Fibroids
Fibroids are very common – around 2 in 3 women and people with a uterus will develop them at some point in their lifetime. Because fibroids are non-cancerous and so common, the symptoms and impact of them can often be misunderstood or overlooked.
This page provides information about fibroids and our work to raise awareness of the impact they can have on quality of life.
The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer
What are fibroids?
- Fibroids are non-cancerous growths that develop in or around the womb (uterus).
- The growths are made up of muscle and fibrous tissue, and vary in size. Some fibroids can be as small as a pea, but it isn’t unknown for them to be as large as a melon.
- Fibroids most often appear in people aged 30 to 50. They are more common in women of African-Caribbean origin.
More research is needed to establish what causes fibroids, but they have been linked to the hormone oestrogen. They may grow faster when oestrogen levels are higher. People who are overweight tend to have higher levels of oestrogen and hence are more prone to fibroids. However, fibroids can affect people of any weight, background, or age.
Most women (around 2 out of 3) who have fibroids won’t have any symptoms. However, 1 in 3 will have symptoms and they might include heavy and / or painful periods, pelvic pain, lower back pain, a swollen or bloated belly, needing to pee more often, constipation, and pain during sex. Heavy periods can sometimes result in iron-deficient anaemia, causing extreme tiredness and weakness. Occasionally, very large fibroids can make it difficult to get pregnant.
Unfortunately, because heavy or painful periods are often seen as ‘normal’, women can delay seeking help, or might feel they’re not being taken seriously when they do. Similarly, because fibroids tend to be more common in those who are overweight, patients sometimes report finding it difficult to get doctors investigate their symptoms properly until they’ve lost weight. In reality, even when people do lose weight, their fibroid symptoms may continue.
When it comes to making a diagnosis, fibroids are often found using a pelvic ultrasound. Treatment options can range from medication to reduce bleeding or pain, outpatient procedures to treat small fibroids, or surgery to remove larger fibroids, called ‘myomectomy’. In some cases, patients and their doctors might decide that the best option is an operation to remove the womb (hysterectomy).
Not every treatment works well for everyone. Some medications can cause side effects. Some procedures, like hysteroscopies, can be painful for patients, especially without good pain relief. Surgery can be effective, but carries risks — and fibroids can sometimes grow back in patients where the womb isn’t removed.
You can find more information about symptoms and treatments for fibroids on the NHS Wales website here.
What are we calling for?
Our overall aim is to highlight both the impact fibroids can have on those affected, and how biases can sometimes make getting support more challenging.
Fibroids will affect two thirds of women and people with a uterus – that’s over 1 million women in Wales alone! Around 300,000 of those will experience symptoms to a greater or lesser degree and it is perhaps because fibroids are so common, that these symptoms might not be taken as seriously as they should, even when they are significantly impacting women’s quality of life.
There is a widespread lack of clinical research into health issues affecting females and, where fibroids are concerned, this means that we are still unsure what causes them. Without more certainty around this, it can be difficult to prevent or treat them satisfactorily.
By raising awareness of the impact of fibroids on quality of life, we can encourage more research into causes, treatments, and cure, improving experiences and outcomes for patients in Wales.
We know that, in Wales, people with fibroids can experience long diagnostic delays and, if they require surgical treatment, wait a long time to see a gynaecologist.
Many of the symptoms associated with fibroids, like heavy, painful periods, can be seen as ‘normal’, so too can needing to pee more frequently, especially as women reach middle age.
Some people can find it embarrassing or ‘taboo’ to talk about these issues, whilst peeing a lot can be seen as a bit of a joke. The result is that those affected might take longer to seek help.
