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Women’s health: Endometriosis

Endometriosis affects 1.5 million in the UK – and can take on average a shocking eight years to diagnose. What can practitioners do to support and advise women with this potentially debilitating condition?

Endometriosis is a growing issue with heavy health consequences. It can decrease quality of life due to severe pain, fatigue, depression, anxiety, and infertility.1 For some, debilitating endometriosis-associated pain will prevent them from going to work or school.1

What is endometriosis?

Endometriosis is “a condition where cells similar to the ones lining the womb are found elsewhere in the body”, says Faye Farthing, head of communications at the charity Endometriosis UK. She explains that each month, these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain and the formation of scar tissue (adhesions).
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This oestrogen driven, chronic inflammatory condition most commonly affects pelvic organs, but can also, in some cases, occur in different areas of the body including the bowel, diaphragm and in the chest cavity, explains Mr Hemant Vakharia, consultant gynaecologist at London Gynaecology.

According to Endometriosis UK, the condition affects 1.5 million in the UK, equating to approximately one in 10 women and those assigned female at birth. “The condition is most active from puberty to menopause, although the impact can be felt for life,” says Ms Farthing.

Women who have not had children or who have irregular menstrual cycles are at a higher risk of developing endometriosis, according to the Endometriosis CaRe Oxford group – a nationally and internationally acclaimed centre of expertise in clinical care and research into endometriosis, and part of the Nuffield Department of Women’s and Reproductive Health at the University of Oxford. It is also more common in women who have a close relative with the condition. “There is some evidence that endometriosis is becoming more common, but the exact reason for this increase is not known,” the group says.

Recent media coverage has improved awareness of endometriosis, and over the years, doctors have developed diagnostic skills such as ultrasound and access to laparoscopy, says Mr Vakharia.

What causes endometriosis?

The exact cause of endometriosis is unknown, but there are several theories, including retrograde menstruation (where menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of leaving the body), genetic factors, and immune system dysfunction.

Currently, there is no cure for the condition. “Endometriosis UK is calling for investment in research to find better treatment and management options, the cause of endometriosis, and a cure,” says Ms Farthing.

Symptoms can vary in intensity from one person to another. “Whilst some may not experience symptoms at all, for others, it can be debilitating,” says Ms Farthing.

Mr Vakharia says endometriosis can present in several ways. “Pain is a major feature in endometriosis, and the impact it can have on those who suffer with it can be enormous, which is why prompt diagnosis and treatments are crucial.”

He says symptoms of endometriosis include:

  • Painful periods (dysmenorrhoea). Endometriotic cells are stimulated by hormones in the patient’s natural cycle which causes inflammation and pain.
  • Pain with intercourse (dyspareunia). The inflammation can lead to structures in the pelvis sticking together and also lead to thickening of tissues developing. As a result of the inflammation and thickening, patients with endometriosis can have pain with intercourse.
  • Pain opening the bowels (dyschezia). In patients who have endometriotic deposits on bowel, or in those where the inflammation has caused their bowel to stick to other structures, it can be painful to open their bowels. This can occur with their periods, or all the time.
  • Other issues include: chest pain when menstruating – which occurs if there is endometriosis in the chest cavity or around the diaphragm – difficulty conceiving, and ovarian cysts (which can be large) if endometriotic cells are on the ovary.

Mr Narendra Pisal, consultant gynaecologist at London Gynaecology, says it can be difficult to differentiate between ‘normal’ periods and ‘heavy or painful’ periods as there is often no objective way of comparing. “A lot of women just put up with that ‘time of the month’ and are told to get on with it,” he says. However, if someone is having to put their life on hold for those few days, or if their sex life is affected by pain during sex (dyspareunia), “it is time to take note and ask for some tests,” he says.

Mr Pisal says it can be useful for patients to have a diary of their menstrual cycle with particular emphasis on heaviness, pain and any other symptoms with a system for indicating severity. It can also be helpful for them to note down if they have to take painkillers and how many. If the symptoms are affecting someone’s life and they have to take time off work, “that is also a significant factor”, he says.

Endometriosis can have “a huge impact on all aspects of someone’s life – including their physical and mental health, education, career, relationships, and fertility,” says Ms Farthing. Despite this, she says it currently takes on average “a shocking eight years” to get a diagnosis of endometriosis in the UK.

“A lack of societal understanding and recognition of the disease has contributed to many years of those experiencing symptoms often being ignored. We hear all too often that people are told ‘chronic pain is normal’, or that it’s just something that should simply be ‘put up with’. Education is also key, and every healthcare practitioner should recognise the signs and symptoms of endometriosis.

“Getting access to the right treatment and support at the right time and in the right place, with access to skilled and experienced healthcare practitioners, gives the best chance for endometriosis to be managed effectively,” says Ms Farthing.

The NICE Guidelines on Endometriosis were issued in 2017 and adopted across the UK, “but haven’t been implemented”’, says Ms Farthing. 2 Implementing these and the associated NICE Quality Standards on Endometriosis would be “a significant, positive step change in improving endometriosis diagnosis, treatment, and care”, she says. “Streamlining the diagnosis process will reduce wasted appointments with GPs, in hospitals and in A&E, and save many years of suffering and distress for the undiagnosed,” she added.

