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

On many occasions women with fibroids have asked us to recommend a good, experienced doctor who specialises in fibroids. We tend to point them in the direction of the two doctors on our Ask the Expert panel, Dr Nigel Hacking and Mr Adrian Lower.

Because we get this question a lot we started looking into whether we can put together a resource of highly recommended doctors and consultants in the UK who have expertise in fibroids. Whilst doing this we came across an article on the Mail Online which we thought would be a good start and be useful to our readers.

The Mail Online spoke to 40 leading gynaecologists and interventional radiologists in the UK and asked them: “If your own nearest and dearest were to need fibroid treatment, to whom would you refer them and why?”

Based on the answers provided the Mail Online put together their top ten fibroids experts cautioning that this is a guide, not a scientific study and there are many more highly-skilled consultants throughout the UK.  Their list is below.

Please note this was put together in 2011 and we’ve therefore updated some job titles.

Mail Online’s Top Ten Fibroids Experts (UK)

Mr Ertan Saridogan, Consultant Gynaecologist, University College Hospital, London

What the Mail Online said:

“Has huge expertise with fibroids and is probably the best in the country for keyhole myomectomy. He’s a delicate surgeon who is kind and has great empathy for his patients. As a fertility expert, he takes exquisite care with nearby structures such as the fallopian tubes, so his patients will have the best possible chance of a successful pregnancy.”

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Professor Anna-Maria Belli,  Consultant Radiologist, St George’s Hospital, London

What the Mail Online said:

“Has pushed hard to get embolisation accepted. Technically she’s superb and she’s warm too. Patients love her — she cares about them, takes their views on board and will do all she can to ensure they get the best possible treatment.”

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Professor Issac Manyonda, Consultant Gynaecologist, St George’s Hospital, London

What the Mail Online said:

“A fine gynaecologist and an international figure who has distinguished himself  in the field of open myomectomy for large fibroids, and is one of the lead investigators in a  new major trial comparing  myomectomy with embolisation.  He has treated huge numbers  of patients, which he has  followed up over many years with excellent results. Uteruses after his treatment are beautifully neat!”

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Mr Alfred Cutner, Consultant Gynaecologist, University College Hospital, London

“A highly-skilled laparoscopic gynaecologist, who would be an excellent choice for fibroids. He’s a warm person who’d do his best to tailor the right treatment for each patient.”

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Dr Paul Crowe, Consultant Interventional Radiologist, Birmingham Fibroid Clinic

What the Mail Online said:

“An excellent operator who set up the service in the West  Midlands and does a huge number of fibroid operations that have yielded first-class results. With Paul Crowe, it’s  not just about technical excellence — he is also patient- centred and manages to make them feel they are in the driver’s seat at all times.”

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Mr Adrian Lower, Consultant Gynaecologist and Minimal Access Surgeon, Consulting Rooms, London

What the Mail Online said:

“Sometimes he is described as the king of fibroids. He doesn’t work in the NHS, but does everything excellently. His background is in fertility problems and he will remove even large fibroids superbly by keyhole surgery, so his patients will have an excellent chance of pregnancy. He also has a very good bedside manner.”

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Dr  Anthony Nicholson, Consultant Radiologist, Leeds General Infirmary

What the Mail Online said:

“One of the leaders in interventional radiology, he is charismatic and popular with patients. He can be counted on  to give unbiased advice. He  works closely with gynaecologists and will always refer patients  to them if he thinks the patient will benefit.”

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Dr Woodruff Walker, Consultant Diagnostic and Interventional radiologist, Royal Surrey County Hospital, Guildford 

What the Mail Online said:

“He is undoubtedly one of the pioneers of uterine artery embolisation and has blazed a trail in this country. An acknowledged expert who has done more fibroid embolisation than anyone else, he has achieved outstanding results. Extremely personable, and patients have complete and well-deserved faith in what he does. He won’t push anyone into anything.”

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Dr Nigel Hacking, Consultant Radiologist, Southampton General Hospital 

What the Mail Online said:

“Approachable and has done a lot of work extending the availability of interventional radiology both here and abroad. Highly-skilled with the manual dexterity and hand-eye coordination needed. He knows when to embolise and when he’s done enough. This is vital because you want to starve the fibroid of its blood supply, but not damage the supply to nearby structures.”

