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Fibroids

Category: Fibroids

A Summary of This Week’s Fibroids Twitter Chat with Dr Sydney Dillard
BlogFibroids Twitter Chats
May 5, 2017

A Summary of This Week’s Fibroids Twitter Chat with Dr Sydney Dillard

On Wednesday,  we were so excited to host our third fibroids Twitter chat. We were joined by special guest Dr Sydney Dillard, CEO of Fighting Fibroids to discuss the symptoms and diagnosis of fibroids.  If you missed it you can check out our conversation below.

By admin
APPG Publishes Report on Fibroids and Informed Choice
BlogFibroidsWomen's Health
March 31, 2017

APPG Publishes Report on Fibroids and Informed Choice

We were so delighted when we received an email from the All-Party Parliamentary Group on Women’s Health a few months ago telling us that they would be carrying out an inquiry into informed choice and fibroids and endometriosis,  two of the most common conditions affecting women.

The aim of the inquiry was to explore whether women with fibroids and endometriosis are given an informed choice about the treatment options available and to outline what improvements need to be made.

In order to assess this issue the APPG on Women’s Health consulted with women affected by these conditions as well as healthcare professionals. This was done through a survey, written evidence submissions, an oral evidence session and freedom of information requests to all 139 hospital trusts in the UK.

The Lake Foundation started working on providing information and support to women with fibroids about two years ago following our own survey which found that more needed to be done to ensure women had enough information and support to manage their condition. We published a fibroids booklet, formed an Ask the Expert panel and hosted our first fibroids conference for women affected by fibroids. So for us the APPG’s inquiry was a breath of fresh air as it finally put a national spotlight on fibroids and in doing so enabled the challenges that women with fibroids experience to be raised at the highest level possible, in parliament, and we hope that this will bring about real change.

Results from the Inquiry

The inquiry has now come to an end and this week the APPG on Women’s Health published their report and, like the results of our survey, their report makes for grim reading. Nothing has changed.

Over 2,600 women with fibroids (237) and endometriosis (2,367) completed their survey and:

  • 62% said they were not happy with the treatment choices
  • 42% said they were not treated with dignity and respect
  • 67% said they first found information about their condition from the internet

Looking at just the answers that related to fibroids, 70% of women were told about a hysterectomy suggesting that women are pushed towards this treatment option when many other options are available.  Over 20% of women with fibroids felt the need to get a second opinion and 34% of women were not satisfied with their treatment.

Additionally, over 40% of women with fibroid were not told about the short-term complications of their treatment and over 50% weren’t told about the long-term complications.

The inquiry also identified a number of barriers that prevent women from receiving the best care possible. These included:

  • Lack of public awareness
  • Lack of understanding of these conditions by GPs
  • Common myths about fibroids and endometriosis
  • Lack of information
  • An inefficient diagnosis pathway
  • Lack of follow-up and support after treatment

As a result of their inquiry the APPG made a number of recommendations which fell into the following categories

  • Improve patient experience
  • Improve awareness
  • Improve the diagnosis pathway

Our Thoughts

The Lake Foundation was happy to see this inquiry take place and happy to see the report published. We were disappointed that, even though we raised it, there was no recognition of the fact that fibroids are more common in black women and black women are more likely to develop multiple and more aggressive fibroids. This is an important point to highlight as it means that there needs to be a greater focus on black women who will need more support. GPs need to be aware of this so they can diagnose black women quickly and look at treatment stratgies before symptoms become unbearable.

More Information

For more information you can read the APPG’s full report below.

By admin
Did you miss our fibroids Twitter chat with Dr Sydney Dillard and Renee Brown Small?
BlogFibroids Twitter Chats
January 19, 2017

Did you miss our fibroids Twitter chat with Dr Sydney Dillard and Renee Brown Small?

Last night, we were so excited to host our first fibroids Twitter chat. We were joined by special guests Dr Sydney Dillard, CEO of Fighting Fibroids and Renee Brown Small Co-founder of The Fibroids Project with host, our own Abi Begho, founder of The Lake Foundation.

If you missed our Twitter chat you can check out our conversation below and look out for our next Twitter chat on Wednesday 15th February at 7pm (UK time).

Update June 2018: Please note that tweets from Renee Brown Small are no longer available so some information is missing from the chat below.

