July is recognised as Fibroid Awareness Month in some countries and it’s a great opportunity to put the spotlight on a health condition that receives little attention.

This year, we are delighted to be a part of the newly formed Global Fibroids Alliance whose aim is to raise awareness of fibroids and advocate for the change that is required to improve the health and wellbeing of women with fibroids as well as the quality of care women receive.

The Global Fibroids Alliance is a diverse group of health and wellbeing practitioners, researchers and consultants who have come together to strengthen the global approach to improving the information, treatment, care and support for all those affected by fibroids.  We hail from the Caribbean, US, UK and France and are calling for:

1. More awareness campaigns on fibroids
2. Fibroids education to be part of menstrual health education and delivered to all girls from the age of 10.
3. Every country to provide women with all the treatment options for fibroids.
4. Each woman suspected to have fibroids to be carefully assessed, and a treatment and wellness plan be developed in collaboration with the patient that suits the patient’s specific situation and is based on the concept of informed and shared decision-making.
5. Collaborative alliances to be formed between traditional and non-traditional/complementary therapists, gynaecologists and counsellors to ensure that women are receiving a holistic and comprehensive approach when deciding on their wellness plans.
6. More research to establish the cause of fibroids so that more effective treatments can be developed.
7.  More attention on the psycho-social impact of fibroids so that we can determine the full impact of fibroids and the support that women throughout the world require.

As part of Fibroid Awareness Month, we are delighted to invite women with fibroids to our first event which is a webinar on Fibroids and COVID-19.  This webinar aims to explore how the COVID-19 pandemic may be affecting women with fibroids and will discuss what women can do to improve their physical and mental health during this challenging period.

Speakers will include:

• Dr Fanta Waterman, Managing Director, Serrette Brown Research and Consulting LLC.
• Muku Qes Ua, Psychotherapist, Herbalist and Homeopath
• Olivia Haltman, Integrative Humanistic Counsellor, OH Counselling Services

You can register for this webinar here and if you have any questions, please email GFA2020@mail.com

We look forward to seeing you then and you can find out more about the members of the Global Fibroids Alliance here

Today’s blog post comes from Mariana Ndrio. Mariana is a second-year medical student at the University of Medicine & Health Sciences (UMHS) in St. Kitts and is currently serving as the President of the American Medical Student Association (AMSA) on campus.

Mariana has recently started volunteering with us as a research assistant and is supporting us as we conduct our fibroids qualitative study. She is also creating a fibroids and COVID-19 infographic which will be published shortly.  

Today, Mariana discusses the challenges that fibroids patients may be experiencing during this COVID-19 pandemic and shares some evidence-based self-care and stress management tips to help women with fibroids manage during this difficult period.

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As the COVID-19 pandemic continues to prompt stressful changes to our daily routine and lifestyle, health-related worries regarding ourselves and loved ones have undoubtedly intensified. While the growing uncertainties stemming from financial difficulties and social isolation impact the health and personal decision-making of everyone across the globe, women suffering from uterine fibroids are facing unprecedented challenges in their attempts to preserve their mental and physical wellbeing.

Uterine fibroids are the most common benign tumours among women. While some cases of fibroids are accompanied by no side effects, other cases contain patterns of heavy menstrual bleeding, long and irregular periods, pelvic pressure and pain, constipation, frequent urination, and in rare occasions, infertility.

Treatment for fibroids can range from no treatment at all to surgery, depending on the severity of symptoms. Aside from apparent physical symptoms, the psychological impact of fibroids should not be disregarded. In a 2013 national survey of 968 women suffering from fibroids, 79% of the surveyed women expressed fear that their fibroids will grow or experience further health complications. According to a 2014 study assessing the emotional impact of fibroids half of the participating women reported feeling helpless and that they had no control over their fibroids, because of the difficulty managing and predicting the heavy menstrual flow.

Black women are 3 times more likely to become diagnosed with fibroids than white women, just as they are more likely to develop fibroids at a younger age; moreover, their fibroid size, frequency, and symptom severity are much greater.

As a medical student that remains generally impressed by the increasing amount of existing medical and scientific knowledge, researching gynaecological diseases such as fibroids have led me to a stark realization: that despite the high prevalence of uterine fibroids among women, not enough high-quality data is available to formulate evidence-based guidelines that address patients’ needs adequately. This points to a larger, unforgiving gap in medical knowledge pertaining to common diseases affecting women, and when combined with the gap in medical knowledge regarding COVID-19, a mixture of increased emotional stress and confusion is to follow. Such stress can hinder overall physical health and may exacerbate fibroid symptoms by influencing cycle length, vaginal bleeding patterns, and painful periods. If you are feeling uncertain or anxious, know that you are not alone; your worries and feelings are valid.

For that matter, we compiled some scientifically-backed tips that could be helpful in restoring a sense of control and ease in these difficult and unprecedented times.

First, don’t hesitate to reach out.

While staying home and self-isolating is the best way to stay protected from COVID-19 and prevent the spread of the virus, this should not halt or compromise access to necessary medical care for women suffering from fibroids.

If you need to see a healthcare provider for a gynaecological reason, reach out to your medical provider and try to see if they are able to set up a virtual appointment or address non-urgent concerns over the phone (such as prescription refills). 

