The medical pathway

The journey from recognising your symptoms, to seeking help, to getting answers can be a long one.

We want to show what that process might look like so you can have an easy and efficient time as possible.

There is a lot to be learned from the medical sector, but the sector must also learn from patients and patient advocates - 46% of endometriosis patients found their GP unhelpful. A third of healthcare providers in America couldn’t even name 3 endometriosis symptoms.

There is still so much to be done: both internally by combatting discrimination and externally by resisting the privatisation and defunding of the NHS. Many doctors share frustrations about how difficult these care journeys can be. Working collaboratively together and amplifying marginalised voices will help improve the situation for everyone.

Investigation

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Investigation 〰️

When having suspected endometriosis investigated, there are a few things a doctor will look into. 

​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.

Journalist Sophia Smith Galer broke the story for VICE after learning about patients who had been refused transvaginal ultrasounds due to their sexual history. 

Transvaginal Ultrasound

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.

Journalist Sophia Smith Galer broke the story for VICE after learning about patients who had been refused transvaginal ultrasounds due to their sexual history.

Image available at: nhs.uk/tests-and-treatments/ ultrasound-scan

How can you engage with a doctor?

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. 

  • keep a diary of your symptoms - this could be on paper or in a menstrual tracking app

  • keep a folder of your patient notes, scans and relevant research to bring to appointments

  • keep notes of what you've discussed with medical professionals 

  • ask for a referral to an endometriosis specialist centre

  • if your symptoms are dismissed, stand up for yourself or bring someone to advocate for you

  • get a second opinion

  • make a complaint if a medical professional mistreats you

Diagnosis

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Diagnosis 〰️

What does a diagnosis mean for you? 

​Getting a diagnosis isn’t simple. And the more marginalised you are, the more difficult it can be. It takes on average 8 years to get a diagnoisis of endometriosis in the UK.

​For some it means finally being able to access treatment, knowing the words to find help, learning how to work with your body instead of against it, getting your work or school to provide accommodations, or accessing a community. For some, it’s validation - you weren’t making it up and now you have proof.

It’s important to remember that chronic menstrual pain is a valid diagnosis in itself and so even if endometriosis isn’t found, we should still take them seriously. Also, endometriosis is sometimes not the sole cause of pain and therefore if treatments that target the endometriosis don’t remove all the pain, it is worth thinking about other factors too.

As of yet there is no cure for endometriosis.

Management

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Management 〰️

Healthcare is about more than getting a diagnosis - patients need ongoing support and management is often a life-long journey.

And yet 72% of endometriosis patients were not given any written information when diagnosed.

No plan is one size fits all and it all depends on your priorities: be that relieving specific symptoms - physical or mental, your career, caring responsibilities, and whether you want to conceive or not. The right treatment for you might vary at different points in your life.

What do you use to manage endo?

Surgery

Surgery can be used to remove endometriomas and cysts, and divide adhesions - this is often done at the same time as the diagnostic laparoscopy. 

 There are different methods including the use of scissors, lasers or heat. Ablation is the removal of surface lesions, excision is cutting them out at the root. Surgery can also be used to improve fertility.

Self care

Self care is all about prioritising your well-being. There are lots of ways of doing it - from little every day actions to big undertakings. 

For some people, that might look like drinking enough water or spending time in nature, for others it may be standing up for your employment rights or finding a doctor or therapist who listens.

Hormones

Pain relief

TENS machine: a machine which relieves pain by sending small electrical signals through the skin.

Medicinal cannabis: Medicinal cannabis is legal in the UK, but only in very specific circumstances. NHS England does not currently allow its use for chronic pain.

Mental Health

81% of patients said endometriosis has impacted their mental health negatively or very negatively. 

Having endometriosis can come with lots of feelings of depression, anxiety, loneliness, guilt, low self-esteem, trauma. Help is out there.

Sex

Physio

Community

Why the delay?

What causes the delay in getting an endometriosis diagnosis?

Endometriosis is still not well understood 

  • Symptoms are very variable and overlap with other diseases

  • It often coexists with other chronic pain and inflammatory conditions

  • Lack of an accessible and definitive non-invasive diagnostic technique

  • The normalisation of pain in women and people with uteruses

  • Low awareness of the disease among the public and medical professionals

  • Institutional misogyny, racism, ableism, queerphobia and transphobia

  • Being misdiagnosed such as with IBS or anxiety 

  • Long waiting times for surgery

  • Barriers to healthcare including accessibility, wealth and discrimination 

  • Defunding and privatisation of the NHS

  • What is Endometriosis?

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  • Normal or not normal?

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  • The medical pathway

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  • What next?

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  • Let's talk about it

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  • Making the unknown known

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