By admin
Fibroid Forum Part 2: Treatment
BlogFibroids
October 21, 2016

Fibroid Forum Part 2: Treatment

On 1st October, we attended the Fibroid Forum. This was an excellent informative event organised by a group of ladies affected by fibroids.  In our previous blog we discussed the first half of the event and in today’s blog we’ll summarise the second half of the event.

The final part of the fibroid forum focused on treatment and we heard from two speakers on this topic, Dr Raj Das, Consultant Diagnostic and Interventional Radiologist at St Georges and Professor Isaac Manyonda, Consultant Obstetrician and Gynaecologist at St Georges.

Uterine Artery Embolisation

fibroidforumdas

Dr Raj Das focused his presentation on uterine artery embolisation (UAE), an established procedure which has been used by doctors since the 1990s to treat fibroids; it involves cutting off the blood supply feeding the fibroid.  Dr Das spoke about the evidence that demonstrated the benefits of UAE. The benefits include patients having a good clinical outcome, patients reporting a good outcome themselves, lower blood loss, a shorter hospital stay and a quicker return to work than  some other procedures.  He also added that for UAE the rate of infection is less than 5% and that after the UAE procedure the fibroids are still there and what they are looking for is symptom improvement rather than disappearance of the fibroids, but in 3-5% of cases the fibroids do clear themselves. He stated that UAE is a viable treatment for those wishing to retain fertility.

Dr Das also mentioned that UAE can be used when women with fibroids have any of the following: severe heavy bleeding,  painful periods, anaemia and pressure on the bladder or bowel.  He also touched on aftercare and suggested that women take 1-2 weeks off work after the procedure, avoid driving for five days and only engage in light activities at home during the recovery period.

Surgical and Medical Treatment

Following Dr Das’ presentation we then heard from Prof Isaac Manyonda. Prof Manyonda discussed surgical and medical interventions for treating fibroids and started by explaining that it is very important that doctors optimise the care that women receive because of the changing demographics of childbirth – women are delaying pregnancy until later in life when fibroids are more common and more likely to be symptomatic.  He said the old adage “babies, then fibroids, then hysterectomy” no longer works.

Fibroids Forum Manyonda

 Prof Manyonda focused his talk on two areas:

  • The surgical removal (myomectomy and hysterectomy)
  • The medical management (drug treatment – ESMYA)

With regards to surgical removal, Prof Manyonda stated that a myomectomy is more complex than a hysterectomy (removal of the womb) and there can be more blood loss. He mentioned that for the same sized fibroid it takes 40 minutes to perform a hysterectomy compared to  sometimes 150 minutes for a myomectomy. He also described the benefits of a hysterectomy which are: it provides a definitive cure, there is no possibility of a recurrence of the fibroids and it has one of the best outcomes  in terms of quality of life, but it does remove all fertility potential.  Prof Manyonda talked about the recovery period saying that a hysterectomy requires a 3-4 night hospital stay and an 8 week recuperation period with a phased return to work.

Prof Manyonda then discussed a myomectomy which is the removal of the fibroids while preserving the womb so there is the possibility of pregnancy in the future.  He explained that it requires a 4 night hospital stay and, like a hysterectomy, women will need an 8 week recuperation period with a phased return to work.  He also advised that women wait 6 months before attempting pregnancy. He did warn that whilst one of the main benefits of a myomectomy is to preserve fertility it can actually compromise the very same fertility that it is intended to preserve due to the formation of scar tissue, so it needs to be done carefully. Furthermore he explained that with a myomectomy we’re dealing with the fibroids that are there and it doesn’t tackle the cause so new fibroids can develop. He also said that it’s best that all the fibroids are removed and none are left behind to give women the best chance of a good outcome long-term.

He mentioned that many women are only offered a hysterectomy because it is felt they are too old for child-bearing or their fibroids are too large, too many or in the wrong place, but research has shown that women should also be offered a myomectomy and age, size, number nor location of fibroids should be a barrier.

Finally Prof Manyonda touched on the medical management of fibroids with the drug ESMYA. He stated that we need as many weapons as possible to fight fibroids as not everyone is suited for surgery or UAE. ESMYA is a drug that initially was licensed to be used 3 months prior to surgery but now it can be used as a standalone therapy. Research has shown that it can reduce the size of fibroids and improve a number of fibroids-related symptoms. He said whilst it is promising we have to exercise caution as its unclear what the long-term impact of this treatment will be. He said ESMYA is a good option for older women or for those who are not keen on surgery.

