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’.

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.

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!

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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

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

A study published in the British Journal of Cancer has found that the effect of combined hormone replacement therapy (HRT) in increasing a women’s risk of developing breast cancer is likely to have been underestimated in previous studies.

HRT is used to treat the symptoms of menopause (hot flushes, mood changes etc) by replacing the oestrogen that is lost during a woman’s menopause. There are two type of HRT, oestrogen only HRT and combined HRT which is mixture of oestrogen and progestogen.

Over the years studies have identified that women using HRT have an increased risk of developing breast cancer but this was only felt to be a slight increase with many stating that the benefits of taking HRT outweigh the risks.  This new study has found that combined HRT actually has a bigger effect on breast cancer risk than was previously thought.

This New Study

This new  piece of work was part of the Breast Cancer Now Generations Study which was set up in 2004 to understand the causes of breast cancer. The full Generations Study is following 113,000 women in the UK for 40 years.

 For this research into the effect of HRT, 39183 women from the Generations Study were selected who were at menopausal age. These women had  been monitored for 6 years through questionnaires which asked a number of questions including questions about their HRT use.

After the six years of monitoring it was found that 775 of the 39,183 women had developed breast cancer. Statistical analysis revealed that women using combined HRT were 2.7 times more likely to develop breast cancer than those who had not used HRT. This applied to use of HRT for a median length of time of 5.4 years and when they explored longer use of HRT, so 15+ years of use, this increased to women being 3.27 times more likely to develop breast cancer. No overall increase in breast cancer risk was observed in women who used oestrogen only HRT.

They also found that the increase in risk returns to almost normal once combined HRT use is stopped. Researchers noted that after a year and also two years of ceasing to take combined HRT there was no significant increase in breast cancer risk.

How Did Other Studies  Result in an Underestimation of Risk?

The underestimation by previous studies occurred because of the way the studies were carried out. Previous studies didn’t comprehensively follow-up with women and document their use of HRT  (e.g. did some women  stop using HRT over the course of the research) nor did they determine the age at which women went through the menopause.  These oversights caused inaccuracies.

What Does this Mean for Women Considering Taking Combined HRT?

Baroness Delyth Morgan, the Chief Executive of Breast Cancer Now said:

“Whether to use HRT is an entirely personal choice, which is why it’s so important that women fully understand the risks and benefits and discuss them with their GP. We hope these findings will help anyone considering the treatment to make an even more informed decision.

“On balance, some women will feel HRT to be a necessity. But in order to minimise the risk of breast cancer during treatment, it is recommended that the lowest effective dose is used for the shortest possible time.

“The good news is that the increased risk of breast cancer begins to fall once you stop using HRT. “If anyone is at all worried about either HRT or breast cancer, we’d highly encourage you to speak to your GP.”

The Lake Foundation believes that women considering using the combined HRT should have a discussion with their doctor about the pros and cons and make an informed decision about whether to proceed with treatment. If you can avoid combined HRT we would recommend that you do so.

You can download the full research paper below.

At our recent Fibroid Focus conference an interesting question was raised: “Has anyone used the Mooncup?” There were a few blank stares, which came from us too, and then an attendee answered: “Yes, and it is so much better than tampons and pads.”

This little exchange got us thinking.

Many women with fibroids experience heavy prolonged periods meaning they use large quantities of pads and tampons. Over the last few years there has been quite a bit of focus on the chemicals in these products and this has raised concerns about possible health effects. This led to the formation of a number of companies who now manufacture organic feminine hygiene products to give women a natural alternative.

But are women with fibroids aware of all the options available when it comes to feminine hygiene products and are they aware of alternatives like the Mooncup (a menstrual cup made by Mooncup Ltd)? This is particularly important for women with fibroids, who are likely to need to use large quantities of pads and tampons, and may be concerned about their prolonged exposure to the chemicals in these products.

In this blog series we are going to introduce you to a selection of feminine hygiene products starting with the menstrual cup today.

What is a Menstrual Cup?

A menstrual cup is a small flexible cup usually made of silicone, but can also be made of rubber, that is inserted into the vagina and collects menstrual blood. Depending on the amount of flow the cup is removed every 4-8 hours, emptied, washed and reinserted. At the end of a woman’s period the cup can be sterilised and the same cup used again every month. The shelf life of menstrual cups is fairly long with manufacturers recommending that they be replaced, on average, every 5 years.

Many companies make menstrual cups and these include:

• Mooncup Ltd
• DivaCup
• Lunette
• IrisCup
• MeLuna

Are Menstrual Cups New?

The menstrual cup was invented by Leona Chalmers in the 1930s and she patented her design in 1935. So the menstrual cup is over 80 years old and has been used for decades.

Is it Safe to Use?

Research has shown that the cup is safe to use with only a very small number of issues reported.

There has been just one case of toxic shock syndrome linked to the use of a menstrual cup, making this a very rare occurrence.  Additionally, one research paper reported that a woman may have developed adenomyosis and endometriosis  after using a menstrual cup for four years and the Endometriosis Research Centre in the US has called for more research to determine if there is link between the use of the menstrual cup and endometriosis.