When they do reach out for support from healthcare providers, people living with fibroids tell us that they can experience barriers to getting an early diagnosis and treatment, including:
- Being told that their symptoms aren’t anything to worry about, even when the symptoms are affecting their quality of life and causing wider health issues
- Being told that symptoms are due to their being overweight but not being offered any help or support to lose weight. Symptoms can often persist even when the person has lost weight, which means they can suffer for a long period of time
- Encountering prejudice in healthcare settings, which can cause patients to have poor experiences in appointments. Evidence shows that women of colour can find it more difficult to have their symptoms taken seriously and their wishes taken into account when it comes to medical help-seeking. This is an inequity which must be addressed, especially because fibroids are more common in women of African-Caribbean origin.
We need to:
- address the misconception that, because they aren’t cancerous, fibroids don’t matter or won’t cause symptoms that can affect people’s health and wellbeing
- tackle the taboos that surround heavy and painful periods, which can be a barrier to accessing help, support, and healthcare when we need it
- stop normalising or making a joke of urinary leakage and ‘peeing a lot’ because it can be a symptom of a health problem that needs investigating and treating
- encourage investment in research on topics like fibroids so we can identify causes, prevention, and more effective treatment
- identify, challenge, and address unconscious biases in medical settings, which can make it more difficult for patients to access timely and appropriate healthcare
- see training for healthcare providers designed and delivered by people with lived experience to improve patients’ experiences.
Our champion: Carina H
“I was diagnosed with fibroids 8 years ago. At the time I accepted my heavy periods as normal, but I knew something wasn’t right due to a lump I could feel deep inside my abdomen.
I would be changing period protection every 20-30 minutes throughout the day and also at night. This had a big impact on my sleep. I would wear a moon-cup, cloth sanitary pad and period pants to deal with the blood loss, but would still have frequent flooding.
I was told fibroids were more prominent in people from Afro-Caribbean backgrounds, but not given any reason for this. I was also told that a hysterectomy was the most common course of action but because I wanted to have children, this was put on hold.
Over time, my symptoms worsened and included daily back and hip pain, a visible lump and distorted bloated stomach, heavy blood loss, anaemia, incontinence, difficulty breathing, and escalating anxiety. I had an operation which removed 11 fibroids, the biggest 3 each being about the size of a small orange.
I have had to self-advocate for the healthcare I have received, including being forced to submit complaints due to lack of communication or joined-up care. Delays and cancellations have caused me a lot of stress and anguish. For these reasons, I am pleased to be a FTWW Fibroids Champion, so that I can raise awareness of the impact this condition can have a person’s body and quality of life. I am disappointed at the lack of support offered by health service providers to people with this condition and want to change this for those coming after me.”
What have we achieved?
We are developing our campaigning around fibroids but some of our achievements so far in this space are outlined below:
We raise awareness through events, media, training and fundraising
- We’ve created a bi-lingual leaflet raising awareness of our fibroids campaign
- We ensured our members’ stories and information about fibroids featured in pan-Wales media coverage of escalating gynaecology waiting lists
We take part in consultations, advisory boards and co-production of healthcare
- We ensured patients’ experiences of trying to access healthcare for fibroids were included in our response to the NHS Wales consultation on its ‘Putting Things Right’ process, which helped to inform how concerns and complaints about NHS services are investigated
- We are working with the national clinical Gynaecology Implementation Network in Wales to improve care for patients with non-cancerous gynaecological issues like fibroids
- We are involved in the coproduction of the 10-year NHS Wales Women’s Health Plan, which features fibroids in one of its 8 priority areas,‘Menstrual Health’ (p50)
Related news and blogs
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We are delighted that ‘Bloody Brilliant’, an online period health resource created by the young people of Wales for the young people of Wales, is live and on social media. Bloody Brilliant is delivered by Welsh Government and the WHIG (Women's Health Implementation...
Fibroids stories
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Advocating for yourself or someone else
Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.
We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.
Useful links and documents
FTWW's bi-lingual fibroids leaflet
This flyer provides a brief overview of our work in this area and why it is needed
Women's Health Wales: A Quality Statement for the Health of Women, Girls and those Assigned Female at Birth 2022
Read more about our recommendations to the Welsh Government in this report by the #WomensHealthWales coalition
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