This was a really informative event which ended with an open discussion where women were able to ask Prof Manyonda and Dr Das questions and share their personal stories.

We’d like to thank the House of Bread for organising this much-needed conference and we were very pleased to have been given the opportunity to have a stall at this event.

By admin
Fibroid Forum Part 1: Introduction, Personal Stories and NICE Guidance
BlogFibroids
October 7, 2016

Fibroid Forum Part 1: Introduction, Personal Stories and NICE Guidance

Last Saturday, we had the pleasure of having a stand at the Fibroid Forum. This was an event organised by a group of ladies from the House of Bread who have all been affected by fibroids.

The event brought together clinical experts, organisations working on various aspects of fibroids and women affected fibroids  to discuss this health issue and its treatment. There was also an open forum with an expert panel giving women the opportunity to share their experiences and ask experts questions.

In this blog we’re going to summarise the first half of the event which covered an introduction to fibroids, personal stories and an overview of the NICE guidance.  In our next blog we’ll summarise the second half of the event which covered surgical treatment, radiology treatment, aftercare and the open forum.

An Introduction to Fibroids

audrey

The event started with a welcome and opening prayer by Dawn Martin who also shared her story and stressed that fibroids are not just physical but emotional and it’s something that affected every aspect of her life including her relationships, work, what she wore and even planning her holidays.

This was followed by a short film that provided an overview of what fibroids are and then we heard from our first main speaker, Audrey Skervin, who talked through some facts and figures  as well as the symptoms.

We then heard from Yvonne Maye who discussed how fibroids have affected her. She stated that she was happy that we’ve now reached an age where women can speak openly about fibroids as when she was diagnosed many years ago issues like fibroids were not spoken about meaning that many women suffered in silence. Another interesting point she raised was the pressure that women felt at the point of diagnosis to have baby. Many doctors, and this was confirmed by other attendees, placed women under a lot of pressure to start having a family without understanding their personal situation and this added to their distress.

Fibroids Research Update: New NICE Guidelines on Heavy Bleeding

christine

Next on the agenda was Christine Clewlow, Medical Scientific Liaison Manager at Gedeon Richter. She gave an update on interesting fibroids news focusing on the NICE guidelines.

NICE or the National Institute of Health and Care Excellence is the organisation that produces evidence-based guidance that is used by the NHS to decide what treatment should be made freely available on the NHS.

NICE has guidance on heavy menstrual bleeding which is very relevant to many women affected by fibroids, as this is one of the main symptoms. The NICE guidance on heavy bleeding was first written in 2007 and a summary version is available here. The parts of the guidance that are relevant to patients are:

  • Any interventions [to treat heavy menstrual bleeding] should aim to improve quality of life measures
  • A women with heavy menstrual bleeding referred to specialist care should be given information before her outpatient appointment
  • Ultrasound is the first-line diagnostic tool for identifying structural abnormalities (e.g. fibroids)
  • A women with heavy menstrual bleeding should be given the opportunity to review and agree any treatment decisions. She should have adequate time and support from healthcare professionals in the decision-making process

Christine highlighted the importance of these guidance  stating that they are designed to ensure that patients are being treated appropriately and women shouldn’t be afraid to challenge doctors if they aren’t following the guidance.

Christine also informed attendees that the guidance is being updated and the new guidance should be published in August 2017

In the discussion following Christine’s presentations there were some really useful recommendations put forward for women who have symptoms they are concerned about:

  1. Before visiting your GP make a list of all your symptoms
  2. Do your research so you arrive at your appointment with your GP prepared
  3. Make a note of all your questions so you can have a constructive discussion with your GP
  4. If you think you may have fibroids, be aware of the guidance so you can have an informed discussion with your GP about next steps.

This ended the first half of the event which was a good introduction into fibroids, providing attendees with a good foundation for the next half which was more clinical and this will be covered in our next blog. Stay tuned!

