Wednesday 18th April 2018

Welcome to episode 10 of our podcast where we reflect on the effectiveness of fitness parties in getting people fit and active.

Wednesday 11th April, 2018

We share three interesting health news stories and pick out an interesting theme that connects them all which we can all learn from.

Today we tackle a question that we are asked quite regularly at our fibroids events: ‘Is there a link between fibroids and endometriosis?’

To answer this question, we’re going to look at what research tells us, but first let’s start with a bit of background on endometriosis. You can find out about fibroids on our fibroids page here

What is Endometriosis?

Endometriosis occurs when cells similar to those that line a woman’s womb are found in other parts of the body like the ovaries, fallopian tubes, bladder and stomach. The problem with this is that the cells that line the womb have a specific function which is only appropriate in the womb. The cells that line the womb build up, break down and bleed every month during our period. In the womb the blood has an escape route (the vagina), but in endometriosis the blood from the womb-like cells don’t have an escape route, and this can cause pain, inflammation and scarring.

Endometriosis is a long-term condition that affects millions of women worldwide causing a range of symptoms, such as heavy and painful periods, back pain, constipation, infertility and more. Thus, it has a significant impact on a woman’s quality of life.

Is there a link between fibroids and endometriosis?

When we look at research that has been conducted in this area, there does seem to be a link between fibroids and endometriosis. Firstly, several studies have found that many women with fibroids also have endometriosis, but just how common it is to have both fibroids and endometriosis isn’t clear as it has varied between studies. For example, a study carried out in the US by a team in Stanford in 2010 found that 86% of patients with fibroids also had endometriosis, whilst in 1994 a team in Italy found that just 12% of women with fibroids had endometriosis. Furthermore, three other studies found that 87%, 21% and 28% of women with fibroids also had endometriosis.  So, it does vary from there being a very strong link (87%) to a relatively weak, but significant link (12%).

When we look at the biology of fibroids and endometriosis there is evidence of a link between these two conditions. It has been reported that fibroids and endometriosis have common biological abnormalities that contribute to the development of both conditions. Namely these are defects in molecules called 17B-hydroxysteroid dehydrogenase (involved in hormone regulation) and aromatase (involved in the production of oestrogen). Related to this it is thought that women with fibroids and/or endometriosis tend to have a hormone imbalance having excess amounts of oestrogen in the body which, in both conditions, causes growth of the abnormal cells.

Why is it important to know about this link?

It’s important for patients and doctors to be aware of the link between fibroids and endometriosis so patients can receive the most appropriate treatment. If there is no awareness that women with fibroids are likely to also have endometriosis, patients diagnosed fibroids will be treated for just their fibroids and their symptoms may persist which the doctor and patient may think is due to the treatment being ineffective, but the persistent symptoms could be due to undiagnosed endometriosis. Researchers from the Stanford Study therefore recommend that doctors explore whether their fibroids patients also have endometriosis. Their study did identify helpful clues to identify whether a patient with fibroids may have endometriosis. They found that women who were diagnosed fibroids were more likely to have endometriosis if they:

• Had pelvic pain that was disproportionate to the size of their fibroids
• Were infertile

Therefore a good starting point for doctors and patients wanting to explain persistent symptoms after fibroids treatment is to explore whether the two symptoms above are present as this could mean the patient has endometriosis. If we can pinpoint these patients early then steps can be taken to alleviate their symptoms and thus improve their quality of life.

More Information

For more information about endometriosis you can visit Endometriosis UK’s website and for more information about the link between fibroids and endometriosis you can check out the references below.

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References

1. Huang J.  et al. (2010). Coexistence of endometriosis in women with symptomatic leiomyomas. Fertil Steril, Volume 94(2), p 720.
2. Nezhat C. et al. (2016). Strong Association Between Endometriosis and Symptomatic Leiomyomas. JSLS, Volume 20 (3).
3. Maclaran K., Agarwal N. and Odejinmi. (2014). Co-existence of uterine myomas and endometriosis in women undergoing myomectomy: risk factors and surgical implications. J Minim Invasive Gynecol, Volume 21 (6), p 1086.
4. Tanmahasamut P., Noothong S., Sanga–Areekul N., Silprasit K. and Dangrat C. (2014). Prevalence of endometriosis in women undergoing surgery for benign gynecologic diseases. J Med Assoc Thai, Volume 97 (2), p147.

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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:

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

You can read more about the campaign here

International Women’s Day 2018 Fibroids Campaign

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:

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.

You can submit your questions here

Fibroids Self-Care Webinar Series

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

My Fibroids Story

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

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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
• Community-based presentations: a short awareness presentation aimed at creating awareness of 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.

Booklets and Reports

Understanding the Needs of 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.

You can read our report here.

Publication date:  21st January 2015

Redesign: July 2019

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Fibroids Booklet

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.

You can read the booklet here.

Publication date: 29th July 2015

Our booklet will be updated in 2020

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Fact Sheets

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.

Updated: March 2019

Download here:  Fibroids and Exercise Fact Sheet

Acknowledgements: We’d like to thank Candice Bryan from Noire Wellness for contributing to this fact sheet and Way Wive Wordz Publishing, Editing and Tuition.

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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.

Updated: April 2019

Download here:  Fibroids and Your Emotional Wellbeing

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.

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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.

Published: 18th May 2020

Download here: Fibroids and COVID-19 Infographic

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.

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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.

Published: 1st June 2020

Download here: What You Need to Know About Fibroids

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.

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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)

Wednesday 4th April, 2018

Today, we touch on the Healthy Caribbean Coalition’s new childhood obesity prevention campaign, why this campaign is important, what policies the HCC is encouraging governments in the Caribbean to introduce to tackle childhood obesity and how you can get involved.

We recently came across this really useful ‘Know Your Flow’ infographic created by Be Prepared.Period. It provides really clear information to help you understand what is normal with regards to your period.

For women with fibroids this infographic may be useful  in assisting you when you’re having a conversation with your doctor during your follow-up appointments.  Using the information provided in this infographic you can describe how heavy your period is and explore with your doctor whether the colour of your period is cause for concern.  This may help your doctor understand whether your symptoms are getting better and whether a particular treatment has been effective.

Check out the infographic below and let us know in the comments section below whether you found this useful or not, and you can find out more about Be Prepared. Period on their website here

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