March is endometriosis month. The campaign aims to highlight the extent of this painful condition which affects an estimated 1.5 million women in the UK.
Despite the number of women affected and the debilitating pain and menstrual bleeding associated with this condition, almost half of the population do not know what the condition is.
Emma Cox, Chief Executive of Endometriosis UK, said:
Despite affecting 10% of females from puberty to menopause, endometriosis remains widely unknown, a hidden disease. Alarmingly,awareness is much lower in younger women, where over half do not know what endometriosis is. We all have a role to play in turning this around and taking menstrual and pelvic pain seriously; whether supporting people in the workplace to manage their condition alongside their career; healthcare practitioners supporting diagnosis; teaching menstrual wellbeing in all schools across the UK; or simply raising awareness of the symptoms so that people know if what they are experiencing is “normal” and it is no longer a taboo subject.
This March, important conversations must be had so we can live in a world where menstrual health issues, including endometriosis, are recognised and understood.
Here are a few surprising statistics about endometriosis:
- 1 in 10 women of reproductive age in the UK suffer from endometriosis.1
- 10% of women worldwide have endometriosis – that’s 176 million women.1
- The prevalence of endometriosis in women with infertility can be as high as 30–50%.2
- Endometriosis is the second most common gynaecological condition in the UK.3
- Endometriosis affects 1.5 million women, a similar number to those women affected by diabetes.4
- On average it takes 7.5 years from onset of symptoms to get a diagnosis.5
- Endometriosis costs the UK economy £8.2bn a year, taking into account treatment and loss of work.6
- The cause of endometriosis is unknown and there is no definite cure.
Research shows that medical professionals are not taking women’s symptoms seriously
According to a number of surveys, women have reported that their doctor dismissed their symptoms and failed to refer them for further tests.
All-Party Parliamentary Group on Women’s Health
In 2017 a report by the All-Party Parliamentary Group on Women’s Health7 reviewed the results of a survey of 2600 women suffering from endometriosis and fibroids. The report found a lack of awareness of the condition amongst medical professionals, highlighted by the following findings:
- 42% of women said that they were not treated with dignity and respect.
- 40% of women with endometriosis needed 10 GP appointments or more before being referred.
- 39% of women had to seek a second opinion
Women also reported that medical professionals failed to provide information on the condition and the treatment options available. Figures published in the report noted:
- 62% of women were not satisfied with the information that they received about treatment options.
- 67% of women said they got most of their information from the internet.
- Nearly 50% of women with fibroids and endometriosis were not told about the short term or long term complications from their treatment.
- Only 16% of NHS Trusts provide women with written information about Heavy Menstrual Bleeding and pelvic pain.
The report also highlighted the poor standard of medical care provided to women with delay in diagnosis being a serious concern. The delay in diagnosing endometriosis can have a significant impact on a woman’s physical and mental health.
The key points were:
- 40% of those surveyed needed 10 GP appointments or more before being referred to the specialist.
- 12% of women surveyed with fibroids took 1-2 years from their diagnosis to get their treatment.
BBC Survey of 13,500 Women
BBC research into endometriosis8, revealed that almost half of the women surveyed had suicidal thoughts and many required addictive painkillers.
The Government is finally listening to endometriosis suffers
Following the BBC survey, one of the largest of its kind on endometriosis, the Government took notice and in February 2020 began an inquiry into the condition, the challenges facing sufferers and how care could be improved. This new inquiry9 will be led by the APPG (All Party Parliamentary Group) on Endometriosis with support from Endometriosis UK and is scheduled to publish its findings in July 2020.
Sir David Amess MP, Chair of the APPG on Endometriosis said:
The APPG is delighted to give women with endometriosis and healthcare experts the opportunity to share their first-hand experiences of endometriosis so we can produce a set of recommendations to the Government. The APPG is committed to raising awareness of the condition and representing the views of those affected and we urge as many people to come forward as possible to respond to the inquiry.
Emma Cox, CEO of Endometriosis UK, added:
“This inquiry is a welcome opportunity for the Government and NHS to get real about the impact of endometriosis on individuals and society, and to take it seriously. The Inquiry provides the Government with the opportunity to deliver recommendations for much-needed improvements for the diagnosis, treatment and support of 1.5 million women living with the disease – and reduce the suffering of future generations.
We urge all people with endometriosis to take part in the survey. This is a huge opportunity to push for real change for people affected by endometriosis and shape the way care is delivered in the future.”
Endometriosis or heavy periods?
Many women experience heavy menstrual bleeding and intense pain and may not be aware that they are suffering from endometriosis. This lack of awareness and the ignorance of medical professionals, has led to serious delays in diagnosis and treatment for many sufferers.
Endometriosis is a condition where tissue, similar to the lining of the womb, begins to grow in around the bowels, ovaries, fallopian tubes and other areas of the pelvic cavity. It is a chronic condition which could lead to infertility and bladder and bowel problems.
Symptoms of endometriosis often include:
- Heavy periods
- pain in your lower abdomen or back – usually worse during your period
- significant period pain
- pain during or after sex
- painful bowel movements
- feeling sick, constipation, diarrhoea, or blood in your urine during your period
- difficulty getting pregnant
As the condition can only be diagnosed via a surgical procedure known as a laparoscopy, you must be referred by your GP.
During a laparoscopy, a laparoscope (a thin tube with a camera at the end) is inserted into the abdomen through a small incision. The camera will send images of your pelvic cavity to a video monitor and the surgeon will look for signs of endometriosis. Some tissue may be removed for further examination. There are potential risks and complications associated with laparoscopies, especially those carried out negligently. The risks of this procedure include visceral injury and bleeding as well as an injury or perforation of the bowels, bladder, uterus, fallopian tubes and ureters.
Endometriosis UK has provided a Diagnosis Pack which provides more information.
Endometriosis treatments available
Although there is no cure for the condition, treatments are available which may help reduce the symptoms. These include:
- Hormone medicines and contraceptives – including the combined pill, the contraceptive patch, an intrauterine system (IUS), and medicines called gonadotrophin-releasing hormone (GnRH) analogues.
- Surgery to cut away patches of endometriosis tissue. The risks of surgery include infections, bleeding or damage to affected organs.
- An operation to remove part or all of the organs affected by endometriosis – such as surgery to remove the womb.
Could you obtain compensation for the late diagnosis or misdiagnosis of your endometriosis?
If you believe that you have been harmed by medical negligence relating to gynaecological surgery, childbirth, procedures such as laparoscopies or the misdiagnosis of endometriosis or other condition, you could be entitled to claim compensation.
If we believe that you have the grounds for a compensation claim, we will support you by providing a ‘No Win – No Fee’ agreement. This means that you will not be charged any upfront legal costs in order to start your claim and if your claim is not successful, you will not incur any costs*. To start your free case evaluation, contact our gynaecological claims experts on 0333 577 9444, email firstname.lastname@example.org or complete our online form.
1. Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
2. Meuleman C, Vandenabeele B, Fieuws S, Spiessens C, Timmerman D, D’Hooghe T. High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners. Fertil Steril 2009;92(1):68-74.
5. Diagnosis Survey. Endometriosis UK. February 2011.
A total 2890 women with endometriosis took part in a public awareness survey for Endometriosis UK. The average time given for diagnosis time from symptoms to diagnosis was 7.5 years. A similar finding of 7.4 years was found in:
Arruda MS, Petta CA, Abrão MS, Benetti‐Pinto CL. Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Hum Reprod 2003;18(4):756-759.
6. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012;27(5):1292-9.