By admin
My Journey with fibroids, endometriosis and more…
BlogFibroidsMy Fibroid StoryWomen's Health
August 26, 2016

My Journey with fibroids, endometriosis and more…

Many years ago before I even knew what endometriosis or fibroids were I knew the sudden stabbing pains I felt in my side weren’t right. My periods were often heavy and ‘clotty’ but I was too embarrassed to discuss it with anyone and so I suffered in silence.

Some years later I was living in England and when the pain recurred I went to see my GP who disappointed and shocked me with his response when I described my symptoms to him. My GP asked me whether I was planning to have children. I was 22 then and not ready. He replied, ‘well there are a lot of people who don’t have children’. I left the clinic stunned. I wasn’t very assertive then so didn’t answer him back.

Fortunately, I did have my son a couple of years later and all was well. I remember though that the pains would come and go but I just bore it. During a trip to Ghana, I woke up to stabbing pains in my right side again which had me doubled up in pain. When I got back home I saw my GP who referred me to a Consultant who happened to be the one to travel this journey with me. She sent me to carry out some tests which revealed I had endometriosis and fibroids. I was given tablets to help and the pain subsided. By then my son was 5/6 years old. At one of my check-ups my Consultant asked me whether I wanted any more children and advised me to do it ‘sooner rather than later’.

Endometriosis

A year later, on Valentine’s Day, I went for another check-up, my Consultant was about to prescribe some more medication for me when I told her I might be pregnant. We did a test which was positive!

Whilst pregnant and after my daughter’s birth there were no symptoms and my doctor told me many women find the fibroids and endometriosis disappear during pregnancy.

Eight years ago I felt the pains and discomfort again. The same Consultant I had seen over 12 years earlier was still working at the hospital which I considered a blessing as she knew my history. She sent me off for a scan. I knew there was a problem when the lady carrying out the scan stopped joking and suddenly had a serious look on her face. I asked whether everything was alright, she told me my Consultant would be in touch.

I received an appointment. It was a different Consultant this time who asked me to have some blood tests done. I asked him whether I should have them done at my local hospital, he said no and that I had to have the blood tests done straight away!! As I walked to the department to have the tests done I opened the letter and saw the letter C scribbled amongst other medical jargon. I knew straight away I was being sent to test for some form of cancer. And I was on my own!

I got home and looked the medical term up on the internet which confirmed my fears, it was a test for cancer!

Another appointment came and my husband accompanied me. Thankfully it was my regular Consultant. She gave me the results and explained the scan showed a very large cyst on my right ovary which they thought could have been cancerous. The blood tests had however come back clear.

cyst

Ovarian Cyst

My Consultant went on to say she felt I needed to have a hysterectomy as soon as possible because I had a ‘diseased womb’. My husband and I were shocked and we tried to ask for other options. She told us that this time I didn’t have a choice and that on top of my problems with fibroids, endometriosis and the cyst on my ovary I also had an ‘enlarged womb’! Gosh, the list just gets bigger! She then booked an appointment whilst we were in her office for my surgery in 2 weeks’ time!

I had the surgery by this Consultant in September 2006 and thank God all was well. No cancer found. I however had to undergo a ‘total hysterectomy’ which meant losing my ovaries, womb, tubes and cervix. I guess the risk of cancer was great and she wanted to eliminate any possibility.

I cried for a while to think I had lost my ‘womanly bits’ but my husband sternly told me to be grateful to be well and alive. That shook me up and I started to take a positive approach. I had two healthy children, one of whom I didn’t think I would be able to have. I used to call her my ‘little miracle’.

After my surgery I had to go on HRT which I didn’t want to because it made me ‘feel old’. I soon went on it though when I had a sudden surge of heat through my body and quickly stuck my head in the freezer! My family watched me do this in amazement, confusion and amusement!

I have been on HRT patches for 8 years now and feel fine. I have put on a lot of weight but I’m not sure whether that has anything to do with the HRT or the lovely cakes people keep bringing in to work!!

Two months ago a friend mentioned HRT caused her to put on a lot of weight. She came off it and used another form of medication which is made from natural minerals. I have started using it too and have taken myself off the HRT. I have weighed myself and found I have lost a little weight. I need to cut out the cakes and do some walking and I will be back in shape.

I am thankful for my life and have learned it is good to talk, share our fears and experiences; you can learn from someone else and they can learn from you! Let’s be aware and educate ourselves.

