We’re so delighted to announce that our March Fibroids Twitter Chat will be with the Fibroid Forum UK on 14th March  at 3pm, AST (that’s 3pm EST and 7pm GMT).

We’ll be discussing all the great work that the Fibroid Forum UK have been doing to raise awareness and provide support to women who have been affected by fibroids.

Fibroid Forum UK is a Registered Charity Number 1177878 formed by women with experience of fibroids. The aim of the Forum is to provide information and create a support network through events, social media and a support group at Guys & St Thomas’ Hospital.

The Forum has contributed to the UK Government’s All Party Parliamentary Group (APPG) on Women’s Health and the report published in March 2017 which focussed on endometriosis and fibroids. Like the APPG the Forum’s aims to empower women to ensure that they can make an informed choice about the best treatment options for their fibroids

The Fibroid Forum has a private Facebook group which you can access here: https://www.facebook.com/groups/1294778417257709/  and they host a regular support group at St Thomas’ Hospital in London.

To take part in the conversation please use the hashtag #FibroidsChat.

We look forward to tweeting with you on the day!

On 9^th February the Medicines and Healthcare Products Regulatory Agency (MHRA ) released a set of temporary safety recommendations, for healthcare professionals, on the fibroids drug ESMYA. This action was taken by the MHRA following reports of serious liver injury in four women taking ESMYA.

The MHRA have made the following recommendations:

• Do not initiate new treatment courses of EMYA, including in women who have completed one or more treatment courses previously.
• Perform liver function tests at least once a month in all women currently taking ESMYA. Stop ESMYA treatment in any woman who develops transaminase levels more than 2 times the upper limit of normal, closely monitor and refer for specialist hepatology evaluation as clinically indicated. Liver function tests should be repeated in all women 2 to 4 weeks after stopping treatment.
• Check transaminase levels immediately in current or recent users of ESMYA who present with signs or symptoms suggestive of liver injury (such as nausea, vomiting, malaise, right hypochondrial pain, anorexia, asthenia, jaundice). If transaminase levels are more than 2 times the upper limit of normal, stop treatment, closely monitor and refer for specialist hepatology evaluation as clinically indicated.
• Advise women using ESMYA on the signs and symptoms of liver injury.

They noted that there have been no reports of liver injury with ellaOne, a emergency contraceptive pill, which contains ESMYA. Therefore, there are no safety alerts for this medicine.

Currently the European Medicines Agency (EMA)  are currently conducting a review of EMSYA and will provide an update in the near future.

What is ESMYA?

ESMYA is a prescription drug that was first authorised in the EU for use in patients with fibroids in 2012. It is used to treat moderate to severe symptoms of fibroids and works by stopping the hormone progesterone from stimulating the growth of fibroids and this reduces their size.  It was initially licensed to be used before surgery to shrink fibroids but can now also be used as a stand-alone treatment. It should only be used for up to three months at a time.  The use of ESMYA can be repeated but there should be breaks between each 3-month course of treatment.

The most common side effects of ESMYA are the absence of a woman’s period and thickening of the lining of the womb. You can speak to your doctor about what all the side effects are and these will be listed in the drug leaflet which comes with ESMYA.

ESMYA must not be used by women who are pregnant or breastfeeding, have vaginal bleeding or have womb, cervical, ovarian or breast cancer. You can speak to your doctor about other restrictions or these will be listed on the drug information leaflet.

For Information

For more information you can download the EMA’s information sheet for healthcare professionals and the MHRA’s full letter issued to healthcare professionals below.

 

We’re so delighted to announce that our first Fibroids Twitter Chat of the year is with Laterria Patton on 21st February  at 5pm, AST (that’s 1pm PST, 4pm EST and 9pm GMT)

Laterria Patton is a Self Care Activist who writes a food blog that promotes reproductive health to black women. The blog content utilizes natural self-healing food practices to educate black women who are suffering with reproductive health problems about the hormonal process and how to keep it in balance.

She is passionate about eliminating the obstacles that contribute to the epidemic of reproductive health disorders amongst black women such as an absence of nutrition-based literature that specifically caters to their cultural needs and preferences, not having access to fresh toxic-free fruits and vegetables,  doctors who discourage  natural healing practices and a lack of understanding and support from their family unit.

Laterria is on a mission to create a world where there is a tremendous improvement in the outcomes and costs associated with breast, ovarian, uterine and vaginal ailments amongst black women because she believes that healthy eating, hormonal balance and reproductive health should be a positive, simple and stress-free experience for all women.

Join us for a chat with Laterria Patton about the common challenges that contribute to uterine disorders (like fibroids), how these challenges can be overcome and how women can achieve optimal uterine health through self-healing food practices.

