Avoiding diagnosis delays in endometriosis

Diagnostic delays for endometriosis can occur, with many of the symptoms similar to other common medical conditions.

In October 2020, an All-Party Political Group (APPG) inquiry found that 58% of people, from a group of 10,000 who took part, visited their GP more than 10 times before being diagnosed with endometriosis. Fifty-three percent had symptoms that were sufficiently concerning for them to attend A&E.

According to Endometriosis UK, around one in 10 women in the UK are currently living with endometriosis, a condition that can affect all women and girls of childbearing age, regardless of race or ethnicity.

Diagnostic delays can also occur, as many of the symptoms are similar to other common medical conditions.

Endometriosis can present with a variety of symptoms. NICE guidance states that endometriosis should be considered in women or girls presenting with one or more of the following symptoms or signs:

  • 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, 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.

Importantly, the guidance advises that the possibility of endometriosis should not be excluded if an abdominal or pelvic examination, ultrasound or MRI are normal. If this is the case and clinical suspicion remains, further assessment and investigation, including referral, should be considered.

Endometriosis UK, in partnership with the Royal College of General Practitioners (RCGP), has launched a Menstrual Wellbeing Toolkit for healthcare professionals to help improve knowledge and aid diagnosis of menstrual conditions, particularly in primary care.

MDU cases

During 2020 and 2021, there were 32 incidents reported to the MDU involving endometriosis. A common factor in these incidents involved a complaint or claim following an allegation of a missed or delayed diagnosis.

A delayed diagnosis can lead to prolonged pain and suffering and may cause other physical and psychological problems for the patient, such as infertility, anxiety and depression. Some of the findings from the incidents we examined are listed below.

  • The alleged delay in diagnosis from the time the patient presented ranged from four months to nearly five years.
  • The age ranges of the patients diagnosed with endometriosis ranged from 15 to 51 years.
  • Three-quarters of the incidents (24) were related to complaints and a quarter (eight) to claims for compensation. Of the complaint files, two later became a claim for clinical negligence. No cases were referred to the Health Service Ombudsman or GMC.
  • Three-quarters of complaint files related to patients were seen in general practice (24), all having been seen by a GP.
  • Of the eight claims files, three related to care provided by a GP and five related to care provided by obstetrics and gynaecology. Of the latter, two related to private care rather than that provided by the NHS.

Case example

Here is an example of a fictional case highlighting the issue and the factors worth considering.

A 23-year old woman had presented to her GP a number of times over the last six months with ongoing lower abdominal pain and very heavy periods. The pain could be so bad on occasions that she hadn't been able to go to work and had vomited. She had been started on the oral contraceptive pill and mefenamic acid to see whether this would alleviate her symptoms and was advised to take pain killers as required. No abnormality had been found on examination.

The patient returned on a number of occasions over the next six months, having kept a diary of her symptoms. She had noted that she also tended to have pain on opening her bowels during her period, which the doctor felt was likely due to constipation. Although she could not be sure, she also thought that she'd had blood in her urine during her period. Her symptoms were now so bad that she had been taking more and more time off work and was worried that this might have an impact on her career.

At this point the doctor, having excluded a urinary tract infection, arranged a pelvic ultrasound scan. The doctor was reassured by the fact that the scan did not reveal any abnormality and changed her oral contraceptive and pain killers to see whether this would improve her symptoms.

The patient, still being concerned about the underlying cause of her symptoms, arranged a private consultation with a gynaecologist. A laparoscopy was performed, showing she had endometriosis affecting her bladder and bowel, most of which the gynaecologist was able to remove. Following this, the majority of the patient's symptoms improved. The patient made a complaint to the practice alleging a delay in diagnosis.

With the MDU's assistance the doctor responded to the patient's complaint. As part of the response, the doctor arranged for the clinical staff at the practice to have a training session about endometriosis with a local gynaecologist and reviewed the relevant local and national guidelines. The practice also did an audit of patients with similar symptoms to review their management and ensure appropriate investigations and referrals had taken place. The learning and reflection undertaken by the practice was communicated to the patient who was satisfied with their actions, allowing the complaint to be closed.

Delayed diagnosis

Failure to diagnose endometriosis or a delay in diagnosis is not necessarily negligent, but a claimant may have a case if they can demonstrate that a doctor's management fell below the expected standard. For example, by not adequately examining the patient, or by not considering the diagnosis when a patient presents with those signs and symptoms as described in the NICE guidance.

The advice listed below can be used to help reduce the risk of a delayed or missed diagnosis of endometriosis.

  • Keep practice protocols and staff training on gynaecological conditions up to date and in line with national and locally agreed guidelines.
  • Actively consider whether you need further training in the diagnosis and referral pathway for endometriosis and other gynaecological conditions and whether this should be included in your personal development plan and appraisal.
  • Make sure any patient consultation about relevant symptoms is clearly documented, including the history taken, the examination performed, the differential diagnosis and the management plan.
  • Check that the patient understands plans for follow-up and that these are also clearly documented. Take into account a patient's family history of gynaecological problems, including endometriosis. Some research suggests that there may be a genetic element to the condition and some families may be more susceptible than others.
  • Ensure you make appropriate, timely referrals for further assessment, treatment or procedures.
  • Where a referral has been made, it's advisable to have systems in place to check that an appointment follows, so that no one is lost in the system.
  • Your practice should also have a safe system for following up test results, including a process for responding to abnormal results and making sure these are communicated to patients.
  • Have a protocol in place for dealing with test results and administrative tasks, such as messages to and from patients. Protocols are a helpful statement of the standard of care to be provided and a definition of responsibilities within the team.
  • Ensure the practice has a robust system, such as a significant event audit, for analysing patient safety incidents. This can highlight lessons that can be learned and what changes should be put in place to prevent a similar situation in the future.
  • Provide patients with an explanation and apology if something does go wrong, particularly if the outcome is poor or unexpected. Take steps to deal with the consequences and arrange appropriate treatment and follow-up. Contact us at the earliest opportunity if you have any concerns.

This page was correct at publication on 07/03/2022. Any guidance is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.