When having suspected endometriosis investigated, there are a few things a doctor will look into.
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Endometriosis has a lot of overlap with other conditions, so a few different investigations are needed. That will include your family history, asking about your menstrual cycle and ruling out other possible diagnoses such as IBS or adenomyosis.
They also may do a manual exam to look for cysts or scar tissue, but not finding these doesn’t rule out endometriosis. Other investigations include ultrasounds, MRIs and laparoscopy. Laparoscopy is a key hole surgery where a small sample of tissue is taken and tested.
This process currently takes very long and 58% of patients visited the GP over 10 times before getting their diagnosis.
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Trans vaginal ultrasound
Investigation
How can you engage with a doctor?
Transvaginal ultrasounds are often a part of the diagnostic journey of endometriosis. Many NHS trusts refuse to do a transvaginal ultrasound on patients if they have never had penis-in-vagina sex. This is against the advice of the British Medical Ultrasound Society. When a patient is refused a transvaginal ultrasound, they are often given instead an abdominal or transrectal ultrasound.
Many hospitals cited the risk of breaking the hymen as a reason for not offering the test - even though the hymen can be damaged by things other than penises, and can also be unharmed by vaginal penetration.
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Journalist Sophia Smith Galer broke the story for VICE after learning about patients who had been refused transvaginal ultrasounds due to their sexual history.
After years of symptoms, going to a doctor can be daunting. Bringing as much information as you have about your body, past health experiences, tests and treatments will be hugely helpful for everyone involved in the process.
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keep a diary of your symptoms - this could be on paper or in a menstrual tracking app
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keep a folder of your patient notes, scans and relevant research to bring to appointments
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keep notes of what you've discussed with medical professionals
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ask for a referral to an endometriosis specialist centre
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if your symptoms are dismissed, stand up for yourself or bring someone to advocate for you
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get a second opinion
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make a complaint if a medical professional mistreats you