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Endometriosis: a cycle of pain

20 March 2020

The scale of the misery caused to two million women by endometriosis will come under the spotlight during Endometriosis Awareness Month in March. Journalist Jo Waters reports on the drive for greater awareness.

Endometriosis is big news at the moment – suddenly it seems everyone is waking up to the devastating effects of the disease that affects one in 10 women of reproductive age in the UK (Rogers et al, 2009).

Fevzi Shakir, consultant gynaecologist at the Royal Free Hospital, a specialist in gynaecological endoscopy and a medical adviser to Endometriosis UK, explains how the condition comes about: ‘Cells similar to those found in the lining of the womb [endometrial tissue] can be found in other areas of the body, including the pelvis. They can grow on organs such as the bladder and the bowel, and as they respond to hormones they can become inflamed and bleed.

‘The blood can’t escape as it does during periods in the womb, so it causes inflammation. Lesions and adhesions can then form scar tissue.’ There is no cure, but treatments can ease symptoms.

Last month, the government announced an inquiry into the disease to be led by the All-Party Parliamentary Group (APPG) on Endometriosis. This followed publication of research by the BBC and the charity Endometriosis UK, revealing the true impact of the disease on women’s everyday lives (Bevan, 2019).

Half the 13,500 women who took part in the survey said they had suicidal thoughts because of endometriosis, and many resorted to using highly addictive painkillers. The impact on their careers, sex lives, quality of life and education was serious in many cases. The findings echo a study published in 2012, which found the economic burden associated with endometriosis treated in referral centres was similar to diseases such as diabetes, Crohn’s disease and rheumatoid arthritis, mainly through its impact on quality of life and productivity loss (Simoens et al, 2012).

The new inquiry, led by the APPG on Endometriosis with support from Endometriosis UK, will investigate the many challenges facing those with endometriosis, and what steps the government needs to take to turn this around through taking evidence from women and health practitioners.

Sir David Amess, chair of the APPG, says: ‘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.’

Last year the publication of the book Pain and prejudice, by journalist Gabrielle Jackson, who has endometriosis, also highlighted the silent suffering of women who cope with the disease for all their fertile years.

‘A lot is starting to happen now,’ acknowledges Emma Cox, chief executive of Endometriosis UK. ‘But it needs to, as we know so many women are affected and that they often go undiagnosed and untreated. They often don’t know that what they are suffering from isn’t normal and don’t seek medical help. When they do, it can take several years to get a diagnosis of endometriosis. The average length of time for diagnosis is a shocking 7.5 years, a combination of women not realising that the pain they are experiencing is not normal and doctors and nurses not picking up on the symptoms.’

Pelvic pain

Fevzi says: ‘Endometriosis can cause pelvic pain, bladder and bowel problems, painful intercourse, bloating and infertility’ (See What are the symptoms of endometriosis?, below).

‘Other symptoms can include pain in the legs and lower back caused by the endometrial tissue growing near or on pelvic nerves. The severity of pain does not always correlate with the amount of endometrial tissue – you can get a lot of pain from a small amount of tissue if it has grown near a nerve, for instance.’

‘We still don’t know exactly what causes endometriosis – although the most popular theory is retrograde menstruation. This is where some menstrual blood flows up through the fallopian tubes and into the pelvis where endometrial-like cells attach themselves to pelvic organs.

‘Endometriosis does tend to run in families so there is also believed to be a genetic element, although no specific gene has yet been identified.’

Fevzi says many women (around 20%) have painful periods, which can be controlled with painkillers, but if the pain stops them completing their daily activities, alarm bells should sound. ‘If a woman’s pain is so bad that she can’t get out of bed or faints and it stops her going to work or school, the possibility of endometriosis should be considered,’ he says.

‘School nurses may be able to play a helpful role here in educating girls about what is a normal period. Endometriosis may have gone undiagnosed in their family and they may have been told by family members that period pain is normal for them. Health visitors who see women after they’ve given birth also have the opportunity to discuss menstrual cycles and ask about symptoms such as pain.’


What are the symptoms of endometriosis?

NICE advises that the condition should be suspected if women ( including those under 17) present with one or more of the following symptoms:

  • Period-related pain (dysmenorrhoea) affecting daily activities and quality of life
  • Chronic pelvic pain
  • Deep pain during or after sexual intercourse
  • Period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements
  • Period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine
  • Infertility in association with one or more of the above.

NICE, 2017


Why is endometriosis so hard to diagnose?

Tania Adib, a consultant gynaecologist in London, says part of the reason diagnosis can take so long is that endometrial tissue may not show up on MRI or ultrasound scans in the early stages.