The pandemic has also had “a huge impact on endometriosis care, with many stuck on waiting lists for surgery and treatment – often in debilitating pain”, says Ms Farthing. “There must be an overhaul of the way the NHS prioritises patients, so those in the most need get access to care, including consideration of the disease on wider impacts such as quality of life and stopping people working, and fertility. This requires strategic capacity planning of endometriosis care. Without this, those with endometriosis will continue to face unacceptable waiting times,” she says.

Impact of endometriosis on patients’ lives

In 2020 a report by the All-Party Parliamentary Group (APPG) showed:

  • 95% said that the symptoms of endometriosis had impacted their wellbeing negatively or very negatively.
  • 90% would have liked access to psychological support, but were not offered this.
  • 89% felt isolated due to their endometriosis.
  • 81% said endometriosis has impacted their mental health negatively or very negatively.
  • 42% said they often, or very often, had time off school because of endometriosis symptoms, with 12% missing exams at school often or very often.
  • 38% were concerned about losing their job, whilst 35% had a reduced income due to endometriosis.

Source: All Party Parliamentary Group on Endometriosis (2020)

Treating endometriosis

Endometriosis is treated with a combination of medications, such as pain relievers, hormones and surgery. “The type of treatment depends on the severity of the condition and the woman’s individual circumstances, such as her desire for future pregnancy,” says the Endometriosis CaRe Oxford group.

 Mr Vakharia says patients can be treated with the combined pill, progesterone only pill, progesterone intrauterine device, or surgery. “Sometimes we use medication that induces a temporary menopause by blocking hormonal signals to the ovary. This reduced stimulation of the endometriotic tissue. This option is often used before surgery for severe disease. A laparoscopy will allow diagnosis and excision of disease which can improve symptoms,” he says.

He adds that there are a number of trials being conducted that look at the use of medical therapies compared with repeat surgery, and “the interest in endometriosis is great for advancements in care options”.

Mr Saurabh Phadnis, consultant gynaecologist and gynaecological oncologist at London Gynaecology says that once endometriosis is identified, the surgeon may proceed to treat this at the same time. “This depends on the severity of endometriosis. Minimal spots of endometriosis may be ablated using diathermy. Gold standard treatment is excision of endometriosis. In more severe stages of endometriosis, extensive surgery including large bowel resection and anastomosis may be needed.”

Complications from endometriosis treatments can include side effects from medications, such as nausea and headaches, and surgical complications, such as infection and bleeding. “These complications are typically addressed through close monitoring and additional medical interventions, if necessary,” says the Endometriosis CaRe Oxford group.

As well as support for physical symptoms, “it’s important that mental health support is offered and available for those who wish to access it, as part of the care pathway”, says Ms Farthing. Research shows that those with physical health conditions are more likely to experience poor mental health, yet are often not offered support for their mental health.

NICE are currently reviewing three sections of the Guideline on Endometriosis: diagnosis (including the use of imaging), surgical management and surgical management where fertility is a priority. “As part of this review, we’d also like to see mental health support offered to anyone with diagnosed or suspected endometriosis who wishes to access it,” says Ms Farthing.

Endometriosis and nutrition

For those with endometriosis, “nutrition can play a role in easing symptoms by supporting the immune system and inflammation”, says Laura Southern, nutritional therapist at London Gynaecology. She says patients should be advised that a good starting point for diet changes includes ensuring their diet is high in brightly coloured vegetables to support both immunity and detoxification. They should also include lots of foods rich in ‘essential fat’ for their anti-inflammatory benefits like small, oily fish (such as salmon) and raw nuts and seeds (a handful daily). Ms Southern also suggests minimising caffeine, tobacco, and alcohol intake.

Endometriosis, in addition to severe pain and debilitating symptoms, can affect other structures such as the bowel, bladder, and important reproductive organs.  In some cases, it can lead to difficulties conceiving, says Mr Vakharia. Additionally, it can lead to bowel symptoms, and often patients are misdiagnosed as having irritable bowel syndrome which can delay diagnosis, he says.

Patients with endometriosis can benefit from support from healthcare providers, family, and friends, as well as support groups and counselling. “Educating themselves about the condition can also help patients better manage their symptoms and improve their quality of life,” says the Endometriosis CaRe Oxford group.

As well as accessing support via the NHS, “we urge healthcare practitioners to signpost patients to Endometriosis UK’s support services to access free support from trained volunteers with lived experience of endometriosis,” says Ms Farthing.

“We run a helpline and web chat service, an online forum ‘Health Unlocked’, and virtual and in-person support groups. Our support services are an incredible way of speaking to others who understand what patients are going through.

“Endometriosis can feel incredibly isolating, but knowing that other people are going through the same thing can be a huge support.”

Resources:

Endometriosis UK: https://www.endometriosis-uk.org

Endometriosis CaRe Oxford group: https://www.wrh.ox.ac.uk/research/endometriosis-care-2

References

  1. World Health Organization (WHO) (2021) Endometriosis. Available at: https://www.who.int/news-room/fact-sheets/detail/endometriosis Accessed February 2023.
  2. National Institute for Health and Care Excellence (NICE) (2017) Endometriosis: diagnosis and Management. Available at: https://www.nice.org.uk/guidance/ng73 Accessed February 2023.
author avatar
Kathy Oxtoby

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