While it is true that a lot of non-urgent appointments and elective surgeries are cancelled, many medical professionals and medical facilities are encouraged to use and have already embraced telehealth services which allow long-distance patient and clinician care via remote and virtual appointments, intervention, education, and monitoring. Telehealth services vary based on your location and medical provider. But even if you are having difficulties accessing gynaecological telehealth services locally, you might be able to reach out to service providers in other countries such as the U.K, U.S, or Canada. For example, USA Fibroid Centers provide virtual appointments you can schedule online. Women to Women OB GYN Care, located in Florida, states in their website that they welcome appointments from women internationally and the Caribbean. The Pan American Health Organization (PAHO) has also attempted to establish or expand telehealth services in a lot of Caribbean countries.

Keep up to date with your prescribed medications.

Keeping up to date with your prescribed medications can be confusing during a pandemic. You might feel like your regular access to your medical provider or pharmacy is compromised, you might worry that your current medications might be making you vulnerable to the COVID-19 or you might be feeling uncertain regarding the continuation of your current prescribed medications or supplements.

Nonetheless, it is important that you continue taking your prescribed medications and/or supplements unless otherwise advised by your physician.  If you are receiving preoperative therapy (Zoladex, Lupron, etc.) but your surgery is cancelled, ask your physician regarding the course of your current prescribed therapy. If you have been prescribed a drug called Esmya (Ulipristal Acetate), you must consult with your physician regarding its discontinuation; as of 2020, Esmya’s license has been suspended due to the risk of serious liver injury. As mentioned previously, do not hesitate to discuss any concerns you might have regarding your current medications and supplements with your medical provider.

Plan ahead.

Studies show that women with fibroids might present heavier, prolonged bleeding and frequent, irregular periods. While everyone during a pandemic is worrying and trying to secure produce and disinfecting supplies, women suffering from fibroids have to also think about stocking up on female hygiene products. Especially, since frequent trips to the stores must be limited due to social distancing/quarantine rules.

Ensure that you have enough gynaecological hygiene products at home, to eliminate frequent trips to the store and avoid exposure to the virus. This by no means should be considered as the green light to go into a buying frenzy. Try to remain conscientious of the needs of others.

If buying hygiene products in bulk is not an option due to financial difficulty or store availability, reach out to local non-governmental organizations (NGOs) or philanthropic entities, that might be willing to donate hygiene products such as the Days for Girls International Organization or even by reaching out directly to product manufacturers. Local grassroots organizations or associations in your region might also be able to donate hygiene items. Moreover, the governmental departments of public health or genders affairs might be willing to assist women in need of hygiene products.

This pandemic could also be a good time to consider reusable, more economical and environmentally friendly menstruation products such as washable pads, menstruation caps, or absorbent underwear.  Check Days for Girls .org and learn how to make sanitary washable period pads during the COVD-19 pandemic, diligently following sanitary safety precautions.

Maintain healthy eating habits. 

Research has shown that following a healthy balanced diet, filled with fruits and vegetables, could lower the risk of developing fibroids and may help to alleviate symptoms.

While access to your usual healthy foods might be compromised at the moment, try to make healthy dietary choices while in quarantine. More specifically, dieticians recommend an increase in the consumption of cruciferous vegetables such as cabbage, broccoli, and kale. This category of food contains a phytochemical called indole-3-carbinol which recent research has suggested may prevent the cellular proliferation of fibroids and consequently prevent exacerbation of fibroid symptoms.

For many years, there has been a significant amount of scientific evidence that vitamin D may inhibit fibroid growth. Get your serum vitamin D levels tested and supplement (with medical supervision) as needed to correct a deficiency. A few recently published studies assessing the role of vitamin D against COVID-19, suggested that there is a possible link between the two and that vitamin D can have a protective effect against COVID-19.

Stay hydrated by consuming adequate amounts of water during the day and eliminate alcohol and caffeine. Researchers are advising women to avoid alcohol and caffeine because these substances are metabolized by the liver adding more stress on it and making it work less effectively at metabolizing oestrogen in the body.  Additionally, amidst the COVD-19 pandemic, the World Health Organization (WHO) urged the public to reduce alcohol consumption because alcohol compromises the body’s immune system and increases the risk of adverse health outcomes, making people more vulnerable to COVID-19. In other words, by cutting out alcoholic beverages, you are protecting yourself from adverse outcomes from both the COVID-19 and fibroids.

In addition, researchers believe that endocrine-disrupting chemicals (EDCs) which mimic oestrogen activity, may fuel fibroid growth. Examples include processed foods which contain various oestrogen-like preservatives; bisphenol A in water bottles, canned foods and plastic containers; various pesticides, herbicides, insecticides; and additive hormones and steroids used in meats and dairy products.

Try to choose organic, locally grown and in-season foods that are hormone and pesticide-free. Attentively wash any produce and peel fruits and vegetables. Reduce the use of plastics whenever possible and avoid reusing plastic water bottles or microwave food in plastic containers.

Stay active.

Research shows that a higher BMI – body mass index – is linked to the development of fibroids. By exercising you can reduce your BMI and prevent the fibroids’ growth. It may also help alleviate symptoms caused by fibroids. At the same time, exercise improves mental health by reducing anxiety, depression, and negative mood and by improving self-esteem.

Continue performing simple or recreational household chores and find an indoor workout routine such as yoga or aerobic exercises that you can perform at home while keeping up with the rules of quarantine. Choose what works best for you, based on your physical fitness and medical advice.

Be gentle to yourself—your body & your mind

On days that you are feeling pain and other fibroid symptoms, rest up and give your body time to heal. Try to soothe cramps by applying heat and wear comfortable clothes.

