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:
We raise awareness and campaign to improve the experience of all women who have been affected by fibroids. We do this by taking part in government consultations, developing awareness campaigns and working in collaboration with our global partners on key issues.
Global Fibroids Campaign 2019
In June 2019, we joined forces with organisations from the Caribbean, UK, US and France to launch a campaign calling for a greater focus on fibroids.
The campaign highlighted 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 called 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 their physical, mental and spiritual wellbeing
The theme for International Women’s Day in 2018 was #PressForProgress and we teamed up with Noire Wellness to #PressForProgress to improve the experience of women with fibroids. Our campaign raised awareness of key changes that are required for progress to be made and we still firmly believe that for progress to be made, we need:
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 fibroids, who have a family history of fibroids or who have 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.
All-Party Parliamentary Group on Women’s Health Fibroid Inquiry
The UK’s All-Party Parliamentary Group on Women’s Health is a cross-party group of MPs and Peers in the Parliament of Westminster. In 2016, they launched an inquiry into whether women are given an informed choice about the treatment options available for fibroids and endometriosis. We were delighted to take part in this inquiry by encouraging black women affected by fibroids to submit written evidence and we attended the oral evidence session and spoke up for black women by raising the challenges that black women face.
You can find out more about the results of the inquiry here
You can keep up-to-date on all our work in this area by signing up to our fibroids mailing list below:
Because fibroids tend to be overlooked, many women who are affected don’t always know who to turn to for support and are left to suffer in silence. We want to change this and are developing our support programme to ensure that no one with fibroids feels isolated and alone.
Here are some of our support services:
Fibroids Ask the Expert
Do you have questions about fibroids? Are you wondering what the risk factors for fibroids are? Are you confused about treatment options? Want to understand natural and holistic approaches to managing fibroids? Our Ask The Expert service is here to help. It gives you the opportunity to get answers to all your questions from experts in the field.
Our experts will empower you with the information that you need to understand this condition and make informed decisions about your journey with fibroids.
This series focuses on fibroids self-care to provide women with practical, useful, empowering information that will allow women with fibroids to take control of their health and live well.
Our series will include webinars focusing on diet, hormones, treatment, exercise and emotional wellbeing. We’re so happy to have experts in the field who’ll be leading interactive and engaging sessions that will allow an in-depth look at their topic of interest.
Find out more and register for our next webinar here
Fibroids Self-Management Course
Have you been affected by fibroids? Are you based in St Kitts and Nevis? Then you can register to attend a self-management course. You’ll learn techniques that will help you to improve your quality of life and mental wellbeing. Topics covered in the course include:
Problem-solving
Dealing with difficult emotions
Action planning
Decision making
Breaking the symptom cycle
And more
To register an interest in this self-management course, please email us or call 668 1518
Sharing personal stories of women with fibroids can be very therapeutic and provide comfort to those who are going through similar experiences. Reading such stories can also be inspirational, provide a realistic view of living with fibroids, be educational and importantly create a community where women no longer feel alone and isolated.
So, we’re collating fibroids stories from a diversity of women, empowering stories that delve into the realities of living with fibroids, how women have overcome any challenges they have faced and the lessons they have learnt along the way.
You can read these stories in our My Fibroids Story page and if you’d like to share your story, please do get in touch with us by email
You can keep up-to-date on all our work in this area by signing up to our fibroids mailing list below:
We organise regular events that provide women affected by fibroids with the opportunity to learn more about the condition, meet other women with fibroids and connect with experts in the field.
Our events fall into three main categories – awareness, education and support – which each have their own distinct focus area.
We host in-person and online events with the aim of reaching as many women as possible.
In the future, we hope to organise events specifically for healthcare professionals such as fibroids study days, conferences and workshops.
Events that we have hosted in the past include:
Fibroid Focus: an educational day for women, based in the UK, who have been affected by fibroids
Girl Talk: Fibroids: an educational day for women, based in St Kitts, who have been affected by fibroids
Fibroids Twitter Chats: a series of conversations with individuals and organisations working in the field to highlight their work and raise awareness of their impact
Fibroids Self-Care Webinar Series: a collection of live webinars and pre-recorded presentations to empower women and provide them with the support and information they need to take control of their health
To register and find out more about our upcoming events, please visit the events section of our website or you can sign up to receive our fibroids newsletter below:
Through our fibroids publications, we aim to provide useful, simple and straightforward information on fibroids. We have produced a fibroids booklet, reviewed by healthcare professionals and women with fibroids; are creating a series of fact sheets on areas that women have highlighted are important to them and have also produced a report summarising a small piece of research we conducted to explore the needs of black women with fibroids.
We conducted some research to understand the experience of African and African-Caribbean women with fibroids. This work explored the needs of women with fibroids and determined if women had access to enough information and support. Our findings then informed the development of our fibroids information and support programme.
Our booklet provides much-needed information on all aspects of fibroids from symptoms and risk factors to treatment and prevention. It aims to ensure that women have accurate, reliable information about fibroids. We hope this booklet will be a one-stop-shop for anyone with questions or concerns about fibroids.
Fibroids and Exercise – in this fact sheet we discuss how exercise may help with alleviating symptoms and provide readers with simple tips on how to get active without aggravating their current symptoms.
Fibroids and Your Emotional Wellbeing:this fact sheet aims to help women identify, understand and address the emotions that may be associated with having fibroids.
Acknowledgements: We’d like to thank Olivia Haltman from OH Counselling Services for co-authoring this fact sheet and Way Wive Wordz Publishing, Editing and Tuition for editing this document.
Infographics
Fibroids and COVID-19: this comprehensive infographic explores how the COVID-19 pandemic may be affecting fibroids patients and provides some self-care and stress management tips to help women cope during this challenging time.
Reviewed by: Dr Oduntan, District Medical Officer, St Kitts and Nevis
You can download a list of the references used to prepare this infographic here
We would like to thank our volunteer, Mariana Ndrio, a second-year medical student at the UMHS in St Kitts and Nevis for her hard work in preparing this resource.
What You Need to Know About Fibroids: This infographic provides an overview of fibroids covering what fibroids are, the different types, risk factors, prevention tips and symptoms.
You can download a list of references used to prepare this infographic here
We would like to thank Dr Sofia Miah, who recently graduated from the University of Exeter Medical School, for her hard work in preparing this infographic.
This infographic was reviewed by a UK-based gynaecologist.
We are committed to making all our resources free and easily accessible to all those who need it. You can help us with this commitment by making a donation which will go towards the costs of producing our health information which includes the costs of design, printing and editing. You can make a donation here. Thank you for any help that you can provide.
Please note that our online payments are being managed by JAD Cash, a comprehensive e-money solution for the Eastern Caribbean countries. All online payments will, therefore, be processed in Eastern Caribbean Dollars (XCD)
