We are developing a fibroids awareness, information and support programme. The first phase of this work was to understand the needs of women with fibroids and we achieved this by conducting some qualitative research.

The research project 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 findings from our work suggested that a significant number of women with fibroids do not have access to the support and information that they require to successfully manage their condition. You can read more about the findings on our blog here or download the full report here: Fibroids_Survey_Summary_Final

The findings of this survey are informing the direction of our work and since the publication of our report we have:

• Formed a Fibroids Ask the Expert Panel
• Published a fibroids booklet
• Hosted our first conference for women affected by fibroids
• Delivered presentations to churches and community groups
• Hosted a regular fibroids Twitter chat
• Created a fibroids blog and news series
• Launched a fibroids social media campaign in collaboration with Noire Wellness
• Contributed to the APPG’s fibroids inquiry
• Started working on  a fibroids fact sheet series
• Started organising a fibroids self-care webinar series

You can keep up-to-date on all our work in this area by signing up to our fibroids mailing list below:

For Immediate Release

2nd March 2018

Basseterre, St Kitts -This year the global theme for International Women’s Day on 8^th March is #PressForProgress and Noire Wellness and Lake Health and Wellbeing are calling for progress to be made to improve the experience of women with fibroids.

This initiative has been designed to raise awareness of key areas that need focus if there is to be equality in healthcare. Noire Wellness and Lake Health and Wellbeing are calling for:

• Breakthrough research into fibroids and ethnicity
• Patient insight on the impact of diet and exercise on fibroids
• A commitment to professional excellence when caring for women with a family history of fibroids and symptoms associated with fibroids
• Global and local support networks to ensure that women with fibroids never feel isolated
• Greater awareness of fibroids, its symptoms and impact on women’s lives, particularly the psycho-social impact.

Despite fibroids being very common a survey conducted in the UK by Lake Health and Wellbeing showed that there is a low level of awareness of fibroids and women don’t feel equipped to make an informed decision about their treatment¹. The survey revealed gaps in patient information on all aspects of fibroids and in the availability of peer support. Women also reported that fibroids affected their quality of life, affecting them both physically and emotionally.

Additionally, the UK’s All-Party Parliamentary Group on Women’s Health’s fibroids inquiry found that 43% of women were not satisfied with the information about their treatment choice and a third of women were not happy with their treatment². Furthermore 40% of women were not told about the short-term complications of their treatment and 50% were not told about the long-term complications.

Research has shown that fibroids are more common in black women with an estimated 50-80% of black women affected³. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger, multiple fibroids, and tend to develop more severe symptoms⁴.  The reason for this is unknown, but it is thought to be a combination of genetic, environmental and lifestyle factors.

The experience of women with fibroids reveals an inequality in healthcare that needs to be addressed.  Noire Wellness and Lake Health and Wellbeing believe that because fibroids are a women’s issue: it affects predominantly an ethnic minority group: and it is not life-threatening, it has been overlooked. But, many women are suffering, and something needs to be done to ensure that women receive the attention, support and quality of care they deserve.

Candice Bryan of Noire Wellness says:

“In order to truly provide a better experience for women living with fibroids, we must acknowledge that health inequalities continue to have a detrimental impact on the quality of life for black women living with fibroids across the globe.  It is time to collaborate and press for progress to provide solutions.”

Whilst Abi Begho from Lake Health and Wellbeing said:

“For too long women with fibroids have been neglected and it’s time for society to step up and address this inequality. We need to ensure that women, particularly black women, with fibroids have easy access to accurate, reliable information, appropriate support and a high standard of care to improve their wellbeing.”

The campaign will utilise social media to highlight what needs to be done to improve the experience of women with fibroids. The public can get involved by using the hashtag #PressForProgress in the week leading up to International Women’s Day to tell everyone of the change that needs to occur. To help, organisers have created a briefing which is available HERE.

Ends

NOTES TO EDITORS

If you would like to write a feature or interview the team behind the campaign, please contact Abi Begho/Candice Bryan

For more information please contact Noire Wellness/Lake Health and Wellbeing  email candice@noirewellness.com and abi.begho@thelakefoundation.com .

The campaign launches on Thursday 1^st March 2018.