It’s okay to spend a whole day in bed recovering. Be gentle with yourself and do not undermine what your body is trying to tell you.

We live in a society where time and productivity are precious and synonyms for money and self-worth. Yet, nothing is more precious than your physical and emotional well-being. Do not feel guilty for taking some time to rest and recover.

Although self-care looks different for everyone and should be based on your personal needs and situation, there are a few suggestions that could work for you and help you boost your mental well-being:

• Try to meditate and practice mindfulness. You can find a lot of free guided meditations online or on YouTube.
• Monitor your thoughts and feelings in a journal.
• Practice good sleep hygiene. Maintain a sufficient sleep schedule, stay away from electronic devices while in bed, and start a regular bedtime routine—such as drinking a soothing tea, taking a warm bath or shower, reading, etc.
• Limit the amount of media you ingest daily.
• If you live alone reach out to family and friends via phone or video. If you live with family, roommates, or a partner use this time to connect and nurture your relationships.

And remember, during these confusing and unprecedented times and while you are feeling that this pandemic is affecting you, in particular, a bit harder than the rest, there is always a community of women who are feeling exactly like you—you are not alone.

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Sources

1. Mayo Clinic website: “Uterine Fibroids.” – http://www.mayoclinic.com/health/uterine-fibroids/DS00078.
2. Seminars in reproductive medicine: “Uterine Fibroids: Burden and Unmet Medical Need.” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193285/
3. CARE About Fibroids: “Uterine Fibroids: The Emotional, Physical, and Economic Toll.” – http://www.careaboutfibroids.org/toll-of-fibroids.html
4. The BMJ, British Medical Journal Publishing Group:  “Uterine Fibroid Drug Is Recalled after Case of Liver Failure Requiring Transplant Prompts EU Review.” www.bmj.com/content/368/bmj.m1112.
5. American Journal of Clinical Nutrition: “Dietary glycemic index and load in relation to risk of uterine leiomyomata in the Black Women’s Health Study.” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854903/
6. Journal of Obstetrics and Gynaecology: “Vegetarian diet and reduced uterine fibroids risk: A case-control study in Nanjing, China.” https://www.ncbi.nlm.nih.gov/pubmed/26458740
7. Reproductive Biomedicine Online Journal: “Quercetin and indole-3-carbinol inhibit extracellular matrix expression in human primary uterine leiomyoma cells” – https://www.sciencedirect.com/science/article/abs/pii/S1472648320300249
8. Fertility and Sterility Journal:  “Endocrine-disrupting chemicals and uterine fibroids.”- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051569/
9. Healthline Magazine: “How Alcohol Can Affect your Immune System.”- https://www.healthline.com/health-news/can-alcohol-hurt-your-immune-system-during-covid-19-outbreak
10. The Elusive Magical Solution: The Relationship between Vitamin D and Fibroids- https://scholars.direct/Articles/gynecology-and-obstetrics/ago-3-008.php?jid=gynecology-and-obstetrics
11. The role of Vitamin D in the prevention of Coronavirus Disease 2019 infection and mortality- (https://www.researchsquare.com/article/rs-21211/v1)
12. American Journal of Epidemiology: “Association of Physical Activity with Development of Uterine Leiomyoma.”                – https://academic.oup.com/aje/article/165/2/157/97971
13. Mayo Clinic: “ COVID-19 and Your Mental Health”- https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/mental-health-covid-19/art-20482731
14. Lake Health and Wellbeing: “Fibroids and your Mental Health.”- https://lakehealthandwellbeing.com/newsite/wp-content/uploads/2019/05/FibroidsANDEmotionalWellbeingVersion2.pdf

We are absolutely delighted to inform you that our fibroids research study has now begun after receiving ethics approval from the Ministry of Health last month. Our research project will explore the experiences of women residing in St Kitts and Nevis, who have been affected by fibroids.

The reason for trying to understand these experiences is because it has become clear that fibroids are a common health issue affecting women in St Kitts and Nevis. It is therefore important to explore if fibroids are affecting the quality of life of women in the Federation and understand what challenges women may be facing so we can provide effective and appropriate support, advocate on behalf of women, and ensure that women receive the best medical care possible.

We’re Looking For Volunteers

If you live in St Kitts and Nevis, are between the ages of 18 and 55 and have been diagnosed with fibroids within the last 5 years (any time between January 2015 and January 2020), you can take part in this research.

As a participant, you will be asked to take part in a 90-minute interview and in exchange for your time, you will receive $50EC.

 More Information

If you’re interested in taking part in this study or have any questions, please contact Abi Begho by emailing research@lakehealthandwellbeing.com or calling  1 869 765 8702.

Ethics Approval Details

This research study was granted ethics approval by St Kitts Ministry of Health’s Interim Ethics Review Committee on 12^th December 2019 (our ethics approval number is IERC-2019-12-035)

Research Partners

                                                 

This project is a partnership between Lake Health and Wellbeing, Serrette Brown Research and Consulting and Soca Girls Rock!

We are absolutely delighted to announce that we recently received a grant from Soca Girls Rock! (SGR!) to support our new fibroids research project.

At the time of writing, we were just about to submit our application to the Ministry of Health’s Interim Ethics Review Committee for ethics approval and once that is granted our project will begin.

Our new project is a qualitative research study that will explore the experiences of women living in St Kitts and Nevis who have been affected by fibroids. This work aims to provide an in-depth exploration of women’s experiences and help us identify any psychosocial, personal, institutional and physical challenges that women with fibroids may experience that may impact their health and wellbeing. By exploring these issues, we can develop an understanding of how fibroids may affect a woman’s quality of life and this will enable us to begin to focus on strategies to support women who have been affected by fibroids.

