If I'm honest, I've dealt with my fair share of dickhead doctors over the years. Some haven't taken me seriously, some have gaslighted me into thinking it's all in my head and one didn't feel it necessary to tell me he suspected I had endometriosis. Don't get me wrong, not all doctors are morons when it comes to dealing with endometriosis but for a lot of us the journey to diagnosis and getting ongoing support can be an uphill battle.
What's really important is that you advocate for yourself because nobody knows your body better than you do.
I think it's safe to say that endometriosis and doctors don't have the best relationship. And whilst things are improving (albeit very slowly) it's still commonplace for individuals to find themselves in a negative situation when dealing with doctors throughout their endometriosis journey.
Historically, those of us with ovaries are led to believe that periods can be heavy and painful but we've just gotta suck it up. Any menstrual health issues that flag up around the time of puberty are put down to hormones and according to Moen (2017), there are barely any mentions of endometriosis in paediatric textbooks.
Endometriosis just isn't on the radar for some doctors.
But we're programmed to trust our doctor, especially if they've always be right with everything else. So when we book an appointment to discuss that we're having menstrual health problems, we trust them when they recommend to us to go on the contraceptive pill (the most common response to period issues). Doctors are supposed to be trustworthy. They're supposed to know all the answers to medical problems but when endometriosis is barely mentioned during their medical training unless they make the decision to specifically train in gynaecology, you start to understand why doctors often don't think of it (Norman, 2018).
Combine this with the fact that endometriosis can present itself with symptoms that are common with other medical issues (such as IBS, polycystic ovaries or hypothyroidism) and it's no wonder it takes an average of 7.5 years to be diagnosed; it's often considered the last cause after everything else has been ruled out.
So my hope is that I can provide you with some suggestions and tactics should you ever have to deal with a doctor who isn't the best advocate for your health; whether that's because they don't take you seriously, don't believe you, don't listen, make you think it's all in your head or because you disagree with their medical advice... The list is endless.
Plus, you know, some doctors really are just dickheads.
All the advice below is my personal guidance and is relevant to all stages of your endometriosis journey.
Make and take a diary to your appointments: Whether this be on your phone or on paper, keep notes on your health. When you find you bloat and how long it lasts for, what the symptoms of your period are, how your pain feels. This means you're much more likely to go into the doctor's office prepared and able to state your concerns about your health. There's nothing worse than sitting down and forgetting everything you had planned to say! Having this evidence gives your doctor a clearer picture of what is happening in your body and allows you to talk objectively about how you want to proceed.
You are entitled to a second (or third, fourth, fifth...) opinion: This applies at any point of your endometriosis journey and one of the most important things you can do in terms of advocating for your own health. If, for whatever reason, you don't trust or agree with what your doctor is saying, you have the right to ask for another opinion. You don't have to tell your doctor if you don't feel comfortable to do so but you're within your rights to request (and refuse) to see a different or specific doctor (you can also request to see a female or male doctor depending on what would make you more comfortable) when making another appointment. If you are happy to, then tell them 'thank you for your time, however, I disagree with your opinion and therefore will be asking for a second one.'
Ask for a referral: Again, remember that your doctor isn't a specialist when it comes to reproductive and menstrual health. As above, you are within your rights to ask to be referred to a gynaecologist at any point in your journey. Speaking from experience, prior to my diagnosis I went through the motions with my doctor before a referral was made as I thought that was how it worked. However, when my symptoms came back last year, I booked a doctor's appointment and stated that I wanted to be referred to my gynaecologist as I believed my endometriosis had grown back; I didn't give them room to negotiate.
Request time to process: Going through the motions of any diagnostic journey can be overwhelming and you might need time to process what has been said as well as doing your own research. Hopefully your doctor will suggest taking the time to go over the information but if this doesn't happen; ask; 'Thank you for the information, however I would like to go away and consider what is best before I make a decision on how to go forward...'
You are entitled to a chaperone: Unfortunately having any reproductive health issues means examinations. If you're not offered the opportunity to have a chaperone in the room and you think you'd like one, ask. I've had my mum sit the other side of the curtain just to keep me calm, other times, I've requested a nurse to hold my hand and sometimes a chaperone will automatically be present in the form of a nurse who is assisting.
Use the complaint system: If you've had to deal with a dickhead doctor and are not happy about it, please use the complaint system that your doctor's surgery has in place. Most practices have in place a complaints box but you can request to speak to someone in person. You are entitled to have your complaint heard and dealt with. If you feel that it is not dealt with accordingly, you can refer it to a higher authority which will be different depending where in the world you reside.
On a final note, I'm well aware that there are some amazing medical professions who will do everything in their power to help those of us with endometriosis and I'm so thankful for that. My only hope is that you never have to use this guide but if you do, I hope it's useful.
References:
Moen, M. (2017) Endometriosis, an everlasting challenge. Acta Obstetricia et Gynecologica Scandinavica. [Online] 96, 783–786. Available from: https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1111/aogs.13148 [Accessed 6 August 2020]
Norman, A. (2018) Ask Me About My Uterus. New York, Bold Type Books.
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