (liver and dairy) was linked to  a reduction in risk too.

These findings were similar to that of a small Chinese study which explored the association of fibroids with diet, physical activity and stress.   This study took place between 2009 and 2011 and researchers found that fruits and vegetables significantly reduced risk of developing fibroids with women consuming the most fruits and vegetables (eating fruit and vegetables more than three days a week) being 60% less likely to develop fibroids.

Finally, a study conducted in 2009 found that a high intake of green vegetables  reduced the risk of developing fibroids by 50%  and fruit consumption reduced risk by 20%.

Vitamin D 

In 2013, one of the first studies looking at whether vitamin D is linked to fibroids was conducted and this study found that women with sufficient levels of vitamin D were 32% less likely to develop fibroids than women who are vitamin D deficient. Furthermore, another study published in 2013 found that women with fibroids had significantly lower levels of vitamin D compared to women not affected.  These studies suggest that vitamin D is protective.

Conclusions

It is clear that diet is very important in the development of fibroids. By adopting a healthy diet we can reduce our risk and women should pay attention to their fruit and vegetable consumption, reducing their red meat intake and making sure they have enough vitamin D.

It’s important to note that surveys conducted in the US have found that African Americans consume less fruits and vegetables than their white counterparts, it is important that we change our lifestyles and work on increasing our fruit and vegetable intake, our health depends on it.

Fibroids are benign tumours that develop from the smooth muscle cells of the womb. They are the most common tumour amongst women with an estimated 30 – 40% of women between the ages of 25-45 expected to develop them.

Research has shown that fibroids are more common in black women with an estimated 55-80% of  black women affected . In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger and multiple fibroids, and tend to develop more severe symptoms.  The reason for this is unknown but it is thought to be a combination of genetic, environmental and lifestyle factors.

Through our interactions with black women we have anecdotally found that whilst fibroids are very common there seems to be a lack of information and support for women who are affected.  To explore this issue further we conducted a survey that aimed to explore the needs of women with fibroids, determine if there is a need to develop information and support and if so,  the survey aimed to inform our development of a fibroids information and support programme.

The survey explored four areas:

• The level of knowledge of fibroids prior to diagnosis
• Treatment and diagnosis
• The effect of fibroids and its treatment on quality of life
• The availability of support and information

The key findings from  our survey were:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis
• There was a good level of awareness of some of the main symptoms of fibroids but a low level of awareness of other symptoms
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors

Pathway to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated it took 12 months or more to receive a confirmed diagnosis

Treatment

• Despite 79% of participants having a discussion with their GP about treatment, 63% stated they didn’t feel they had enough information to make an informed decision about their treatment
• The majority of participants (42%) had surgery to treat their fibroids
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally
• Many participants did not feel they had enough support  to assist them in managing or overcoming the  emotional, physical  and medical impact of fibroids

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support

Conclusions from the Survey and Next Steps

The survey suggests that a significant number of women with fibroids do not have access to the support and information that they require. The Lake Foundation will focus its efforts on addressingthe gaps in the availability of information and support by developing a relevant support system for women, particularly black women, with fibroids.

We have started this process with the launch of our ‘Fibroids Ask the Expert’ in October. This resource provides women with the opportunity to obtain accurate reliable information from experts in the field. In 2015 we will begin to develop a range of publications and explore a support programme for women with fibroids.

We get a lot of questions from women about what they can do prevent fibroids. In this week’s blog we’ll look at the effect of exercise on the development fibroids.

Fibroids are non-cancerous tumours that develop in or around a woman’s womb. They can cause a number of symptoms including pelvic (tummy) pain, infertility, heavy and/or painful periods, back pain, anaemia, constipation, frequent urination and pain during sexual intercourse.

The exact cause of fibroids is unknown but research does suggest that fibroids are caused by a combination of genetic, lifestyle and hormonal factors. Those most at risk of developing fibroids are: black women, those who are overweight, women of child bearing age (particularly women who are 25-45 years old), those with a family history of fibroids and women who haven’t given birth.

Exercise and Risk Reduction

When looking at these factors and trying to understand what preventative steps women can take, exercise seems like a logical factor to explore for two main reasons. Firstly, being overweight increases risk of developing fibroids so a woman can reduce her risk by maintaining a healthy weight through exercise. Secondly, fibroids are a hormonal condition with oestrogen and progesterone playing a role in their development. When we look at similar hormonal conditions that have been widely studied, such as breast and endometrial cancer, exercise has been shown to be beneficial in reducing risk. This is thought to be because exercise has a number of effects on our hormones which ultimately can lead to a reduction in the level of hormones circulating in our body and a  balancing of our hormones.