To our knowledge, there has been no research conducted in St Kitts and Nevis to understand the experiences of women living with fibroids. Therefore, this study will make a significant contribution to filling an information gap in women’s health.

We would like to say a big thank you to Soca Girls Rock! for supporting this project and for continuing to support women-led, Caribbean-based initiatives.

When asked about the importance of providing funds to women-led organisations to support research projects like this, SGR! stated:

“The challenges of womanhood can and should be addressed by women.”

We are also grateful to SGR! for providing us with access to the technical expertise to conduct this research project by facilitating a collaboration with Dr Fanta Waterman (MPH, PhD), the Managing Director of Serrette Brown Research and Consulting.  We are very much looking forward to working with Dr Waterman and appreciate all the useful insight and advice that she has already provided.

About Soca Girls Rock!

Soca Girls Rock! aims to address the unique set of social and economic challenges that the Caribbean faces. These challenges include access to quality education and health care, high unemployment rates for youth and women, high poverty and crime rates, and income inequality. SGR! tackles these issues through its unique and innovative approach to leadership, activism, and civic engagement. They harness the collective time, talent, and treasure of self-identified Caribbean women, living in and outside of the Region, to provide technical and financial assistance to non-governmental organizations (NGOs) committed to social change.

 About Serrette Brown Research and Consulting

Serrette Brown Research and Consulting (SBRC) is a boutique research consulting practice specializing in epidemiology, population health research, program evaluation, evidence gap analyses, digital health and publications development strategy.

They partner with non-profits, non-government organizations (NGO), biopharmaceutical companies, health services research organizations and policy implementation agencies based in the United States, Europe and the Caribbean. SBRC staff have been the recipient of research awards and featured on national television.

More Information

If you have any questions about this project or would like any further information, please don’t hesitate to get in touch with us by email research@lakehealthandwellbeing.com

We’re delighted to announce that we have once again teamed up with Because We Care to host another women’s health event in St Kitts.

Girl Talk: Diabetes will focus on women and diabetes and will take place on Saturday 14th September. We’ll be having a panel of excellent speakers covering topics such as:

• An Introduction to Diabetes
• Diabetes and its Complication
• Living with Diabetes

We’ll also have a small wellness market featuring health, wellbeing and wellness brands, fantastic raffle prizes, free health checks, food and more!

More details to follow, so please stay tuned!

This event is the second event in this series. Our first event focused on fibroids and we had a great day learning more about fibroids and its impact on women. You can read about our previous event here

If you would like to join us for this event, you can register below and make the payment on the day ($90EC).

The information provided in the form below will enable us to contact you about the event regarding updates and important information. We will only use it for this purpose.

No Fields Found.

We look forward to seeing you on 14th September and if you have any questions, please email us or call 765 8702.

We would like to say a big thank you to everyone who supported our recent campaign where organisations from the Caribbean, UK, US and France joined forces to put the spotlight on fibroids.

We really appreciate all your emails, comments, retweets and shares which all helped us reach more and more women.

This is wonderful. We would love to get involved! Please shoot us an email at info@fibroidfighters.com.

— Fibroid Fighters (@FibroidFighter) June 24, 2019

This. Is. Major!

— DriedInk (@FictionConnect) June 24, 2019

Great #Awareness 👏 Presumed #fibroids could also be uterine #sarcoma #leiomyosarcoma as no preop test or imaging can differentiate. Good to be aware of differentiatial diagnosis especially if considering surgery as #morcellation can cause tissue dissemination & worsen prognosis

— Ant Martina B (@martina_ant79) June 25, 2019

Our campaign highlighted the need for a global change where all stakeholders are better informed about fibroids so they are empowered to take action to improve the health and wellbeing of the many women affected by this condition.

Specifically, we were calling for a greater level of awareness of:

• The symptoms of fibroids to facilitate an early and accurate diagnosis;
• All the treatment options available so that women can make an informed decision about the treatment that best suits their situation; and
• What actions women with fibroids can take to improve their physical, mental and spiritual wellbeing

If you missed our campaign, you can read about this joint effort here.

We’ll continue to work with our global partners to raise awareness and provide support to women who have been affected by fibroids. In the meantime, you can find out more about our fibroids information and support programme here.

Check out some tweets from some of our global partners and you can visit social media to read through all our posts during the campaign. And, if you have any questions or comments you can leave them in the comments box below or email us.

NEWS! We are proud to join @lakehealthwell @kmtrising @OHServices2018 @fibroidforum @FibromeInfoFr @NoireWellness @Endoandpcosbb & @DrSydneyjd in a new global campaign calling for a greater focus on #fibroids. Read: https://t.co/pkMniB5Ief #WomensHealth #FibroidAwarenessMonth pic.twitter.com/vJaCM7TNoX

— CAREAboutFibroids (@CAREAbtFibroids) June 24, 2019

Our Global Fibroid Campaign is here! We have teamed up with organisations across the world to spread awareness on #fibroids. Affecting over 150M women, it impacts one’s emotional and physical well-being. @lakehealthwell @kmtrising @FibromeInfoFr . Read https://t.co/sBFhtD3mF6

— OH Services (@OHServices2018) June 24, 2019

Uterine fibroids (also known as leiomyomas or myomas) are the most common form of benign uterine tumors.
Do you know the symptoms? Knowing them can help facilitate an early and accurate diagnosis. #fibroids #uterinefibroids#womenshealthmatters@lakehealthwell @JuliaMandeville pic.twitter.com/58hQnkNKQS

— Barbados Association of Endometriosis and PCOS (@Endoandpcosbb) June 25, 2019

For Immediate Release

24th June 2019

Organisations from the Caribbean, US, UK and France have joined forces to launch a global campaign calling for a greater focus on fibroids.