ABOUT NOIRE WELLNESS

Noire Wellness is a wellness brand established in 2016 that aims to improve the health and well-being of African and Caribbean communities living in the UK through providing a range of evolving and enriching wellness experiences, nurturing the provision of community wellness hubs, community consultancy and a growing wellness network of professionals.

Website: www.noirewellness.com

Facebook: @noirewellness

Twitter: @noirewellness

ABOUT LAKE HEALTH AND WELLBEING

Lake Health and Wellbeing is a Caribbean based organization that aims to improve the health and wellbeing of the black community through research, public health interventions, giving patients a voice and raising awareness.

Website: www.lakehealthandwellbeing.com

Facebook: @lakehealthwellbeing

Twitter:  @lakehealthwell

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References

1. Lake Health and Wellbeing (formerly known as The Lake Foundation), (2014). Understanding the Needs of Women With Fibroids.
2. All-Party Parliamentary Group of Women’s Health, (2017). Informed Choice? Giving Women Control of Their Healthcare.
3. Wise L.  and Laughlin-Tommaso S. (2016). Epidemiology of Uterine Fibroids: From Menarche to Menopause. Clin Obstet Gynecol, Volume 59(1), p 2.
4. Radmila S., et al.  (2016).  Epidemiology of Uterine Myomas: A Review. Int J Fertil Steril, Volume 9 (4), p 424.

In the past it has been felt that fibroids may increase a woman’s risk of having a miscarriage, but two recent pieces of research should reassure women affected by fibroids who may be thinking of starting a family. Their work has shown that there is no link between fibroids and an increase in the risk of having a miscarriage.

Study on Fibroids and Miscarriage Risk by Women’s Health Research at Vanderbilt

Researchers at Women’s Health Research at Vanderbilt published their first piece of research in November 2017, although the data was made available in June. Their research was part of the Right from the Start study which explored how a women’s diet, health behaviours, medical history, fibroids and other factors may affect her pregnancy. It included 5, 512 women from eight cities in the US from 2000-2012 who were 18 or over and were either trying to get pregnant or were less than 12 weeks into their pregnancy.  During the course of  the study participants had an initial interview, an ultrasound scan, a telephone interview and a follow-up assessment.

They found that of the 5,512 women who took part in the study, 10.4% of them had at least one fibroid and 89.6% didn’t have fibroids. When they compared the rate of miscarriages in the group who had fibroids to the group of women who didn’t have fibroids, their rate was the same – 11%.

The researchers explained that other studies have reported a link between fibroids and miscarriages but this was because previous studies hadn’t taken into account other reasons for miscarriages.

To learn more about this work you can view their videos below.

The Women’s Health Research Centre at Vanderbilt published another study in November exploring the same issue – fibroids and miscarriage risk. They reviewed all research papers on this topic from January 1970 to December 2016 and vetted them, this gave them data from 21,829 pregnancies. Of these women 1,394 had fibroids and 20,435 did not. They carried out statistical analysis on this data and found that there was no difference in the rate of miscarriages in women with fibroids compared to women without fibroids.

Their team have put together a really useful infographic that explains their findings (please click on the image below to see a larger copy of it)

 What Does This Mean for Women with Fibroids?

As Prof Katherine Hartman stated in the above video, this is good news  as this is one less thing that women with fibroids have to worry about. Although she does caution that there may be rare types of fibroids or locations of fibroids that may cause a miscarriage but the risk is lower than previously thought.

Friday 1st December was World AIDS Day and this year’s theme was: ‘My health, my right’

This theme recognises the fact that many people living with HIV are denied their right to health. Their right to health includes access to good quality health services and medications and being treated with dignity and respect.

It was a particularly good day for the Caribbean as Anguilla, Antigua and Barbuda, Bermuda, the Cayman Islands, Montserrat and St Kitts and Nevis were certified by the World Health Organisation as having eliminated mother-to-child transmission of HIV and syphilis.  This follows the success of the Caribbean nation Cuba, in 2015, who became the first country in the world to achieve WHO certification for the elimination of mother-to-child transmission of HIV and syphilis.

