2020, Responses from: Mr Simon Edmonds, Dr Philip Suisted and Dr Simon McDowell
What should I do if my doctor doesn’t believe me when I talk about endometriosis, my pain and symptoms?
Dr Simon McDowell
This is always a tricky situation in any professional (or even personal) context. Having doubts about the persons opinion or recommendation, or that they believe what you are saying is true. In the medical context, this process is actually very clear. There is a formalised and transparent process.
The Medical Council of New Zealand quotes:
“seek a second opinion if you have questions about any aspect of your treatment. Tell your doctor you would like a second opinion, and ask for the name of another doctors. You don’t have to argue or justify your decision”
This is in a document titled ‘You & Your Doctor’ – A guide to your relationship with your doctor.
Many patients, probably most, will do some online searching with regards to their potential or proposed medical problems. Sometimes it can be difficult to delineate what is ‘real’ and what is ‘not’. Symptoms of many conditions can be vague, and attributable to many different things. Bloating for example is a condition often attributable to endometriosis. But is can caused by many other disorders, dietary factors are very common. A good doctor will take in to account all of these symptoms, signs (ie. what we see or palpate), investigations, and things like the patients age and background. Then, they will determine what problems may or may not be causative. and most importantly what the options are going forward.
It may be useful to reflect that a doctor is weighing on many different sources of information, with critical appraisal of that information, not just taking what is read as being real. Experience is also an important facet, not only in recognising key trends but also knowing when a ‘gut feeling’ should be ignored.
A good clinician will value a second opinion. They will ask their colleagues what they think about a case or situation, what they would do, even ask a few different colleagues to perhaps gather some reassurance that a proposed course of action is reasonable. A good clinician will not be afraid of a patient asking for a second opinion. They will promote the sentiment of gathering additional analyses and opinions.
A doctor should believe what a patient is saying is reflective of what they believe. No person, patient or doctor should feel like they are being ignored or that they are not being believed.
Mr Simon Edmonds
This question sadly is heard repeatedly by specialists when patients become frustrated that they are not being heard. The reasons are complex and multifactorial and rarely down to a specific doctor – most of whom will be used to dealing with a patient’s health concerns and identifying symptoms.
Part of the problem is that some doctors in primary care may not have the knowledge and experience of dealing with women’s health issues. It is not that they don’t ‘believe’ you – if you have pain then you have pain! More that they may not link particular symptoms with endometriosis. They may also not have easy access to local specialists through the public system and this unfortunately can be very variable across New Zealand depending which is your local District Health Board.
From a practical perspective, if you feel that your voice is not being heard, then consider trying a different Doctor or ask if there is one in the practice who may have an interest in Women’s Health. Even when some women are referred to secondary care and may see a generalist gynaecologist, it can be difficult for them to obtain appropriate investigations and treatment. Our advice is to keep trying, make a diary of your symptoms to take with you, don’t give up hope, utilise the various social media groups and ask Endometriosis NZ for advice, but also keep asking for a specialist opinion if your symptoms do not improve. If you have private insurance you can also consider direct referral to a specialist.
Dr Philip Suisted
Pain bias: The health inequality rarely discussed by Jennifer Billock, BBC
Physician Judgments and the Burden of Chronic Pain, John T Chibnall, Raymond C Tait, PhD, Julie K Gammack, Pain Medicine, Volume 19, Issue 10, October 2018, Pages 1961–1971