The campaign highlights the need for a global change where all stakeholders (healthcare professionals, women and their families) are better informed about fibroids so they are empowered to take action to improve the health and wellbeing of the many women affected by this condition.

Specifically, organisers are calling for a greater awareness of:

• The symptoms of fibroids to facilitate an early and accurate diagnosis;
• All the treatment options available so that women can make an informed decision about the treatment that best suits their situation; and
• What actions women with fibroids can take to improve both their physical, mental and spiritual wellbeing

Fibroids are non-cancerous growths that develop in or on the outer surface of the womb affecting an estimated 171 million women worldwide in 2013 and, in 2010, fibroids were estimated to cost the health sector in Europe €163 Million.^1,2

Despite being very common it has been shown that there is a low level of awareness of fibroids and women don’t feel equipped to make an informed decision about their treatment^3,6.

Studies have also shown that fibroids are more common in black women with an estimated 80% of black women being affected⁴. 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 symptoms⁵.  The reason for this is unknown, but it is thought to be a combination of genetic, environmental and lifestyle factors. Compounded experiences of racism and internalised racism are also seen to be contributory factors.

Fibroids tend to be overlooked because they are not life-threatening, but fibroids can significantly affect a woman’s quality of life leading to both physical and psychosocial effects.  It’s important that a greater focus is placed on fibroids to ensure that more research is conducted to fully understand this important women’s health issue, and to ensure that more support and information is available that empowers all women with fibroids.

Julia Mandeville, Public Health and Advocacy Manager, Barbados Association of Endometriosis and P.C.O.S explained that:

“Women’s health has not received the level of attention warranted. We stand now, as a collective, understanding that the gaps in women’s health care can lead to significant public health problems if left unaddressed. One such problem is the lack of awareness and education surrounding menstruation and menstrual health disorders which research has shown, negatively impacts the psychological, physical, social and financial wellbeing of those diagnosed with these conditions. Thus, it is critical that women and girls are equipped with relevant, evidence-based information to become more competent and confident advocates of their health, and obtain the resources and treatments needed to improve their health-related quality of life.”

Abi Begho, Founder of Lake Health and Wellbeing, based in St Kitts and Nevis said:

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

Whilst Dr Sydney Dillard, Associate Professor at Du Paul University stated:

“Throughout the world fibroids tend to be trivialised without a real appreciation for the way fibroids can impact a women’s quality of life. The impact is wide-reaching affecting women’s physical health, mental wellbeing, relationships and creating challenges in the work environment. By everyone being better informed we can ensure early diagnosis; prompt, appropriate treatment and the chance to adequately address the psychosocial impact of fibroids.”

The organisers behind this campaign are encouraging women to access more information by visiting the campaign page and to contact the organisations in their region if they would like further support.

Ends

Notes to Editors

This is a joint campaign of the following organisations who raise awareness, provide information and support to those who have been affected by fibroids and advocate on behalf of women to improve the quality of care.

Barbados Association of Endometriosis and PCOS – The Barbados Association of Endometriosis and PCOS is a registered non-profit organization in Barbados which seeks to educate citizens and advocate for those who have Endometriosis, Polycystic Ovarian Syndrome and other pelvic conditions (including Uterine Fibroids).

Website: http://endoandpcosbb.com/

Email: julia.mandeville@endoandpcosbb.com

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CARE About Fibroids – CARE About Fibroids is a Washington, DC-based non-profit whose mission is to elevate uterine fibroids as a women’s health issue and drive change. Bringing together many of the nation’s most respected women’s health advocacy and policy-focused organizations to advance solutions, CARE About Fibroids is a catalyst for increased awareness, research and education about uterine fibroids, leading to earlier diagnosis and improved treatment.

Website: http://www.careaboutfibroids.org

Contact: http://www.careaboutfibroids.org/contact.html

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Fibroid Awareness Trinidad and Tobago – is a registered NGO based in Trinidad and Tobago that focuses on educating and empowering girls and women through advocacy and driving awareness on fibroids and other issues of the uterus.

Website: https://www.ttconfidenceproject.org/

Email address: factt2014@gmail.com

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Fibrome Info France – Fibrome Info France is the first patient association in France that informs, educates and supports women with uterine fibroids. The association was born out of the lack of information and awareness on this disease which affects 30 to 60% of women of childbearing age and is the main cause of removal of the uterus in France. Fibrome Info France has a triple mission:

• Information and awareness on uterine fibroids
• The support of women with fibroids in the care process
• The implementation of actions to improve the management of fibroids

Website http://fibrome-info-france.org/

Email address: contact@fibrome-info-france.org

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KMT Rising – KMT Rising is a UK-based organisation that is dedicated to the optimum health and wellness of all women around the globe; ensuring that their personal, emotional and health-related needs are catered for through a range of bespoke holistic packages. They also provide very unique Fibroid products on sale internationally:

• Fibroid Assessment Check List
• So you have Fibroids – Next steps guide
• Get yourself checked for Fibroids guide

Website: https://www.kmtrising.com/

Email address: kmtrisingltd@gmail.com

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Lake Health and Wellbeing – Lake Health and Wellbeing is based in St Kitts and Nevis and aims to improve the health and wellbeing of their local, regional and online community through health promotion, public health interventions, conducting research and offering information and support to those with concerns about their health. They have a fibroids information and support program which consists of events, publications, campaigns and more.