We’ll be putting questions to Laterria and you can put your questions to her too. So if you have a burning question about uterine health or just want to get involved in the discussion then do join us on the day. To take part in the conversation please use the hashtag #FibroidsChat.

For more information on Laterria, please visit her blog  www.medium.com/@laterriapatton or follow her on social media

Twitter:  www.twitter.com/selfcareandfood

Facebook: www.fb.me/selfcareandfood

Instagram:  www.instagram.com/laterriapatton/

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

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

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

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

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

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

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

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

 What Does This Mean for Women with Fibroids?

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

Researchers from Johns Hopkins University and Meharry Medical College have published the results of their research study exploring the link between Central Centrifugal Cicatricial Alopecia (CCCA) and fibroids. They found that black women with CCCA were nearly five times more likely to develop fibroids compared to those without CCCA.

What is CCCA?

CCCA is a type of hair loss that mostly affects black women. It is characterised by gradual hair loss in the centre of the scalp and it radiates outwards in a circle.  CCCA starts with damage of the hair follicles which leads to scarring and then permanent hair loss.

Historically, CCCA was known as hot comb alopecia as it was initially thought that it was caused by  use of the hot comb as well as relaxers, tight weaves and other practices that may put pressure on our hair and scalp. It is now thought to be caused by a combination of factors as some cases of CCCA are not linked to hair care practices.  Therefore the exact cause of CCCA is unknown but it is thought to be associated with family history (it may run in families) as well as hair care practices.

Exploring the link between CCCA and fibroids

In this current piece of work researchers recognised that women of African descent are more likely to develop disorders such as fibroids, keloids, CCCA and sarcoidosis which all involve abnormal growth of fibrous tissue. Based on these observations they decided to explore whether a link exists between CCCA and fibroids.

To explore whether a link exists they analysed patient data from a four year period (2013-2017).  They extracted data from 487,104 black women who were patients at Johns Hopkins Hospital and  found that 447 of these patients had CCCA (0.09% of patients) and 486,657 didn’t have CCCA.

They then compared the percentage of women with CCCA that had fibroids with that of women who didn’t have CCCA and found that 13.9% of women with CCCA had fibroids ( that is: 62 of the 447 with CCCA) and only 3.3% of women without CCCA had fibroids (that is: 16,212 of the 486,657 without CCCA)

What does this mean?

This means that, in this study, women with CCCA were 4.68 times more likely to have fibroids than women who didn’t have CCCA.

The researchers concluded that there is a strong  association between fibroids and CCCA but:

“The cause of the link between the two conditions remains unclear.”

In their paper they state that:

 “This risk may be due to similar underlying mechanisms in the pathogenesis of both conditions.”

They also cautioned that this data may not reflect the actual association between the two conditions in a real-world setting, so more work will be needed to confirm the association between CCCA and fibroids, and why this association exists.

They do recommend that patients and doctors are made aware of the link so that women with CCCA can be  screened for fibroids and other disorders related to excess fibrous tissue. This will aid early diagnosis and provide the opportunity to control these conditions preventing the development of severe symptoms.

For more information you can download their research summary below

The Health Services Authority in the Cayman Islands announced on 18^th December 2017 that fibroid embolization will now be available in the Caribbean territory at the Cayman Islands Hospital on Grand Cayman.

This is a great step forward for the islands as it means that patients will no longer need to travel overseas to receive this procedure.

Embolization, or Uterine Artery Embolization (UAE), is a procedure that blocks the blood vessels (uterine arteries) to the fibroids, starving them of oxygen and therefore causing them to shrink.  This procedure is carried out by an interventional radiologist who makes a small cut in the groin area and then inserts a tube (catheter) through the cut, using live x-ray images on a monitor to guide the tube into the uterine arteries. Tiny plastic beads (the size of fine sand particles) are then injected into the artery supplying the fibroid and these tiny particles block the artery.  Over the next few hours, the fibroids ‘die’ and then shrink over the next few months and years.

Complications from embolization are rare and tend to be fairly minor, for example: bruising, pain, fever and vaginal discharge.

The benefits of this procedure are it preserves fertility and it is minimally invasive so there are fewer complications than major surgery and a faster recovery time.

This announcement means that women in the Cayman Islands who are affected by fibroids have more treatment options.

Find out more about the Cayman Islands Health Authority here

We are absolutely delighted to welcome Candice Bryan to our fibroids Ask the Expert Panel. With over 20 years experience in the field of sport and wellness, Ms Bryan will provide her expertise to  those who have questions on how exercise can be utilised for the prevention and management of fibroids.