Well done on setting up this website!

The Lake Foundation would like to say a big thank you to Naa for sharing her experience with fibroids and endometriosis, we hope that through her experience you have gained some insight into these conditions.

To learn more about fibroids download our booklet below  and for more information about endometriosis visit Endometriosis UK’s website

Be Prepared. Period.

Disclosure: this post contains an affiliate link. Find out more here.

By admin
We Host Our First Fibroids Conference
BlogFibroidsWomen's Health
August 4, 2016

We Host Our First Fibroids Conference

Saturday was a really exciting day for us as we hosted our first fibroids conference, Fibroid Focus. The theme of the conference was treatment and we aimed to provide an in-depth look at all treatment options including natural options.

The day started with an introduction by our founder, Abi Begho, who welcomed everyone, explained the aim of the day and briefly summarised the work we’ve been doing on fibroids. This work has included conducting a survey to understand the needs of black women with fibroids, forming an expert panel, developing a booklet and organising awareness events.

You can watch a clip of Abi talking about the event here

Exercise and Fibroids

Lillian Lartey, Fibroids Conference, Fibroid Focus

We first heard from Lillian Lartey the founder and CEO of I Want My Body Back. Lillian discussed exercise and fibroids and we learnt that exercise has been shown to be beneficial in reducing the risk of developing a number of hormone-dependent conditions such as breast cancer and hence we expect that it will also be beneficial in preventing fibroids but also in improving symptoms as part of a healthy lifestyle. Lillian explained that stress is an important factor as any benefits of exercise are cancelled out if we are experiencing persistent stress in our lives. Finally, Lillian reminded us that we should be aiming for 30 minutes of moderate exercise a day and that we shouldn’t consistently take part in long bouts of exercise as this can put pressure on our body. Lillian ended with three suggestions on how to move forward:

  • Check your lifestyle – how will exercise be a part of your life?
  • Choose the right type of exercise for you and avoid stress-induced exercise
  • Manage your stress – this is more than just resting but managing your thoughts.

You can watch a clip of Lillian’s talk here, download her presentation in the section below this blog piece, listen to her full presentation here and you can read our blog on fibroids and exercise here.

Diet and Fibroids

Leah Salon, Fibroids Conference, Fibroid Focus

Next we heard from Leah Salmon, The Naturally You Coach, who spoke about diet and fibroids. Leah stressed that food is more than something that we eat three times a day because it tastes nice, food is medicinal. To reap the benefits of food and to fight disease we need to have a solid foundation of nutrients for our body to build on. To achieve this Leah advised that we make at least 50% of our diet unprocessed foods. Leah explained that fibroids have been linked to a number of nutritional deficiencies such as vitamin D, magnesium and essential fatty acids.  Leah stated that we can use our diet to prevent the deficiencies that lead to the fibroids or, if we have fibroids, use nutrition to re-balance the deficiencies, build and repair the body and stop the fibroid tumours from growing. Leah then recommended nine foods that can achieve this:

  • Irish Moss and sea weed
  • Bone broth and oily fish
  • Evening Primrose Oil
  • Molasses
  • Tumeric
  • Garlic
  • Green smoothies and vitamin C rich food
  • Vitamin D
  • Water

Leah also warned us about six foods we should avoid:

  • Xenoestrogens (growth hormones in commercially reared animals and can thus be found in red meat, poultry and eggs and also BPA, found in some plastics)
  • Alcohol and caffeine
  • White sugar
  • Processed grains
  • Trans and hydrogenated fats

Finally, Leah stated that success in this area is all about our mindset and we need the willingness to change, the stamina to commit to a healthy lifestyle and patience.

You can download Leah’s slides below this blog, watch clips of Leah’s talk here and here, listen to her full presentation here and you can read more about diet and fibroids here.

Medical Treatment and Fibroids

Rajiv Varma, Fibroids Conference, Fibroid Focus

We also heard from Rajiv Varma, a consultant gynaecologist at the Nuffield Hospital, who presented on the medical management of fibroids.  Mr Varma first described some of the effects of fibroids such as challenges with fertility, problems during pregnancy and a number of symptoms that affect a woman’s quality of life, but he did stress that most women with fibroids do not experience these problems.