‘Teenage girls are much more likely to have irregular and heavy periods,’ she says. ‘They are usually all over the place because of the imbalance of progesterone and oestrogen, and it can take time for their cycles to settle down. This is why it’s rare to be diagnosed in your teens with endometriosis; most women will be in their 20s and 30s.

‘The only way to diagnose endometriosis for sure is through an invasive laparoscopy, and we don’t really want to put younger girls through a surgical procedure as it carries risks of infection, bleeding, thrombosis and damage to the abdominal cavity. It’s not something to be undertaken lightly and you need a high index of suspicion for endometriosis to go ahead with this – the woman must be suffering from pain that is not responding to treatments such as painkillers and the contraceptive pill – and that’s why it can take so long to diagnose.’

However, a new blood test is being developed, which has been reported to be available in the UK by the end of the year (Alderton, 2019). The manufacturer claims it can detect endometriosis with 90% accuracy by picking up fragments of DNA in the blood that contain biomarkers of a gene mutation. Fevzi says it’s not clear yet whether this will be available on the NHS and how it will fit into the existing NICE diagnosis algorithm.

How can endometriosis be treated?

Tania says the first-line treatment for endometriosis is management of pain with painkillers, including anti-inflammatory drugs and paracetamol.

‘However, if this is insufficient, we can prescribe the combined contraceptive pill to stop ovulation and the menstrual cycle. The contraceptive pill won’t stop endometrial tissue growing though, just control the symptoms. The Mirena intrauterine system [which releases progestogen directly into the uterus] can also be used to stop periods.

‘Other drugs called GnRH analogues can be prescribed to stop oestrogen production and induce a temporary menopause. But the only other way of treating endometriosis is surgically removing the tissue via laparoscopic surgery, but it can be challenging to remove widespread disease and the tissue can grow back afterwards.’

Does endometriosis cause infertility?

‘Although endometriosis is one of the leading causes of infertility, plenty of women with endometriosis are able to have children,’ says Tania. ‘Endometriosis isn’t necessarily a bar to having a baby, but I do advise that women don’t leave it until they are 40 if they want to have kids (success of assisted conception is better the younger you are).’

‘The degree of endometriosis doesn’t correlate with how fertile you are either. Some women with advanced disease will have no problems conceiving and others with less extensive disease will experience difficulties, and we don’t know why this is.

‘Surgically removing endometrial tissue has been shown to improve fertility so there are things we can do to help improve women’s chances of conceiving.’

‘We don’t want to scare young girls about endometriosis, but it definitely helps to be told what to expect in terms of a normal period’

Spreading awareness

Emma says school nurses could play a key role in raising awareness of endometriosis and make period pain seem less embarrassing and taboo by discussing what is considered normal with teenage girls during personal, social, health and economic (PHSE) sessions at school: ‘Menstrual wellbeing is now part of the PHSE curriculum. We don’t want to scare young girls about endometriosis, but it definitely helps to be told what to expect in terms of a normal period – yes, some period pain is normal -but if it’s stopping you going about your daily activities you may need treatment.

‘Some of the language used matters too – we tend to talk about sanitary protection and women’s hygiene, which implies menstruating is somehow dirty. It would be more helpful to say menstrual products.’

Emma adds that HVs could tackle myths about endometriosis with women in the months after they’ve given birth. ‘One of the most common is that pregnancy “cures” endometriosis – which it doesn’t. They could also ask about women’s cycles and encourage them to see a GP if they regularly experience excessive pain.’

Image credit | iStock


Resources


References

Alderton H. (2019) World’s first blood test for endometriosis launched. See: pharmafield.co.uk/pharma_news/worlds-first-blood-test-for-endometriosis-launched (accessed 18 February 2020).

Bevan G. (2019) Endometriosis: thousands share devastating impact of condition. BBC News. See: bbc.co.uk/news/health-49897873 (accessed 18 February 2020).

Endometriosis UK. (2019) Endometriosis facts and figures. See: endometriosis-uk.org/endometriosis-facts-and-figures (accessed 18 February 2020).

NICE. (2017) Endometriosis: diagnosis and managment. See: nice.org.uk/guidance/ng73 (accessed 18 February 2020).

Rogers PA, D’Hooghe, Fazleabas A, Gargett CE, Giudice LC, Montgomery GW, Rombauts L, Salamonsen LA, Zondervan KT. (2009) Priorities for endometriosis research: recommendations from an international consensus workshop. Reproductive Sciences 16(4): 335-46.

Simoens S, Dunselman G, Dirksen C, Hummelshoj L, Bokor A, Brandes I, Brodszky V, Canis M, Colombo GL, DeLeire T, Falcone T, Graham B, Halis G, Horne A, Kanj O, Kjer JJ, Kristensen J, Lebovic D, Mueller M, Vigano P, Wullschleger M, D’Hooghe T. (2012) The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Human Reproduction 27(5): 1292-9.
 

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