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Mr Adam Magos, Consultant Gynaecologist,  Royal Free Hospital, London

What the Mail Online said:

“He has been in the forefront of developing hysteroscopic myomectomy (where the fibroid is removed via the cervix, using a hysteroscope, a narrow, telescopic camera with instruments attached — there are no abdominal cuts). He also collects and appraises his own results and presents these to peers at meetings, and is a keen researcher. This is the sign of a quality surgeon who is interested in what he’s doing and is open to new ideas.”

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The Mail Online also noted these highly recommended experts who didn’t make the top ten:

Mr Andrew Kent, Consultant Gynaecologist  and Minimal Access Surgeon, Royal Surrey  County Hospital, Guildford

What the Mail Online Said:

“Technically a superb keyhole surgeon  in a very high-profile centre,  who operates beautifully. Fibroid patients would be in very safe hands with him.”

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Professor Lesley Regan, Clinical Professor, St. Mary’s  Hospital, London

What the Mail Online said:

“A top gynaecologist with a great  interest in fibroids who would do her best for her patients without forcing her views on them. She would put all the options to each patient fairly and then help them to decide.”

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Professor Jonathan Moss, Professor of Interventional Radiology, Gartnavel  General Hospital, Glasgow

What the Mail Online said:

“An enormously dedicated and highly skilled radiologist of the highest order  and with the right mindset — which is  that all options should be on the table for all women who are needing fibroids treatment.”

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Mr Yacoub Khalaf, Consultant Gynaecologist, Guy’s Hospital, London

What the Mail Online said:

“Has a big fertility practice and will operate on large fibroids by open  surgery, taking meticulous care. A  well-rounded gynaecologist who is totally dedicated to his patients.”

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Professor Tony Watkinson, Consultant Radiologist, Royal Devon  & Exeter Hospital

What the Mail Online said:

“Lovely with patients and gives them choices. He will explain what he  knows about fibroids and the alternatives, too. If they then decide on embolisation, he will look after them very well.”

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Mr George Pandis,  Consultant Obstetrician and  Gynaecologist, University College  Hospital, London

What the Mail Online said:

“Being a very good gynaecologist is  about much more than how good  you are with a scalpel and telescope.  It is also about how kind you are  and how good you are if things happen to go wrong. He ticks all of these boxes, taking excellent care of his patients.”

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We hope you’ve found the above list helpful and we thank the Mail Online for compiling this list.  You can read their original article here

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.

We are delighted to announce our next fibroids Twitter chat will be on  Wednesday  29th  November 2017 from 7pm-8pm (UK time). We will be joined by special guest Imani Sorhaindo with host, our own Abi Begho, founder of The Lake Foundation.

Imani Sorhaindo is a teacher, Curriculum Manager, Life Coach and Facilitator of the Ipswich Black Sisters Fibroid and Womb-Wellness Support Group.

Imani has been working as a community development worker for the upliftment of the African community for over 28 years.

Imani has her own personal life experience of working towards shrinking fibroids, and eradicating stress and toxicity through a range of life-changing techniques and lifestyle living including breathing, meditation and energy balancing.

Over the past 13 years she has been researching the world of women’s health; particularly around fibroids and healing. The Black sister’s fibroid group which she runs in Suffolk has been running for its first year; with pleasing results. She has recently delivered a short lecture at the Black History Walks Nzingha Lectures in London.

Imani is also half-way through writing her book around the theme ‘Holistic approaches towards the elimination of fibroids. In 2018, Imani will be hosting her first Fibroids conference in the Caribbean island of Dominica.

This Twitter chat has been organised to allow for an in-depth discussion with Imani on her personal experience with fibroids, her work facilitating the Ipswich Black Sisters Fibroids and Womb-Wellness Support Group, her upcoming book on holistic approaches to fibroids and her first fibroids conference in Dominica.

We’ll be putting questions to Imani 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.

We look forward to tweeting with you!