What Research Tells Us

A recent small study published in 2013 by Peking University in China looked into the association between physical activity and fibroids. They found that women who participated in moderately intense occupational activity (physical activity at work) had a significantly lower risk of developing fibroids.

In 2006, The National Institute of Environmental Sciences in Washington DC published the results of their research study exploring the effect of exercise on the development of fibroids. This study included 1189 women (734 black women, 455 Whites) aged 35-49. Whilst their study did have some limitations they found that women who did the most physical activity (more than 7 hours a week) were significantly less likely to develop fibroids than those who did the least amount of exercise (less than 2 hours a week). They also found that the association between exercise and fibroids was similar for both black and white women.

Finally, in 1986, the Harvard School of Public Health published their study which compared the prevalence of fibroids in former college athletes (2,622 women) to non-athletes (2,776 women). They found that the non-athletes were at a 40% greater risk of developing fibroids than their athletic counterparts.

Conclusion

Research and theory demonstrate that regular exercise is an effective way to reduce your risk of developing fibroids. By introducing as much exercise as you can into your weekly routine you can make a significant difference to your risk.

The UK’s Department of Health recommends that we do a minimum of 150 minutes of exercise per week; this is a good target to aim for.

Fibroids are very common in black women with an estimated 55% of black women expected to develop them. This is significantly more common than in white women with black women being 2-3 times more likely to develop fibroids than their white counterparts.

The reason that fibroids are more common in black women is not fully understood but it is thought to be a combination of genetic and lifestyle factors.

The quest to understand why fibroids are more common in black women is an ongoing one, and one area that was explored a couple of years ago by researchers at Boston University was whether relaxers (chemical hair straighteners) increase a women’s risk of developing fibroids.

Relaxers are seemingly a good place to start when it comes to identifying factors that put black women at a higher risk of developing fibroids. This is a product that is specifically used by black women and is used by millions of us worldwide.  But, more importantly, as fibroids can be stimulated by the hormones oestrogen and progesterone and relaxers are known to contain chemicals that behave like hormones (phthalates), then logically we can hypothesise that use of relaxers may have an impact of the development of fibroids.

As part of the Black Women’s Health Study in the US, researchers explored whether relaxers may play a part in the development of fibroids. This study included 23,580 black women from across the US and they found a very slight increase (17% increase) in the rate of fibroids when women who  used relaxers were compared with women who had never used relaxers. They also found that there was a slightly positive trend when they looked at how often people used relaxers, how long and how many relaxer burns they experienced. So for example women who had used relaxers for more than seven years had the highest rate of fibroids, but this was still only slightly higher (23% higher) than women who never used relaxers.

Looking at this we could say that the findings suggest that relaxers may play a part in the development of fibroids but when you delve deeper it is harder to say for sure. Firstly, the study shows an association between fibroids and relaxers it doesn’t actually confirm that relaxers cause fibroids. Also, researchers found through DNA testing that black women with more African ancestry used relaxers more than those with more European ancestry and once they took ancestry into account there was less of a link between fibroids and relaxers. What this means is that the association between relaxers and fibroids in this study may have had nothing to do with the relaxers  playing a part in the development of fibroids but it was actually the degree of African ancestry that is the important factor.

The researchers therefore stated that:

“ We cannot rule out the possibility that greater African ancestry, thought to increase genetic predisposition to uterine leiomyomata  (fibroids), explains part or all of the observed association”.

Additionally, researchers didn’t have any information on the brands of relaxers women used or the exact chemicals that women would have been exposed to and how much they were exposed to. This makes it hard to say if women were in fact exposed to the hormone-like chemicals that are of concern when it comes to fibroids.

The take home message is that relaxers probably do not play a major role in the development of fibroids and if they do their impact is very small.  It would appear that the main risk factor is African Ancestry.

We do know that there are some lifestyle factors that can reduce a women’s risk of fibroids. These include exercise, maintaining a healthy weight, reducing your red meat consumption and eating a diet high in green vegetables.  So, we can all reduce our risk by adopting a healthy lifestyle

You can read the original research paper from the Black Women’s Health Study below.