Several studies have shown that, provided the cup is used properly and is kept clean, the risk of infection is low.  Also, for those worried about allergic reactions the majority of cups are made from medical grade silicone and silicone sensitivity is very rare. For those with a latex allergy they just need to ensure that they use a cup that is made entirely of silicone and does not contain rubber.

The Benefits

There are many benefits of using a menstrual cup. These include:

• Environmentally friendly – one cup can be used for 5 years which means there is less waste created than if tampons or pads are used
• Cost effective – menstrual cups costs about £20 and last for up to 5 years so this works out much cheaper than pads which are estimated to cost about £80 per year and tampons about £43 per year.
• No exposure to toxic chemicals – menstrual cups do not contain the bleaches, pesticides and other chemicals that the majority of pads and tampons contain
• Doesn’t cause dryness –tampons and pads can cause vaginal dryness because they are made of absorbent material, the cup simply collects fluid and isn’t drying
• Less leaks

The Drawbacks

There are some disadvantages associated with the menstrual cup:

• Inserting and removing the cup can be challenging
• Emptying the cup can be quite messy
• Women with certain conditions may not find a cup that fits properly. This has been reported for women with a dropped uterus and certain types of fibroids
• The cup needs to be kept clean to avoid infection so it requires some maintenance every month and needs to be sterilised after each cycle

Conclusion

If you’re looking for an alternative to tampons and pads a menstrual cup is an option you can explore. It may take some time to get used to it, but we recommend that you give it a few months before you make a judgement.

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

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

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

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, 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

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:

• Gedeon Ricther
• I Want My Body Back
• Nearer Nature
• Noire Wellness
• Pure Goodness
• The Naturally You Coach
• TOHETI
• Wisdom of Osun

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.

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.

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 5^thOctober at the McNair Centre at Guy’s Hospital. If you’d like to attend  please contact Yvonne Akande (yvonne.akande@kcl.ac.uk).

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 13^thJuly and Wednesday 5^thOctober 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 30^thJuly 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

This week it was reported that Johnson and Johnson, the company that produces talcum powder, has lost a second court case where another woman has claimed that she developed ovarian cancer after using talcum powder for feminine hygiene reasons.

The company has been instructed by a jury to pay a settlement of $55M to the claimant. This case follows a case in February of this year where the family of a women who died from ovarian cancer was awarded $72M after it was claimed that she developed ovarian cancer after using talcum powder for many years.

Johnson and Johnson will be back in court and may face a long stretch of court appearance as it faces 1,200 lawsuits accusing the company of not adequately warning women of the risks associated with using talc-based products.

The question is: is there a risk of developing ovarian cancer from the use of talcum powder? The short answer is, we don’t know.

Cancer Research UK says the following:

“Scientists are trying to see if this is the case, but for now the evidence is still uncertain. However, even if there is a risk it is likely to be fairly small.

“Cosmetic body and talcum powders often contain a mineral compound called talc. Several studies have looked at talcum powder use and ovarian cancer. While on the whole the studies have seen a modest increase in the risk of ovarian cancer in women who use talc on their genitals, the evidence isn’t completely clear. So we can’t be sure whether or not talc itself could cause ovarian cancer”

The Chief Executive of the UK’s leading ovarian cancer charity, Ovarian Cancer Action,  has said the following on this issue:

“If you’re currently using talc, don’t panic. Given evidence is inconsistent we do advocate a ‘better safe than sorry’ attitude and advise that women using talc on their genitals stop doing so. But it’s important to remember that the suggested increased risk from using talcum powder is very small.

“While the relative increase of a third suggested by some studies sounds significant, the absolute risk of getting ovarian cancer still remains very low. We’re talking about the difference between a 2% risk and a risk of 2.5%.”

This sentiment about using talcum powder for personal hygiene reasons is echoed by the NHS who say:

“Most gynaecologists recommend using plain, unperfumed soaps to wash the area around the vagina (the vulva) gently every day, as opposed to talc or perfumed soaps, gels and antiseptics.” 

The take home message is that there isn’t yet clarity on whether talcum powder increases risk of ovarian cancer and while this uncertainty remains it’s probably better to avoid using talcum powder on the genital area.

The Christmas and New Year break are over and although I enjoyed it, I felt strangely relieved.  I think that’s because although it’s normally a really enjoyable time of year- it can also be highly stressful.  We know stress has an effect on general health. But how much do we know about how stress affects particular conditions associated with the Black community?  Black women have the highest risk of developing fibroids (non-cancerous growths in or around the womb). They can lead to heavy periods, period pain and pregnancy challenges (amongst other things). It is useful to know if stress plays a part in the existence of fibroids since we can control the way we handle stress.