Mr Varma explained the treatment options available and these include:

  • Doing nothing (watchful waiting)
  • Drug treatments – mainly used to shrink fibroids before surgery or to relieve symptoms
  • Procedures
    • Uterine Artery Embolisation (UAE) – cuts off blood supply to the fibroids
  • Surgery – to remove the fibroids

Mr Varma then gave us some really good insight and advice on a number of issues:

 NHS treatment vs. private treatment:  He stated that in an ideal world there would be no difference between NHS and private treatment but unfortunately there can be some issues with NHS care such as: lack of choice, long waiting times and limited treatment options. There are a number of benefits though which include: the NHS is better equipped to deal with complex cases,  easy access to supportive services (such as blood transfusions and intensive care),  the consultant is present and other specialists are available.

Second opinions:  Mr Varma explained that we are entitled to get a second opinion and the situations where he would advise that a woman seeks a second opinion are: if you are unhappy with the treatment and management options that have been presented to you; if you lose confidence in your doctor; and if there is poor communication between yourself and your doctor.

Finding the right doctor: he stated that the most effective way of finding the right doctor is to have insider information and nurses are the best people to get information on who the best doctors are.

Herbal Remedies and Fibroids

Patricia Ferguson, Fibroids Confernce, Fibroid Focus

Patricia Ferguson, a Medical Herbalist and a member of the College of Practitioners of Phytotherapy, then discussed herbal remedies that have been shown to be effective in treating fibroids. These remedies either contribute to shrinking the fibroid or are effective at managing some of the symptoms. They are as follows:

Vitex Berries (or agnus cactus) – act on the pituitary gland and depress oestrogen and progesterone (both of which can stimulate the growth of fibroids).
Shepherds Purse – can be effective in treating heavy menstrual bleeding
Red raspberry leaf – can help control heavy menstrual bleeding and can help shrink fibroids

Nettle leaves- can be effective in reducing heavy bleeding
Yarrow – helps to stop the growth of fibroids
Thuja  – helps to stop the growth of fibroids
Burdock  Root – can improve liver function and may inhibit the growth of fibroids
Milk Thistle – improves liver function and therefore can help the live control oestrogen levels

It was also noted that before taking any of these herbal preparations women should seek advice from a medical herbalist as some of the above shouldn’t be taken if a woman is pregnant or if she is on certain medication.

You can download a copy of the handouts to this presentation below this blog and read about some research on complementary and alternative medicine and fibroids here.

Managing the Emotional Impact of Fibroids

Olivia Haltman, Fibroids Conference, Fibroid Focus

Finally, Olivia Haltman discussed the emotional impact of fibroids and how to manage this. Olivia explained that women may experience a number of emotions when going through their fibroid journey. This starts before the diagnosis with some women experiencing fear of the unknown due to symptoms. There can be a significant amount of anxiety whilst waiting for results and after receiving results, there can be a feeling of loss of control and hopelessness where you feel like you can’t control the outcome. Additionally, the vaginal examination can cause a significant amount of stress particularly for women who have had a traumatic sexual experience in the past.

Once a woman has received a confirmed diagnosis she may feel a fear of the growth of her fibroids and experience some unease about how her employers may respond, for example, missed days from work due to symptoms. Additionally, she may have anxiety over her fertility and then feel overwhelmed by the treatment decision.

The emotional impact may also include loss of focus, mood swings, panic attacks, lack of self-esteem, irrational emotions, fears regarding relationships and severe premenstrual syndrome.

So, fibroids can have a significant emotional impact on women which, in many cases, go unrecognised. These issues need to be addressed so that women can heal and move on.

Olivia provided some tips on how to start dealing with the emotional impact and these were:

  • Educating yourself about fibroids – this can be empowering allowing you to make informed decisions about treatment
  • Relaxation and breathing techniques
  • Ground techniques
  • Writing as therapy
  • Positive thinking techniques
  • Talking to your partner, friends and family
  • Talking therapy
  • Healthy eating
  • Holistic lifestyle

Olivia finished by summarising tips from HysterSisters which were:

  1. Don’t play the blame game
  2. Don’t dwell on the what if’s
  3. Don’t compare yourself to others
  4. Give yourself time to heal emotionally as well as physically
  5. Don’t underestimate how much your hormones affect your emotions
  6. Don’t do it alone
  7. Do move on

Conclusions

The event ended with a really good summary from The Lake Foundation’s trustee, Fadzai Marange, who shared a little of her personal experience with fibroids, summarised the talks and appealed to women to follow Leah Salmon’s advice regarding the watchful waiting option i.e. if you have been diagnosed with fibroids and your doctor says: ‘ let’s watch and wait’, don’t be passive during this time, act – adopt a healthy lifestyle and see what you can do naturally. Finally, Fadzai encouraged women to visit their doctor and check whether they have a vitamin D deficiency as this is strongly linked to fibroids.