This is fantastic news for the Caribbean where HIV is a significant public health challenge with 310,000 people living with HIV.  In 2007, it was estimated that 6,400 children in the region were infected with HIV, most of these through mother-to-child transmission. Children who are infected with HIV have a challenging start to life facing a life-time of medication, stigma, ill-health and possibly a shortened life span. With all this in mind, in 2010 the Regional Initiative for the Elimination of Mother-to-Child Transmission of HIV and Congenital Syphilis in Latin America and the Caribbean was launched.

This initiative is coordinated by the Pan-American Health Organisation and the United Nations Children Fund and its aim, at the time, was to eliminate mother-to-child transmission of HIV and congenital syphilis in all Caribbean countries and territories by 2015 and to reduce the transmission rate to 2%. Whilst only one country, Cuba, made the 2015 deadline and the transmission rate is above 2% (it’s now 9%, 52% less than in 2010) great progress has been made: since 2010 new infections in children have been reduced in the region by 52% and 74% of pregnant women with HIV now have access to anti-retroviral drugs which significantly reduces chances of passing on the virus to their children during pregnancy or breastfeeding.

The Caribbean should be very proud as it is ahead of the rest of the world and we hope that other Caribbean countries will follow the example set by these six Caribbean nations and put policies and procedures in place to eliminate the transmission of HIV from mother to child. This is very important in giving all children the best start in life and is a key step in the prevention HIV/AIDS in the Caribbean.

For more information on this work you can download the document below,  visit UNAIDS’ website here or watch the short video below.

Every year, on 14^th November, the world comes together to recognise World Diabetes Day.  Created by the International Diabetes Federation and the World Health Organisation in 1991 to address the escalating threat that diabetes poses, this is a day that aims to raise awareness by reaching a global audience. This year’s theme is: ‘Women and Diabetes – Our Right to a Healthy Future.’  ‘Why the focus on women?’  You may ask. The stats say it all.

Women and Diabetes

Currently there are over 199 million women living with diabetes throughout the world and research suggests that this could rise to a staggering 313 million women by 2040. Diabetes is the ninth leading cause of death in women with 2.1 million deaths per year being due to this condition.  Forty per cent of women with diabetes, around 60 million women, are of reproductive age. The complication here is that women with diabetes are more likely to have fertility problems and without access to pre-conception planning there is a higher risk of death and illness for both mother and child during pregnancy.

Additionally, one in seven pregnant women develop gestational diabetes. This is a type of diabetes that only develops during pregnancy. If it is not managed properly it can negatively affect both the expectant mother‘s and baby’s health.  In most cases, after pregnancy, gestational diabetes resolves on its own, but the mother is then at a higher risk of developing type two diabetes.

Finally, women with type 2 diabetes are ten times more likely to have coronary heart disease than  women who don’t have diabetes.

Due to these facts and figures there is a need to focus on women, raise awareness and ensure that health services are equipped to address the specific needs of women with regards to diabetes.

Black Women and Diabetes

Black women are at a significantly higher risk of developing diabetes than their white counterparts. In the US, diabetes affects 25% of black women in the 55 and over age group and it is the fourth leading cause of death in black American women of all ages.

Black women in the UK are also at increased risk of developing diabetes  and diabetes rates in the Caribbean and Africa are also high.

It is thought that the increased risk in black women is due to multiple factors including genetics and black women being more likely to have high blood pressure,  to be obese and be physically inactive.

What Can We Do?

Diabetes can be prevented by adopting a healthy lifestyle. We should endeavour to:

• Maintain a healthy weight
• Eat a healthy diet
• Get active: it doesn’t have to be structured exercise, just anything that increases your heart rate such as gardening, brisk walking, dancing, cycling, playing with the kids

Let’s all spread the word about the prevention of diabetes so that we can stop more women, especially black women, from developing this condition.

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References

International Diabetes Federation

American Diabetes Association. Diabetes in African American Communities Advocacy Fact Sheet.

After their successful 12-week, pop-up wellness hub last year, which was a health and fitness club, spa lounge and workshop zone all rolled into one, Noire Wellness will be hosting a fibroids wellness hub. This will be held on Sunday 26^th November at Wiseworks and will cover a range of topics including diet, exercise and the emotional impact of fibroids.