A basic search of the literature doesn’t reveal many studies focused on the link between stress and fibroids.  One study did note that the increase in stress hormone cortisol can cause fluctuations in oestrogen and progestogen. Low levels of these hormones are linked to a reduction in fibroid growth.  This particular US study actually investigated the links between major-life event stress and fibroids in both Black and White women.  The authors reported  that the greater the number of ‘major life events’ the female experienced, the more likely she was to have fibroids. The pattern was evident among white women who had experienced all levels of stress yet only obvious  among  very highly stressed  Black women.  The authors of another study looked at 22,002 premenopausal  US Black women.  They reported that high levels of self-reported racism increased the risk of fibroids.  However, a study on Chinese women did not find any link between stress and the presence of fibroids. You can find out more about these studies here, here andhere.

Due to the small number of studies which investigate the link between fibroids and stress, it is difficult to say whether there is a true link- more work needs to be done in this area.  However, some people do find that they discover their fibroids after a period of stress in their lives. Have any of you had this experience?

We get a lot of questions about natural ways of treating and managing fibroids and in this week’s blog post we take a look at what the research tells us about the effectiveness of complementary medicine in treating the symptoms of fibroids.

Fibroids are non-cancerous growths that develop in or around a woman’s womb. They can cause a number of symptoms including pelvic (tummy) pain, infertility, heavy and/or painful periods, back pain, anaemia, constipation, frequent urination and pain during sexual intercourse.

The exact cause of fibroids is unknown but research does suggest that fibroids are caused by a combination of genetic, lifestyle and hormonal factors.  Those most at risk of developing fibroids are: black women, those who are overweight, women of child bearing age (particularly women who are 25-45 years old), those with a family history of fibroids and women who haven’t given birth.

There are several treatment options for fibroids these include a hysterectomy, myomectomy, embolization, endometrial ablation and new MRI-based treatments. Some of these treatments such as a hysterectomy and endometrial ablation result in infertility and because of this as well as unease with medical procedures, many women are exploring less invasive more “natural” options for managing their fibroids, but are these effective. What does research tells us about “natural” methods, more formally known as complementary and alternative medicine (CAM), for treating fibroids?

What Does the Research Tells Us?

To explore this area we’ll look at one recent research paper which was published in 2014 in the European Journal of Obstetrics & Gynaecology and Reproductive Biology and is entitled ‘Use of Medicine, Surgical and Complementary Treatments among Women with Fibroids’.  This paper summarised a study of 933 premenopausal women aged 31 to 54 with symptomatic fibroids. In this study women took part in face-to-face interviews every year for up to eight years to assess their symptoms following use of the treatment they opted for.

Researchers explored and compared the effect of CAM, Western Medicine and uterus-preserving surgeries. They classified CAM as the use of exercise, herbs, diet, acupuncture and physical therapy; Western medicine included hormonal contraception, analgesics and narcotic pain medicine; and uterus-preserving surgeries included myomectomy, embolization and endometrial ablation.

The majority of women in this study, 57%, didn’t have a hysterectomy or uterus-preserving surgery. The majority of these women used Western medicine to treat their symptoms and the most commonly used type of Western medicine used was anti-inflammatory analgesics followed by narcotic pain medicine.  Fifty percent of women who used the anti-inflammatories said it made their symptoms “a lot” better, but 10% were bothered “a lot” or “some” by the side effects. For women who used narcotics, 60% said it made their symptoms “a lot” better but 30% were bothered “a lot” or “some” by the side effects. Fifty-five percent of women who used the combined hormonal contraception said it made them feel “a lot” better, but 22% were bothered “a lot” or “some” by the side effects. Finally, the progestin IUD was the most effective with 71% of women who used it saying it made them feel “a lot” better, but 24% were bothered by the side effects.

CAM was used by a significant number of women to treat their fibroid-related symptoms. The most common methods used were exercise, herbs and diet. Improvements in symptoms were lower than that observed for Western medicine with 39% of women trying exercise, 38% of women trying herbs, 43% of those trying dietary changes, 45% trying acupuncture and 41% trying physical therapy  saying it made their symptoms “a lot” better, and as expected bothersome side effects were rare, less than 5% in all CAM therapies.

When looking at surgery, women who underwent uterus-preserving surgery had a greater improvement of pelvic symptoms compared to women who used Western medicine or CAM, but the researchers noted that despite this observation women who used Western medicine or CAM“observed significant improvements in pelvic problems as well as dyspareunia (pain during sex), pelvic pressure, bladder pain and menstrual cramps.”

In explaining how CAM works in improving symptoms, it was stated that some foods, vitamins and minerals can decrease the production of prostaglandins which cause a number of fibroids-related symptoms.

Based on their  finding the researchers concluded that “uterus-preserving fibroid surgery is effective, but many symptomatic women can be successfully treated with non-surgical management, including complementary and alternative therapy”

From this research study we can see that diet, exercise, acupuncture, herbs and physical therapy may be effective in some women at treating fibroid-related symptoms. Women wanting to explore any of these as an option should have a discussion with their doctor.

We do recognise that what’s missing from this study is the detail around what herbs and dietary changes women tried and we’ll be contacting the researchers to get some more information about this.

You can read the full paper by downloading it below.