Website: www.lakehealthandwellbeing.com

Email address:  info@lakehealthandwellbeing.com

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Noire Wellness – Noire Wellness is a UK-based organisation that takes a public health and wellbeing approach to reducing health inequalities through culturally sensitive interventions

Website: www.noirewellness.com

Email address: info@noirewellness.com

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OH Counselling Services – OH Counselling Services is a UK-based organisation that provides one-to-one Counselling, EMDR Therapy, Group Therapies, Workshops and Seminars.   Their services are offered to adults, young people and all groups from different backgrounds and walks of life.

Website https://www.ohcounsellingservices.com

Email address: ohservices@counsellor.com

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The Fibroid Forum – The Fibroid Forum is UK-based and raises awareness, shares information, promotes women’s wellness and supports fibroid sufferers

Email address: thefibroidforum@gmail.com

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References

1. Theo, V., et al. (2015). Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 386 (9995), pp. 743-800
2. Hunt, P., Sathyanarayana, S., Fowler, P. and Trasande, L. (2016). Female Reproductive Disorders, Diseases, and Costs of Exposure to Endocrine Disrupting Chemicals in the European Union. The Journal of Clinical Endocrinology & Metabolism, 101(4), pp.1562-1570.
3. Lake Health and Wellbeing (formerly known as The Lake Foundation), (2014). Understanding the Needs of Women With Fibroids.
4. Wise, L. and Laughlin-Tommaso, S. (2016). Epidemiology of Uterine Fibroids. Clinical Obstetrics and Gynecology, 59(1), pp.2-24.
5. Radmila S., et al.  (2016).  Epidemiology of Uterine Myomas: A Review. Int J Fertil Steril, Volume 9 (4), pp. 424.
6. All-Party Parliamentary Group of Women’s Health, (2017). Informed Choice? Giving Women Control of Their Healthcare.

On 1^st June 2019, we’ll be hosting a webinar on the emotional impact of fibroids, an issue that is often neglected, but we believe this is a very important area to focus on.

When many of us think about fibroids and its effects, we tend to think about the physical and medical symptoms, such as heavy menstrual bleeding, prolonged periods, abdominal pain, anaemia and back pain.  The emotional and psychological impact of fibroids is not at the forefront of women’s minds or even their doctor’s, but it is very important that this is addressed to ensure a complete recovery.

We first identified the importance of exploring the emotional impact of fibroids in 2014, when we conducted a survey to understand the needs of women with fibroids. As we were analysing the results of the survey, we noticed that a significant number of women were describing how living with fibroids was affecting their mental wellbeing. For example, women said the following:

 “I have hated life at times because of fibroids. I feel like I am being punished for something.”

“Depression from feeling that my only options were drugs or surgery”

“Fear of not being able to have children”

“Just a constant fear of what they could become”

As a result of this, we started to explore this issue further by speaking to women who attended our events and soon realised that this was a much wider problem. To compound this issue there was little information available, at the time, about the emotional impact of fibroids and no services to support women in addressing these issues.

We decided that going forward, the emotional and psychological impact of fibroids would be embedded in all our work. This would ensure that women are able to identify, understand and address the emotional impact of fibroids. We hope this will allow women to get help promptly and develop the resilience and skills required to improve their mental health, should it be affected by their experience with fibroids.

So far, we have organised two conferences aimed at women with fibroids, one in London and one in St Kitts, and both covered the emotional impact of fibroids. We worked with accredited counsellor Olivia Haltman to develop a fact sheet on this topic and we’ll soon be updating our fibroids booklet to include information on fibroids and women’s wellbeing. We were also delighted to see that Olivia Haltman has developed the first online course on the emotional impact of fibroids after our work together revealed this was much needed.

Our latest initiative is our webinar on 1^st June which will feature Olivia Haltman, founder of OH Services and Jo-Ann Hamilton, founder of Rare Birds.

In this webinar, Olivia will take attendees through how living with fibroids can affect a woman’s mental health and how women with fibroids can improve their emotional wellbeing.

We’re also honoured to have Jo-Ann Hamilton, the Founder of Rare Birds, sharing her 10-year experience with fibroids, how this experience affected her mental wellbeing and how she overcame this challenging journey.

If you’ve been affected by fibroids, you are very welcome to attend this webinar. register for this webinar here or if you have any questions, please email us at events@lakehealthandwellbeing.com

On 30th March, we were delighted to join forces with Because We Care to host our first Girl Talk event.

Girl Talk is our new event series that aims to provide a forum for informative, informal and empowering discussions about women’s health. We hope that these events will enable women to take control of their health and that of their families, and therefore build a stronger, healthier nation.

Our first event focused on fibroids. This is an area that is often overlooked leading to a lack of awareness, information, and support for those who have been affected. We want to correct that. We also want to overcome the stigma that can be associated with fibroids by creating a safe space to discuss fibroids, its impact on women and solutions.

