I recently spoke at the Australian Lawyers Alliance Medical Law Conference about endometriosis. The conference discussed several medical law topics related to obstetrics and gynaecology. It was great to hear the perspective from a different profession about the systemic challenges women face and how we can advocate for better care. Women’s pain was a large part of the discussion and while there are many causes and contributors for pain, endometriosis is an important one.
Endometriosis is common, it can take years to diagnose, and the impact that it can have on people’s lives is significant. There is a new RANZCOG Guideline that outlines an evidence-based approach to getting the right care. Here are some of the highlights from the Guideline and the discussion we had at about endometriosis at the ALA Conference.
What is endometriosis?
Endometriosis is a condition where tissue similar to the lining of the uterus grows outside it. It’s thought to affect 6–10% of people of reproductive age — around 190 million people worldwide. People with endometriosis can have a range of different symptoms and experiences. Endometriosis can be asymptomatic (no symptoms), or it can cause pelvic pain, painful sex, heavy periods, infertility, fatigue, bowel changes, painful urination, and depression.
When endometriosis is found, it’s often given a stage from I (minimal disease) to IV (severe disease) based on how much disease is in the pelvis. Two important caveats: staging doesn’t account for disease found outside the pelvis, and it doesn’t correlate with how much pain or how many symptoms someone has. A “mild” stage doesn’t mean mild symptoms, and a higher stage doesn’t always mean more pain.
Why it can take years to diagnose
On average, it takes 6–10 years to get a diagnosis. There are many reasons for the delay in diagnosis. Firstly, women’s pain (especially period pain) has been normalised and has not received enough attention or care. The symptoms also overlap with other conditions and until recently there has not been a test to diagnose endometriosis without surgery. The delay starts from not recognising the pain as an issue and not recognising the possible causes of the pain. The delays continue when management is deferred until a diagnosis is made and because access to tests, specialists, and surgery are costly and limited.
In that time, the pain continues.
How we diagnose endometriosis
Now, high-quality specialised gynaecological ultrasounds are recommended. These ultrasounds can detect endometriosis that is moderate-severe (stage III-IV disease). This is means that endometriosis can be diagnosed without surgery for some patients. A normal ultrasound does not completely rule out endometriosis though, because stage I-II disease can be missed. If you have a normal ultrasound but still have symptoms, your doctor can talk to you about your options.
If an ultrasound is not available or appropriate, a pelvic MRI can be offered instead.
Surgery still has a role, but it is not considered the first line option for diagnosing endometriosis.
Sometimes it’s not endometriosis
And sometimes it’s endometriosis and something else. It’s important that we consider possible causes of pain beyond endometriosis. Some causes of pelvic pain are inflammatory bowel disease, painful bladder syndrome, pelvic floor muscle pain, fibromyalgia, and there are many others. These conditions can present similarly and can also occur alongside endometriosis, which can make diagnosis challenging.
Getting the best results requires thinking broadly about other causes and contributors to pain.
What caring for you and managing your symptoms might look like
One really important recommendation from the RANZCOG Guideline is that you can start treating pain before you have a diagnosis. We can, and should, start treating pain early.
A diagnosis can be a really important thing to have for some people, but care does not have to wait until we have all the answers. Especially because the tests we have are limited, wait-times are long, and surgery isn’t right for everybody.
Pain itself should be managed in its own right. Your doctor can talk to you about a range of options that can help manage pain, including physiotherapy, psychological support, medication such as paracetamol and anti-inflammatories, and — for some people — antidepressant medications that work for pain.
For pelvic pain that is related to endometriosis, hormone therapy is an important part of managing symptoms. There are a range of options that your doctor can discuss with you to find that right option. Often a 3 to 6-month trial is needed to know if it is helping. If it isn’t helping, a different option can be trialled.
Again, surgery has a role here too, but it is not first line. If these strategies are not working, or if you are planning to conceive, then surgery may be the right decision for you. The type of surgery to treat endometriosis will depend on your symptoms, the location of the endometriosis, your anatomy, and your health goals.
Good care often requires a team approach. Your team may include your general practitioner, a physiotherapist, a psychologist, a gynaecologist, a pain specialist, and there may be others. But the team member that matters most is you. Your care should always be shaped around your story, your circumstances, and your priorities.
The key takeaways
- Endometriosis is common, and diagnosis is not straightforward for everyone.
- Pain can be a key feature of endometriosis, but there are other causes and contributors that need to be considered.
- Caring for you and your symptoms does not need to wait for a diagnosis.
- Surgery is not first line for diagnosis or management.
- Management of pain and endometriosis is a team effort and you’re the leader.
If you’re experiencing symptoms that concern you, or want to talk through your options, get in touch to book a consultation.