The Exhibitors

At this event were a  number exhibitors including:

Together they:

  • Provided information on fibroids;
  • Provided information on the support available for women affected by fibroids;
  • Provided information on health and well-being programmes;
  • Sold health and well-being books;
  • Sold natural feminine hygiene products; and
  • Sold natural hair and skin care products.

We also had ‘Meet the Exhibitor’ sessions on the agenda giving attendees the opportunity to hear organisations talk about their work.

Thank you

We had a great day and would like to thank everyone who attended, shared their story and for being a fantastic, engaged audience. We’d also like to thank all the speakers for their thought-provoking, informative presentations and all the exhibitors for attending and sharing their information, services, products and knowledge.

Finally, we’d like to thank Black History Walks, Natracare and Noire Wellness for their support.

By admin
Is Green Tea Extract Effective in Treating Fibroids?
BlogFibroidsWomen's Health
July 29, 2016

Is Green Tea Extract Effective in Treating Fibroids?

There are several medical procedures used to treat fibroids.  Some of these result in infertility and because of this, as well as unease with these procedures, many women are seeking less invasive more “natural” options. But, are these effective?

One area that has been explored is the use of green tea extract which has been used for a variety of medical reasons with some success.

What research has been done?

 To explore this area we’ll be looking at a research paper published in the International Journal of Women’s Health in 2013 – ‘Treatment of symptomatic uterine fibroids with green tea extract: a pilot randomised controlled clinical study.’

Why green tea extract?

In the research paper, the investigators described why they decided to look at green tea extract.  They explained that green tea contains epigallocatechin gallate which has been shown to have useful biological effects. These include: anti-inflammatory, anti-proliferative (stops cells from growing) and antioxidant effects.

They stated that a study conducted by the US Department of Agriculture reported that great tea has an anti-cancer effect. Additionally, they quoted further research that showed that green tea stops the growth of tumours. From these studies, it is safe to conclude that as fibroids are benign tumours green tea extract may be an effective treatment.

Furthermore, at the time of conducting their research, there were no effective drug treatment  for fibroids. So there was a need to explore this area to explore the possibility of developing the first drug treatment.

The researchers had also conducted some preliminary work, not on humans but on fibroid cells grown in their lab and in a mouse model of fibroids. This was very promising with their experiments on the fibroid cells showing that green tea extract caused the cells to stop growing and die. Whilst in the mouse model they saw a significant amount of fibroid shrinkage.

What did they do?

The researchers conducted a small clinical study which included 33 women with fibroids.  Twenty-two women were given green tea extract and eleven women were not. To ensure the outcome of the study wasn’t compromised, the women taking part and the study staff didn’t know who was receiving the extract and who wasn’t (double blind study). The treatment lasted for four months and women were followed up monthly.

The aim of the study was to determine whether treatment with green tea extract could:

  • reduce the size of a patient’s fibroids;
  • reduce the severity of symptoms; and
  • improve quality of life.

What were their findings?

When looking at those women who were given green tea extract the researchers determined that, on average, the size of their fibroids decreased  by 32.6%. Meanwhile those women who didn’t receive the extract actually experienced an average increase in the size of their fibroids of 24.2%.

The researchers then looked at the severity of symptoms and a similar trend was seen. In the women given green tea extract there was a significant decrease in the severity of their symptoms, but there was an increase in symptom severity in those not treated.

Next, the researchers analysed quality of life. They found that the  overall average increase in the quality of life score in women treated with green tea extract was 20.7 (i.e. their quality of life improved significantly). But in women not treated with green tree extract there was only a 2.19 increase in their quality of life score.