We were delighted to have a panel of esteemed speakers covering various aspects of fibroids. Speakers included:

• Dr Hazel Laws, Chief Medical Officer, St Kitts – Fibroids and Women’s Health in St Kitts
• Dr Deborah Williams, Professor of Pathology – What Are Fibroids?
• Tammy Cook – My Fibroids Story
• Dr Lescott, Medical Doctor – Fibroids and Nutrition
• Dr Pereira, Clinical Psychologist – Living well with fibroids and chronic illness
• Dr Lawrence, Medical Doctor – The treatment of fibroids

We also had a small wellness market, fantastic raffle prizes and free health checks for all attendees.

 A Summary of the Day

 Fibroids and Women’s Health in St Kitts and Nevis

The event started with a presentation by Dr Hazel Laws who provided an overview of women’s health in St Kitts and Nevis.

Dr Laws explained that data suggests that women in the Federation are more likely to be affected by non-communicable diseases (NCDs) like cancer and diabetes, but the data may not be giving the full picture as it may be that women are more likely to visit their doctor and seek help than men, and this is what the data is reflecting.

Dr Laws also summarised some of the work that the Ministry of Health is doing to improve women’s health through projects like:

• The ASSIST (Applying Science to Strengthen and Improve Systems) Project which is exploring improving the quality of care offered to pregnant women and children
• WHIP (The Women’s Health Improvement Plan)

Then Dr Laws focused specifically on fibroids and explained that 78 women in St Kitts and Nevis had a surgical intervention for fibroids in 2018. Furthermore, anecdotal evidence collected from OBGYN specialists suggest that over 60% of 35-50-year-old women in St Kitts and Nevis have uterine fibroids with 30% of these women being symptomatic.

Based on this data, Dr Laws stated that fibroids should be raised as a public health concern especially as the lived experience of women with fibroids can be very challenging and very often women suffer in silence. She ended by saying that there is a need to educate women and improve access to care.

What Are Fibroids and their Impact on Women

Next on the agenda was Dr Williams who provided an overview of what fibroids are and touched on their impact on women.

Dr Williams raised some concern that there is little research being conducted on fibroids so the information available on the causes is very limited which then makes it hard for women to take steps to prevent or reduce their risk of developing fibroids.

In summarising the impact of fibroids on women, Dr Williams used data from the US which showed the following with respect to quality of life:

• 28-40% of women with fibroids report missing work because of their symptoms
• 25% reported that having fibroids prevented them from meeting their career potential
• Black women with fibroids are 77% more likely to miss work than their white counterparts
• 36% reduction in work productivity

Dr Williams explained that fibroids also affect self-image with research showing the following:

• 68-88% of women feeling self-conscious or embarrassed about their stomach size and appearance
• 22-51% stated that having fibroids had a negative influence on their femininity and sexuality
• 44% reported painful intercourse
• 60% reported a lack of interest in sex
• 53% said it negatively impacted their relationship with their husband
• 14-46% stated it affected their ability to take care of their home and children

Dr Williams ended her presentation by summarising the significant impact that fibroids have on women and society:

• Fibroids present a significant burden for those affected
• It has an enormous economic impact
• Fibroids negatively affects work productivity, sexuality, self-image, relationships, social and emotional wellbeing
• Black women and younger women are more affected by fibroids
• Many women delay seeking treatment often for several years

Diet and Fibroids

We also heard from Dr Lescott who gave a presentation on diet and fibroids. Similar to Dr Williams, Dr Lescott also explained that there is limited research exploring this topic, but the limited amount  of data on diet and fibroids suggests the following:

• Fibroids are more common in women who consume more red meat and alcohol
• For women who drink at least one beer a day, there was a 50% increase in their risk of developing fibroids
• Compounds from green tea may inhibit the growth of fibroids cells
• Women who consume more citrus fruits are less likely to develop fibroids, possibly due to the presence of flavonoids in citrus fruits
• Vitamin D was protective when it comes to fibroids
• Vitamin A from animal sources are linked to the development of fibroids (not vitamin A from fruits and vegetables)

Living with Fibroids and Chronic Illness

Dr Pereira then covered a very important but often neglected topic – how to live with an ongoing illness like fibroids.

Many women with fibroids are forced to live with several uncomfortable symptoms, in some cases for many years. Dr Pereira explained that this can challenge many aspects of a woman’s life.

Some of the challenges that women may encounter include difficulties related to pain, fatigue, missed work, reproductive health issues, uncertainty, stress, anxiety, relationship and family difficulties, loss of self-confidence, financial issues and more. All these issues can be very hard to cope with.

Because complete eradication of the symptoms and effects of fibroids is not always possible, it is important that women learn strategies to cope. This can be achieved through cognitive behaviour therapy (CBT) which focuses on looking at how we think about certain situations in order to develop resilience so we can better deal with the challenges that are associated with living with fibroids.

Dr Pereira also demonstrated one simple CBT technique, relaxation breathing, which is used to reduce the symptoms of anxiety.

Treatment of Fibroids

We also heard from Dr Lawrence who gave an excellent presentation on the treatment of fibroids. Dr Lawrence explained that treatments included surgery e.g. (hysterectomy, myomectomy), medication to treat the symptoms or shrink the fibroids, non-surgical options (e.g. embolization) and MRI-guided procedures. Dr Lawrence explained that some of these procedures are not available in St Kitts and Nevis.

Dr Lawrence gave attendees the opportunity to ask any questions they had about fibroids, treatment and symptoms. This raised a number of interesting issues such as the challenges associated with having both sickle cell anaemia and anaemia related to fibroids, the struggle that many women have with making treatment decisions and fertility concerns.

