Have you been diagnosed with fibroids? Are you considering treatment options, or have you recently received treatment for fibroids? Then the fibroids patient support group at Guy’s and St Thomas’ Hospital may be of interest to you.

Living with fibroids and being asked to make a decision around surgical options can be emotional and difficult for both you and your loved ones. So, Transforming Outcomes and Health Economics Through Imaging (TOHETI) organise regular fibroids support sessions that  provide a safe, informal setting for  patients to meet other women and share their questions and concerns, both before and after surgery. All are welcome to attend, you do not need to be a patient of Guy’s and St Thomas’.

The next session will be on Monday 23rd January, 6:00 – 7:30pm at the  McNair Centre, Guy’s Hospital. Refreshments will be provided.

This next session will  include a presentation from Dr Irfan Ahmed, Consultant Interventional Radiologist, Guy’s and St Thomas’. Dr Ahmed will talk more about a minimally invasive procedure he performs called uterine artery embolization, and answer any questions you may have.

For more information and to book a place at this session please, email fibroids@kcl.ac.uk or just turn up on the evening!

 

The All-Party Parliamentary Group on Women’s Health is a cross-party group of MPs and Peers in the UK Parliament of Westminster. The group aims to empower women to ensure that they can make an informed choice about the best treatment for them and that they are treated with dignity and respect.

The group has launched an inquiry into whether women are given informed choice about the treatment options available for particular conditions. They aim to publish a report that will assess their findings around informed choice and provide recommendations on the improvements that need to be made.

Fibroids is a condition that they would like to shine the spotlight on and they would like to hear from women about their experience of living with and accessing treatment for fibroids. They are asking women with experience of fibroids to complete a survey which you can find here: https://www.surveymonkey.co.uk/r/fibroids-informed-choice

If you’ve been affected by fibroids we strongly encourage you to complete the survey so that any issues that exist can be identified and addressed to ensure that the diagnosis and treatment pathway for all women is improved.

If you have any questions about the survey or about the work of the All-Party Parliamentary Group on Women’s Health please  email  appgwh@pbpoliticalconsulting.com or call 020 7735 6963

If you would like help completing the survey, please get in touch with The Lake Foundation by emailing us

We are delighted to announce that Noire Wellness has selected The Lake Foundation as its charity of the year.  This means that over the next 12 months Noire Wellness will aim to raise £2000 for our charity. One of the ways that they will achieve this is through their Fibroids Wing Walk in June 2017!

On 17^th June 2017, representatives from Noire Wellness, including their very brave founder, Candice Bryan, will take to the skies with this daring fundraiser to experience the thrill of a wing walk thousands of feet up in the air (wow!), all for a good cause.

All the money raised by Noire Wellness will go towards our work to continue to develop a fibroids awareness, information and support programme.  Specifically we hope to develop an engaging, interactive, digital information hub, expand our outreach work and create a  support programme for women affected by fibroids.

You can support Noire Wellness in this wonderful fundraising activity by:

• Making a donation on their Go Fund Me page
• Sharing their Go Fund Me page with your contacts and asking them to make a donation
• Or, if you are brave enough, you could also take part in the Wing Walk! Email us for more information.

About Noire Wellness

Noire Wellness is an organisation that aims to improve the health and wellness of the African and African-Caribbean community through the offer of local wellness clubs, community consultancy services and a newly created network of professionals.

Currently Noire Wellness is running a 12-week pop-up club which started on 1^st August and will run until 24^th October. The pop-up club sessions are a health and fitness club, spa lounge and workshop zone all rolled into one. It features the talents of wellness professionals who have been inspired by the traditions of Africa and the Caribbean to deliver fitness, rejuvenation and nutrition services.

The next pop-up session will be on Thursday 13^th October from  7pm -9pm and will start with a one hour Afrikan Yoga (Goddess Edition) session followed by a fibroids awareness presentation delivered by The Lake Foundation’s founder, Abi Begho.  For more information and to book a place please click here

Find Out More About Noire Wellness

You can find out more about Noire Wellness by following them on Twitter, liking their page on Facebook or signing up to their newsletter here

The Lake Foundation is delighted to invite you to attend its event ‘Fibroid Focus’ where we will be focusing on the treatment of fibroids. At this event you will hear from experts in the field discussing all treatment options including natural ways of managing the symptoms of fibroids.