Finally, the study looked at menstrual bleeding and they were able to show that green tea extract caused a significant decline in average blood flow, there was no such effect seen in women not treated.

Conclusions

Based on their findings the researchers concluded that:

“… green tea extract has a significant positive effect on the reduction of uterine fibroid burden and symptoms severity. Thus, administration of green tea extract could possibly be an effective oral treatment.”

The Limitations of this Research

It is worth bearing in mind that this was a very small study with only 33 women taking part. This study needs to be repeated on a larger scale to confirm this finding and ensure its accuracy.

To find out more about this study you can read the full paper below.

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TOHETI Supports Women With Fibroids
BlogFibroidsWomen's Health
July 13, 2016

TOHETI Supports Women With Fibroids

Transforming Outcomes and Health Economics Through Imaging (TOHETI) is a three year Guy’s and St Thomas’ Charity funded programme. It includes NHS partners across Lambeth and Southwark who are developing a vision of imaging with patient experience at its core.

One of its  aims is to understand how they can better join up services to treat fibroids to offer the best care to their patients. As part of this work they conducted a focus group which identified that more needed to be done to empower, inform and support women with fibroids. Therefore they started a patient support group and this week we had the pleasure of being invited to attend.

TOHETI’s patient support group started in March 2016 and meets every two months. It is facilitated by a specialist nurse and aims to provide women with a safe, informal setting to share their experiences, ask questions, meet other women with fibroids, understand treatment options and learn about how best to manage their situation.

We attended the support group to learn more about TOHETI’s project and to understand how we could collaborate with them.

The women who attended the support group session told very similar stories to women we have met in the work that we’ve been doing. They explained that it took several years for them to be diagnosed and that they didn’t feel well-informed about fibroids or their treatment options. Additionally, attendees explained that fibroids significantly affect their quality of life, including their relationships and emotional wellbeing. They also felt that no one was listening to their concerns. We also briefly discussed diet with one attendee stating that when she adopted a healthy lifestyle  this significantly improved her symptoms but the challenge was maintaining this lifestyle.

Also in attendance were representatives from Gedeon Richter,  the pharmaceutical company that developed the drug ESMYA® which is used to treat fibroids. They were able to answer questions on treatment, particularly on ESMYA®, its benefits and how it works.

This was an interesting  session that highlighted the need for more support for women with fibrioids and we look forward to working with TOHETI to address this.

The next session will be on  Wednesday 5thOctober at the McNair Centre at Guy’s Hospital. If you’d like to attend  please contact Yvonne Akande (yvonne.akande@kcl.ac.uk).

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TOHETI Launches Initiative to Raise Awareness of Fibroids
BlogFibroidsWomen's Health
June 17, 2016

TOHETI Launches Initiative to Raise Awareness of Fibroids

Back in March we worked with Black History Walks to organise a fibroids awareness event at the University of Westminster. This was a very well-attended event with over 150 women attending. Our speakers provided an overview of fibroids and its treatment, and shared personal stories of the effect of fibroids.

During the event we were absolutely delighted to meet Yvonne Akande, Senior Project Manager at Transforming Outcomes and Health Economics Through Imaging –TOHETI. It was wonderful to learn of all the great work they’ve been doing to raise awareness of fibroids and support women who have been affected.

TOHETI is a three year Guy’s and St Thomas’ Charity funded programme, working with NHS partners across Lambeth and Southwark to develop a vision of imaging with patient experience at its core. The programme has been working to understand how they can better join up services to treat fibroids to offer the best possible care to their patients.

In June 2015 they conducted a series of focus groups which helped identify how they could improve the information provided to patients. This resulted in the development of their new patient information leaflet and video.  You can download their leaflet here and view their video here.

Additionally, TOHETI has been hosting patient support groups and their next sessions will be held on Wednesday 13thJuly and Wednesday 5thOctober at the McNair Centre at Guy’s Hospital. If you’d like to attend one of these sessions please contact Yvonne Akande (yvonne.akande@kcl.ac.uk).

We’re really happy to see fibroids getting a lot more attention as this is an area that women, from our survey in 2013, felt needed a lot more focus.

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The Lake Foundation will be hosting a half day fibroids seminar on 30thJuly 2016. At this event we will be focusing specifically on treatment including natural ways of managing symptoms. For more information and to book a place please click here

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