Global Fibroids Campaign 2019

Organisations from the Caribbean, US and UK, including Lake Health and Wellbeing based in St Kitts, 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/s 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

What Are the Symptoms of Fibroids?

Many women with fibroids do not experience symptoms but an estimated 30% will experience symptoms that can be severe and significantly affect a woman’s quality of life. These symptoms include:

Painful periods
Heavy Periods
Prolonged periods
Anaemia (which can result in tiredness, dizziness, weakness and headaches)
Abdominal (tummy) pain
An enlarged abdomen
Bloating
Constipation
Needing to pass urine more frequently
Pain, discomfort or bleeding during sex
Fertility challenges

If you have any of these symptoms, we highly recommend that you visit your doctor to explore whether you may have fibroids. Being diagnosed promptly allows you to receive appropriate treatment so you can avoid fibroids significantly affecting your quality of life.

It’s important to note that other conditions may have similar symptoms to fibroids. These include:

Endometriosis
Adenomyosis
Polyps
Polycystic Ovary Syndrome
Endometritis

What Treatments Are Available?

There are a number of treatment options when it comes to fibroids. These include:

Watchful waiting – a woman may not realise she has fibroids until her doctor detects them after a routine examination therefore, she may have no symptoms or very minor symptoms. In this situation her doctor may recommend watchful waiting which may involve:

1. Keeping an eye on her symptoms and if they get worse or new symptoms develop, informing her doctor
2. Being regularly monitored by her doctor. This may involve yearly ultrasound scans to keep an eye on the size of the fibroids.

During the watchful waiting period, we recommend that women adopt a healthy lifestyle by eating a healthy diet, exercising and reducing their stress levels. Specifically, women can try eating less red meat, cutting out alcohol and caffeine, eating more vegetables particularly green leafy vegetables and ensuring they have sufficient levels of vitamin D

Medications to manage symptoms such as pain and heavy menstrual bleeding – women may be given anti-inflammatory medicines for pain, tranexamic acid for bleeding and hormonal treatments, like the contraceptive pill, to help regulate their periods

Surgical and Non-Surgical Options are utilised to either remove or shrink fibroids. These options include:

Hysteroscopic resection – where a small device with a camera and a light at the end of it is used to remove the fibroid

Myomectomy – can be used to remove fibroids whilst keeping the womb intact

Hysterectomy – removal of the womb

Endometrial ablation – used to address heavy menstrual bleeding and to remove small fibroids (less than 5cm) that are growing on the lining of the womb. In this procedure, the lining of the womb is removed

Embolisation – this procedure blocks the blood vessels to the fibroids, starving them of oxygen and causing them to shrink

MRI treatments (e.g. MRI-guided percutaneous laser ablation and MRI-guided transcutaneous focused ultrasound) – use MRI to shrink or destroy fibroids

Complementary and Alternative Options may alleviate some of the symptoms of fibroids. For example, strategies for pain management like physical activity, relaxation, imagery, visualisation, distraction and positive thinking can be useful. Additionally, research has demonstrated that women with fibroids have found other complementary options such as dietary changes, acupuncture, physical therapy and herbs contributed to alleviating their symptoms.

What Can Women Do?

If you have fibroids, think you have fibroids or are caring for someone with fibroids we encourage you to take steps to improve your physical, mental and spiritual wellbeing by:

Visiting your doctor or healthcare professional promptly if you have any symptoms, if your symptoms are getting worse or if you’re concerned about your treatment
Making sure you have all the information that you need to make informed decisions about your treatment and health
Getting the support you need whether that be emotional, practical and medical
Eating a healthy diet which may help improve your overall health
Doing more exercise and physical activity which may help alleviate some symptoms and improve your mental and physical health
Taking care of your mental health as living with fibroids can be challenging and impact your wellbeing. Find out more about the emotional impact of fibroids here
Improving your environmental health by ensuring your home, work and social environment are safe, stress-free and healthy

About Fibroids

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.”

About this Campaign

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 that women receive.

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

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

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

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

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

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

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

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

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

References

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
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.
Lake Health and Wellbeing (formerly known as The Lake Foundation), (2014). Understanding the Needs of Women With Fibroids.
Wise, L. and Laughlin-Tommaso, S. (2016). Epidemiology of Uterine Fibroids. Clinical Obstetrics and Gynecology, 59(1), pp.2-24.
Radmila S., et al. (2016). Epidemiology of Uterine Myomas: A Review. Int J Fertil Steril, Volume 9 (4), pp. 424.
All-Party Parliamentary Group of Women’s Health, (2017). Informed Choice? Giving Women Control of Their Healthcare.