The Lake Foundation's Fibroids Survey Report

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

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

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

Awareness of fibroids prior to diagnosis

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

Route to Diagnosis

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

Treatment

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

The Effect of Fibroids and its Treatment on Quality of Life

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

The Availability of Information and Support

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

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