Supporting endometriosis with patient-centric care
It’s endometriosis month and all around the world, we’re seeing community campaigns to raise awareness about this common, yet often ‘invisible’ or misdiagnosed condition.
MedialDirector’s Chief Clinical Advisor and GP, Dr Charlotte Middleton, discusses how health professionals can support patients with this condition with the right patient-centric care, resources and awareness tools.
What is endometriosis?
Endometriosis is a common disease in which the tissue that is similar to the lining of the womb (the endometrium) grows outside it in other parts of the body, causing subtle to significant pain. Recent research suggests 10% of women suffer from endometriosis at some point in their life with the disease often starting in teenagers.
Often called an ‘invisible illness’, Endometriosis is often undiagnosed, misdiagnosed, or diagnosed years after symptoms have arisen. In fact, Anglo-American studies have shown a delay from 3 to 11 years between the onset of pain symptoms and the final diagnosis of endometriosis.
It is unknown exactly what causes endometriosis, as it can be linked to various factors such as genetics, the environment, the type of endometrium a patient has, the flow of blood and the response of the endometrium during a menstrual cycle.
The challenge for healthcare professionals is that without knowing the exact cause of endometriosis, it is still unclear as to how to treat this disease with a lasting cure.
Symptoms and what to look out for
The symptoms can be non-specific, but there are specific things that doctors should be looking out for when it comes to diagnosis.
- Heightened pelvic pain for women.
- Heightened pain before and during periods
- Pain during or after sex
- Painful urination during periods
- Painful bowel movements during periods
- Other gastrointestinal upsets such as diarrhoea, constipation, nausea.
- Other bladder or bowel issues associated with the pain.
In addition, many women with endometriosis suffer from:
- Chemical sensitivities
- Frequent yeast infections
Research suggests that while women with endometriosis have an increased chance of fertility issues than those who don’t, two-thirds of women with the condition will not have issues with falling pregnant if diagnosed and treated.
Identifying the pain
One of the reasons why endometriosis is often overlooked or misdiagnosed is because both patients and health providers mistake it for common period pain.
To help improve diagnosis rates, primary healthcare providers need to take the time to take a very detailed history from the patient, without assuming the pain is simply severe period pain. Ask your patient when the pain occurs – is it just when they get their period, or is it during the whole cycle? And consider all of the other possible symptoms consequential to the pain, that increases the chances it could be endometriosis.
Endometriosis and mental health
It’s important we recognise endometriosis as a whole body experience, which has significant repercussions on a patient’s mental and emotional wellbeing. Shock, disbelief, anger, frustration, sadness, numbness, fear, anxiety, depression, can be just a range of emotional and psychological experiences endometriosis sufferers go through.
If there is an obvious emotional or mental health issue in association with the pain, such as anxiety and depression, then consider investigating further yourself or consider referring the patient to a gynaecologist.
Medication, treatment and pain management
As controversial as they are, opioids remain a seemingly easy fix for chronic pain, a reality many women with endometriosis know all too well. Try not to over-prescribe them wherever possible and instead, opt for recommending heat packs, paracetamol and non-steroidal anti-inflammatories such as Diclofenac, Ibuprofen or Mefenamic Acid (Ponstan) or other stronger anti-inflammatories if needed.
There is also the oral contraceptive pill, which can be very helpful in managing pain in a variety of ways. The progesterone component has a therapeutic effect on the endometrium, which can then shrink and suppress the endometriosis itself, and may slow the progression of endometriosis over time. The pill allows period cessation (by skipping the sugar pills), or at least a reduction in the number of periods in a year, which gives better pain relief overall.
It is quite safe to recommend taking the pill continuously for long periods of time. The pill also suppresses ovulation, which can provide relief from mid-cycle pain. However, the pill is less likely to help with bowel pain and pain associated with sexual intercourse. Women do not have to be sexually active to take the pill.
How technology can help
Doctors and healthcare professionals can easily improve patient awareness of their condition and how to manage it via patient information factsheets, such as Healthcare Factsheets, which are embedded into the software and can be shared electronically with the patient or printed. Patients can also share these factsheets with family and friends, to help further raise awareness about endometriosis and managing the condition.
The Healthshare Referrals directory can also be helpful for GPs to refer patients to the right specialist. The directory helps identify not only the relevant gynaecologists in the area, but also what their special interests are. This helps narrow your referral base further. The directory also offers a number of referral templates such as radiology and pathology, which can also help optimise endometriosis investigation and management.
There are also various apps that can help a woman monitor their cycle, which can help them determine exactly when they have had their period, started spotting and experienced ovulation pain or other symptoms.
Ultimately, the vision for the future of health is that cloud solutions like Helix, MedicalDirector’s clinical and practice management software, will eventually allow greater interoperability, where you could plug in these pieces of patient information to help provide more personalised care and improve accuracy of diagnosis.
The Worldwide EndoMarch Campaign raises awareness of endometriosis through events held globally on March 30, 2019. To show your support in Australia, join or plan an EndoMarch High Tea, to help raise funds for raising endometriosis awareness, increasing endometriosis education and to fund endometriosis research. https://www.endomarchaustralia.org.au/