The wellness hub aims to empower women affected by fibroids giving them the information and practical support that they need to improve their well-being.

Noire Wellness is an organisation that aims to improve the health and wellness of the African and African-Caribbean community through the offer of local wellness hubs, community consultancy services and a growing wellness business network.

You can book your place on EventBrite here and for more information about the fibroids wellness hub, please download their flyer below or email  info@noirewellness.com

You can find out more about Noire Wellness by following them on Twitter, liking their page on Facebook or signing up to their newsletter here

At our recent Fibroid Focus conference an interesting question was raised: “Has anyone used the Mooncup?” There were a few blank stares, which came from us too, and then an attendee answered: “Yes, and it is so much better than tampons and pads.”

This little exchange got us thinking.

Many women with fibroids experience heavy prolonged periods meaning they use large quantities of pads and tampons. Over the last few years there has been quite a bit of focus on the chemicals in these products and this has raised concerns about possible health effects. This led to the formation of a number of companies who now manufacture organic feminine hygiene products to give women a natural alternative.

But are women with fibroids aware of all the options available when it comes to feminine hygiene products and are they aware of alternatives like the Mooncup (a menstrual cup made by Mooncup Ltd)? This is particularly important for women with fibroids, who are likely to need to use large quantities of pads and tampons, and may be concerned about their prolonged exposure to the chemicals in these products.

In this blog series we are going to introduce you to a selection of feminine hygiene products starting with the menstrual cup today.

What is a Menstrual Cup?

A menstrual cup is a small flexible cup usually made of silicone, but can also be made of rubber, that is inserted into the vagina and collects menstrual blood. Depending on the amount of flow the cup is removed every 4-8 hours, emptied, washed and reinserted. At the end of a woman’s period the cup can be sterilised and the same cup used again every month. The shelf life of menstrual cups is fairly long with manufacturers recommending that they be replaced, on average, every 5 years.

Many companies make menstrual cups and these include:

• Mooncup Ltd
• DivaCup
• Lunette
• IrisCup
• MeLuna

Are Menstrual Cups New?

The menstrual cup was invented by Leona Chalmers in the 1930s and she patented her design in 1935. So the menstrual cup is over 80 years old and has been used for decades.

Is it Safe to Use?

Research has shown that the cup is safe to use with only a very small number of issues reported.

There has been just one case of toxic shock syndrome linked to the use of a menstrual cup, making this a very rare occurrence.  Additionally, one research paper reported that a woman may have developed adenomyosis and endometriosis  after using a menstrual cup for four years and the Endometriosis Research Centre in the US has called for more research to determine if there is link between the use of the menstrual cup and endometriosis.

Several studies have shown that, provided the cup is used properly and is kept clean, the risk of infection is low.  Also, for those worried about allergic reactions the majority of cups are made from medical grade silicone and silicone sensitivity is very rare. For those with a latex allergy they just need to ensure that they use a cup that is made entirely of silicone and does not contain rubber.

The Benefits

There are many benefits of using a menstrual cup. These include:

• Environmentally friendly – one cup can be used for 5 years which means there is less waste created than if tampons or pads are used
• Cost effective – menstrual cups costs about £20 and last for up to 5 years so this works out much cheaper than pads which are estimated to cost about £80 per year and tampons about £43 per year.
• No exposure to toxic chemicals – menstrual cups do not contain the bleaches, pesticides and other chemicals that the majority of pads and tampons contain
• Doesn’t cause dryness –tampons and pads can cause vaginal dryness because they are made of absorbent material, the cup simply collects fluid and isn’t drying
• Less leaks

The Drawbacks

There are some disadvantages associated with the menstrual cup:

• Inserting and removing the cup can be challenging
• Emptying the cup can be quite messy
• Women with certain conditions may not find a cup that fits properly. This has been reported for women with a dropped uterus and certain types of fibroids
• The cup needs to be kept clean to avoid infection so it requires some maintenance every month and needs to be sterilised after each cycle

Conclusion

If you’re looking for an alternative to tampons and pads a menstrual cup is an option you can explore. It may take some time to get used to it, but we recommend that you give it a few months before you make a judgement.