Endometriosis can have a range of symptoms that are commonly mistaken for other conditions (we’ll speak more about this later), so knowing if and when to get checked can often feel overwhelming.
The reality is for many women and those assigned female at birth it can take on average 7.5 years to receive a diagnosis. This can be a result of those tricky symptoms, so it’s best to book an appointment as soon as possible.
But alas, you find yourself with a doctor’s appointment and you’re ready to explain how you might have endometriosis. You know everything you want to say in your head. You hear your name be called, take a deep breath, and follow your doctor into their office. You sit, look up, and…
Every single thing you want to say is forgotten. You might feel disheartened or even angry with yourself. Now what? Book another appointment – but this time, let’s be extra prepared.
Natracare’s Marketing Manager Jess was recently diagnosed with endometriosis. This comes after three years of medical appointments and advocating for her own healthcare.
She tells us more about how she spoke up for her health and prepared herself for these difficult conversations.
What symptoms did you experience which made you reach out to the doctor?
I was experiencing a range of symptoms that I thought could be a sign of endometriosis, such as:
- Irregular bleeding – I bleed for around 2-3 weeks every month on and off
- Heavy periods
- Debilitating pain – typically in my abdomen, back, and thighs. This sort of pain doesn’t get any better with over-the-counter painkillers or a hot water bottle
- Extreme bloating
- Pain when going to the toilet
- Pain during sex
- Bleeding after sex
- Heavy feeling in the pelvic region
- Iron deficiency
When investigating these symptoms, I was checked for a range of conditions other than endometriosis. For one, endometriosis is often commonly mistaken for polycystic ovary syndrome (PCOS) as they share irregularities in cycles, bloating and other symptoms.
Previous investigations also included the likes of Von Willebrand Disease, a blood clotting disorder that causes heavy mensuration for people with periods, Human papillomavirus (HPV) or irritable bowel syndrome (IBS). I was even told I could have a potential ‘disorder’ of menstruation – although I am unsure what that actually might mean!
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How did you come equipped for your appointment?
Tracking, tracking, and some more tracking. I knew having a period shouldn’t be this painful and disruptive to my life. I looked into the patterns of my symptoms – did the pain change around my period and ovulation? Having a visual way of presenting your abnormal blood loss is useful. Remember to bring all this information with you.
A 2021 study revealed that 23% of women and people with gynae organs felt ‘not listened to’ during their medical appointments about their reproductive health. There is a clear, continuous systemic problem for women and those assigned female at birth having their issues diminished or not taken seriously.
Although we should be listened to regardless of the amount of information we bring, having well-informed research to reinforce what I was saying made all the difference. It also gave me the confidence to stand up for myself. If you think you have endometriosis, say it!
It was also important to show I was already trying to relieve my symptoms. I had tried different medications, heat therapies, hormonal contraception, the lot! So, I explained what was working and what wasn’t so we could get to the bottom of that, too.
Finally, be transparent about your family history (if you’re able to access this information) that could relate to your condition. Ask relatives if they’ve experienced any abdominal/gynaecological surgeries, past pregnancies, births or miscarriages, or if anyone in your family suffers from similar symptoms. This can be useful supporting evidence to support a potential diagnosis.
What top 3 tips would you give someone looking to get the most out of their appointment?
- Gather evidence using the information above – the more, the merrier! It’s even better if you can give it to your doctor before your appointment.
- Clearly state what you’re looking to get out of your appointment. Would you like further investigations, advice, pain relief, or a referral? Let the GP know so that they can help the best they can.
- Write everything down! You may think you can remember all this important information you’re being told, but there is a big chance you’ll forget something. If you’d rather, ask your doctor if you can take an audio recording – this will help you to remember what has been said and follow up on any actions in the future.
If you’re worried about the structure of your appointment, Endometriosis UK have a great Consultation Questionnaire that can help.
Since having your appointments, have there been any resources you have used that have been helpful?
Books: I highly recommend Endometriosis: The Expert’s Guide to Treat, Manage and Live Well with Your Symptoms, Period Repair Manual: Natural Treatment for Better Hormones and Better Periods, Beating Endo: A Patient’s Treatment Plan for Endometriosis.
Charities: Endometriosis UK‘s website provides lots of resources and advice.
Online Groups: There are plenty of online Facebook groups where people share support, advice and ask questions.
Instagram influencers: There are many people out there also suffering from the same symptoms as a result of this debilitating condition. Many also take to their social media platforms to share tips for symptom management and much more.
With what you know now, if you could give yourself one piece of advice to yourself at the start of your journey, what would it be?
I’d tell myself that it’s not all in my head, that my pain is real and to keep fighting for adequate healthcare and a diagnosis, it’ll be worth it in the end!
When should I get support?
It is important to reach out to your GP or healthcare professional if you are experiencing symptoms. A big thank you to Jess for sharing her journey to an endometriosis diagnosis, we hope this offers some helpful tips if you’re seeking your own diagnosis.