My Fibroids Story

In addition to the doctors who presented, we were grateful to Tammy Cook who delivered a powerful and moving talk about her personal experience with fibroids. Ms Cook bravely shared the many challenges she experienced and based on this experienced encouraged women to:

• Get to know their bodies
• Visit the doctor promptly if something doesn’t feel right
• Get a second opinion if you’re not happy with your care.

Conclusion

The event ended with a short presentation from Abi Begho who summarised the day and explained what resources, information and support are available to women which included a self-management course which we’re hoping to organise in May specifically for women with fibroids.

Thank you!

We had a great day and would like to thank everyone who attended, asked questions, and shared their story.

We’d like to thank all the speakers for their thought-provoking, informative presentations and all the vendors – Mother Becky Bush Tea, Sugar Town Organics, Love the Skin You Wear, Pure Niceness By Winnielle and Rose Catering.

We’d also like to say a big thank you to the Chop Shop, the Emerald Mist Spa, Mother Becky Bush Tea, Love the Skin You Wear and Sugar Town Organics for donating lovely raffle prizes.

And, finally we’d like to thank the staff and students UMHS for all their support as we organised this event, we are very grateful.

More Information

For more information on fibroids, you can:

• Visit our fibroids blog and fibroids news sections
• Read through our My Fibroid Story section
• Read through the highlights of our fibroids Twitter chats
• Send a question to our Fibroids Ask the Expert panel
• Listen to our fibroids podcast interviews
  • My Ten Year Journey With Fibroids 
  • Fibroids, Hormones, Diet and Lifestyle
  • The Emotional Impact of Fibroids

You can also keep up-to-date with our fibroids events and news by subscribing to our fibroids newsletter below.

Being a new organisation in St Kitts and Nevis and keen to make a positive contribution to improving the health and wellbeing of our community, over the past year we have been exploring the public health landscape in our Federation and started developing a strategy around the pressing issue of non-communicable diseases (NCDs) with a focus on childhood obesity and women’s health.

In today’s blog, we’ll be discussing our decision to tackle women’s health and in a future blog, we’ll explore childhood obesity.

Our decision to focus on women’s health was an evidence-based decision. Data from the Ministry of Health has demonstrated that women living in the Federation face a number of health challenges.  In St Kitts and Nevis, women are disproportionately affected by some NCDs. For example, 71% of diabetics in St Kitts and Nevis are women and 65% of cancer patients are women.

Non-communicable diseases are a significant issue for St Kitts and Nevis with 83% of deaths being due to these conditions. Driving the rise of non-communicable diseases is the high rate of overweight and obesity. In women, the rates are extremely high. Data has shown that 74% of females in St Kitts and Nevis are either overweight or obese.

We need to tackle these issues in order to improve the health and quality of life of women and prevent them from dying prematurely from diseases that are mostly preventable. Therefore, we are working towards developing a women’s health programme that will initially focus on awareness and education.

Our Plan

Over the next year, our plan is to host a series of women’s health events entitled ‘Girl Talk: Informative, Informal and Empowering Discussions About Women’s Health.’

These events will aim to inform and empower women enabling them to take control of their health and therefore not only improve their own health and wellbeing, but the health and wellbeing of their families, and by extension build a stronger, healthier nation.

The series began on 30^th March 2019 with Girl Talk: Fibroids and following this there will be regular events covering a range of women’s health issues.

Healthcare professionals, particularly female healthcare professionals, will be invited to give engaging presentations on health topics, and women affected by conditions will be invited to share their experience and what they have learnt from it.

Additionally, we will invite health and wellbeing brands (particularly those owned by women) to showcase their services at each event so that women can have easy access to relevant services. We will also invite female medical students to take part in this event giving them relevant real-world experience of women’s health. We are pleased to have formed a partnership with Because We Care at the University of Medicine and Health Sciences to achieve this.

As well as covering the most common NCDs, we need to focus on providing support and information for women in St Kitts who are affected by women’s health issues that tend to be overlooked such as fibroids, endometriosis and PCOS.

Additionally, childhood obesity is another significant challenge with 1 in 3 children in the Caribbean being overweight or obese. In St Kitts, the statistics are more alarming with 46.9% of secondary school children being overweight or obese. Studies have shown that children who are overweight and obese tend to become adults who are overweight or obese, and this puts them at risk of developing NCDs like diabetes, cancer, heart disease and more.  We believe that women can play an instrumental role in tackling childhood obesity by creating a healthy environment for their children, our lecture series will educate mothers on easy, practical ways to do this.

The key objectives of our women’s health event series will be:

1. To raise awareness of and create an understanding of women’s health issues to facilitate early detection and prevention
2. To provide a safe, informal platform where women can come together, receive expert advice and have an honest open discussion about important health issues and therefore reduce isolation, stigma and create a support network for women.
3. To empower women with the information to create a healthy lifestyle for themselves and their families to improve their general health and wellbeing

As mentioned previously our first Girl Talk event was on 30^th March 2019 and we were so pleased with how it went. Look out for a future blog post summarising this event.

We are really excited about our strategy for the next couple of years and hope you’ll follow us on our journey.

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References

1. UNICEF, Situation Analysis of Children in the Federation of St Kitts and Nevis, UNICEF Office for the Eastern Caribbean Area and the Government of St Kitts and Nevis, Christ Church, Barbados, 2017
2. PAHO, Health in the Americas, 2012: St Kitts and Nevis, PAHO, 2012
3.  WHO, Diabetes Country Profile: St Kitts and Nevis, WHO, 2016