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Endometriosis awareness month: how can midwives play their part?

It may have passed you by, but the month of March 2021 has been designated Endometriosis awareness month.

For an estimated 1 in 10 women across the world (Endometriosis.org) and 10% of women of reproductive age in the UK (Endmetriosis-uk.org) this is a painful and potentially debilitating condition.
It is cited to be the second most common gynaecological condition after fibroids yet it may take from 4-10 years to diagnose (RCOG), often due to misdiagnosis, use of hormonal treatments, or misunderstanding of menstrual pain (ESHRE 2013). This alone makes the condition a significant women’s health issue that may impact both the women in midwives care, as well as midwives themselves.
Endometriosis is diagnosed when cells similar to those of the endometrium, the lining of the uterus, are found in the pelvic cavity, which may cause a variety of symptoms due to inflammation and subsequent scar tissue. In addition, cysts may develop on the ovaries and there may be impact upon the fallopian tubes. The NICE guidance for Endometriosis: diagnosis and management lists the following as potential symptoms:

  • Chronic pelvic pain
  • Period-related pain (dysmenorrhoea) affecting daily activities and quality of life
  • Deep pain during or after sexual intercourse
  • Period-related or cyclical gastrointestinal symptoms, particularly 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

The British Fertility Society suggests between 25-40% of infertile women have some form of endometriosis, which may go undiagnosed for some time. Once pregnant, women do not tend to experience many symptoms, though some report more pelvic pain during early pregnancy. Postnatally women may experience the symptoms of endometriosis on return of menstruation (endometriosis-uk.org), which dispels the myth that becoming pregnant solves the condition.
Diagnosis of endometriosis will require a detailed history of the woman’s experiences, with confirmation by transvaginal ultrasound followed by laparoscopy (NICE). Treatment ranges from pain coping and relieving strategies, hormonal to surgical. The decision for each treatment will lie in the severity of the different symptoms for individual women, mainly for relief of symptoms. Positive news this week highlighted studies on a new non-hormonal medication, and research into the genetic background of the condition and links to other inflammatory conditions (BBC).
So how is this relevant to midwives? Anything related to reproductive health and wellbeing is of course important for us to know as a professional group. A recent systematic review has reported some potential increase in pregnancy of the risks of gestational hypertension, pre-eclampsia, preterm birth, placenta previa, placental abruption, caesarean section, and stillbirth (Brientoft et al 2021 Endometriosis and Risk of Adverse Pregnancy Outcome: A Systematic Review and Meta-Analysis – PubMed (nih.gov). It is yet to be seen how this knowledge will impact on future practice.
However, for many women in our care they may have experienced severe pain or debilitating symptoms on a monthly basis. The psychological impact and fear of pain may be carried forward into pregnancy, along with experience of low self-esteem (Culley et al 2013). Many will have also been silenced when trying to get help for the condition, leading to concern of the relationship they develop with care providers. Some will have also waited years for treatment for symptoms or infertility leading to powerful emotional investment. With awareness of her previous reproductive health, midwives should be able to support with increased sensitivity and help to relieve fears.
Finally, midwives and managers should also be aware and supportive of colleagues who may experience the pain of endometriosis. Discussions around the impact of menstruation do not often take place in the workplace, and you may not be aware of those who have been living with the condition for many years, or who are facing issues around infertility. Attitudes to staff wellbeing should be improved in order to enable staff to feel able to share when they are experiencing pain or other symptoms that may affect their ability to work. The Endometriosis UK charity provides useful guidance for employers around support in the work-place.
There is clearly more to be done to raise the profile of endometriosis in order to increase research that will lead to better treatment and support for the women who live with it on a daily basis. More research also needs to be carried out on the impact of pregnancy on the condition, the condition on pregnancy outcomes and how women experience pregnancy and the aftermath. Midwives are in a strong place for asking the questions that will lead to the evidence and providing the support that women need.
Dr Jenny Hall
March 2021

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