Speaking at this event will be Mr Rajiv Varma, a consultant gynaecologist, who will be provide an overview of the treatment options available on the NHS, their pros and cons and what steps to take to ensure you’re getting the best treatment possible. You will also hear from Leah Salmon, The Naturally You Coach, who will outline the impact of diet on fibroids and how a healthy diet can reduce your risk and help in the treatment and prevention of fibroids. Lillian Lartey will discuss the power of exercise in preventing and managing the symptoms of fibroids, Olivia Haltman will look at a sometimes forgotten area for fibroids patients, how to manage the psychological impact and Patricia Ferguson will discuss the use of herbal remedies in treating the symptoms of fibroids.

Additionally we’ll have some great organisations exhibiting on the day so you can find out more about women’s health in general.

Join us on 30th July 2016 for an informative, empowering session. Book early to avoid disappointment, spaces are limited.

Doors open at 12pm and you can visit the information tables; the presentations start at 1pm.

For more information and to book your place, please click here

A new study published this week suggests that women with high levels of both oestrogen and testosterone at midlife are at a higher risk of developing fibroids than women with low levels of hormones. This finding is important because this is the first time that testosterone has been linked to fibroids.

In this study 1412 women aged 45 -52 were monitored over 13 years with each woman having an annual check-up where their hormone levels were measured. It was found that women with high levels of testosterone in their blood were 1.33 times more likely to develop fibroids than women with low levels of testosterone, and women with high levels of both oestrogen and testosterone had an even greater risk , they were 1.5 times more likely to develop fibroids.

Dr Jennifer Lee, one of the researchers explained the importance of these findings by stating that:

“The research opens up new lines of inquiry regarding how fibroids develop and how they are treated. Given that managing uterine fibroids costs an estimated $34.4 billion in annual medical expenditures nationwide, it is important to identify new ways to better treat this common condition.”

You can read more about this research here

Last year, Cynthia Bailey from the popular American reality TV show, The Real Housewives of Atlanta, announced that she had fibroids.

Cynthia revealed that her fibroids caused chronic weight gain,  chronic fatigue and loss of sex drive. She stated that she didn’t understand why she was gaining weight and felt so unwell and visited her doctor who found that she had fibroids. She later had surgery to have them removed and said:

“I’m feeling much better! The surgery was the best thing I ever did! My only regret was I didn’t do it sooner.”

Cynthia also described the negative impact her symptoms had on her marriage but said that her experience with fibroids motivated her to adopt a healthy lifestyle.

We applaud Cynthia Bailey for speaking out about her fibroids and raising awareness of the impact fibroids can have not just with respect to the physical symptoms but its wide reaching effect on daily life.

Today, The Lake Foundation formally published the findings from its fibroids survey.

Our fibroids survey was launched last summer and we invited women with experience of fibroids to take part. The aim of the survey was to understand the needs of women with fibroids to inform the development of our fibroids information and support programme.

We explored five main areas and our key findings are as follows:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis.
• There was a good level of awareness of some of the main symptoms of fibroids but a low level of awareness of other symptoms.
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors.

Route to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms.
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated that it took 12 months or more to receive a confirmed diagnosis.

Treatment

• Despite the fact that 79% of participants had a discussion with their GP about treatment options, 63% stated that they didn’t feel that they had enough information to make an informed decision about their treatment.
• The majority of participants (42%) had surgery to treat their fibroids.
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally.
• Many participants did not feel like they had enough support to assist them in managing or overcoming the emotional, physical and medical impact of fibroids.

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support.

In 2015 we will work towards addressing these issues and have started this with our Fibroids Ask The Expert which was launched at the end of last year.

For more information on the findings of our survey please download our report below.