Candice Bryan is the founder of Noire Wellness which seeks to improve the health and wellness of African and African Caribbean communities living in the UK.  In 2017, she launched the #FibroidSeries wellness hub providing women with informative and engaging physical activity workshops and live demonstrations as a holistic approach to managing the effects of fibroids.

She is a thought-leader and speaker on a variety of topics related to sport development, inclusive fitness and wellness diversity.  She draws her fitness experience from over 20 years working across the sector including the management of a multi-award winning disability fitness project where she supported over 120 disabled people to become qualified fitness instructors.

As a dedicated researcher in the field of sport and wellness and the current chair of Active Harrow, Candice oversees the implementation of their physical activity and sports strategy and delivery of action plans.  More recently Candice has joined the I.D Radio team as their first wellness presenter hosting weekly shows to connect with audiences across the globe inspiring desires to be well.

We’re delighted to have Ms Bryan on board and if you have any questions on fibroids and exercise please do submit them here, and for more information on Candice and Noire Welllness, please visit www.noirewellness.com or follow her on twitter @KandiceBryan

The European Medicines Agency (EMA) has announced that it is has started a review on the medicine ESMYA (ulipristal acetate). This drug is used to treat fibroids and the review was initiated following four reports of serious liver injury, three of these patients had to have a liver transplant.  An initial assessment of these cases was conducted and it was determined that ESMYA was the cause of the liver damage.  A more comprehensive and in-depth review will now be carried out.

The EMA has advised that women currently on ESMYA should speak to their doctor if they have any questions or concerns.

What is ESMYA?

ESMYA is a prescription drug that was first authorised in the EU for use in patients with fibroids in 2012. It is used to treat moderate to severe symptoms of fibroids and works by stopping the hormone progesterone from stimulating the growth of fibroids and this reduces their size.  It was initially licensed to be used before surgery to shrink fibroids, but can now also be used as a stand-alone treatment. It should only be used for up to three months at a time.  The use of ESMYA can be repeated but there should be breaks between each 3-month course of treatment.

The most common side effects of ESMYA are the absence of a woman’s period and thickening of the lining of the womb. You can speak to your doctor about what all the side effects are and these will be listed in the drug leaflet which comes with ESMYA.

ESMYA must not be used  by women who are pregnant or breastfeeding, have vaginal bleeding or have womb, cervical, ovarian or breast cancer. You can speak to your doctor about other restrictions or these will be listed on the drug information leaflet.

More Information

More information about the assessment can be found in the information sheet below and you can visit the EMA’s website for more information.

We’re so delighted to announce that our next fibroids Twitter chat will be with Candice Bryan on 13th December from 9pm to 10pm (UK time)

Candice Bryan is the founder of Noire Wellness which seeks to improve the health and wellness of African and African Caribbean communities living in the UK.  In 2017, she launched the #FibroidSeries wellness hub providing women with informative and engaging physical activity workshops and live demonstrations as a holistic approach to managing the effects of fibroids.

She is a thought-leader and speaker on a variety of topics related to sport development, inclusive fitness and wellness diversity.  She draws her fitness experience from over 20 years working across the sector including the management of a multi-award winning disability fitness project where she supported over 120 disabled people to become qualified fitness instructors.

As a dedicated researcher in the field of sport and wellness and the current chair of Active Harrow, Candice oversees the implementation of their physical activity and sports strategy and delivery of action plans.  More recently Candice has joined the I.D Radio team as their first wellness presenter hosting weekly shows to connect with audiences across the globe inspiring desires to be well.

This Twitter chat has been organised to allow for an in-depth discussion with Candice to highlight the great work her organisation is doing with their holistic approach to fibroids. We’ll be discussing Noire Wellness’ recent fibroids wellness hub, what she learnt from this innovative event and their future plans for supporting women with fibroids.

We’ll be putting questions to Candice and you can put your questions to her too. So if you have a burning question about fibroids or just want to get involved in the discussion then do join us on the day. To take part in the conversation please use the hashtag #FibroidsChat.

For more information on Candice and Noire Welllness, please  visit www.noirewellness.com or follow her on twitter @KandiceBryan

The Caribbean Tourism Organisation has declared 2018 as the Year of Wellness and Rejuvenation in the Caribbean. With this in mind The Lake Foundation in collaboration with Noire Wellness are exploring organising a fibroids wellness retreat and we would be grateful if you could complete the following survey.

This survey will help us understand if there is a need and interest in this type of event.  We want to determine whether this type of event would be a useful form of support for women affected by fibroids.

Any and all feedback is welcome and we would be very grateful if you could share this survey with anybody that you think would have an interest in this event.

Create your own user feedback survey