Diagnosing endometriosis without surgery

Medically reviewed by Dr. Emilie Côté, OB GYN 

Historically, endometriosis has always been diagnosed through surgery. The most common procedure is a laparoscopy, where a thin telescope connected to a camera is inserted through small cuts in the abdomen to help the gynaecologist visualise the organs and locate lesions.  

The diagnostic surgery is just the first step of the surgery process. Depending on the extent of lesions and scar tissue present, the surgeon can proceed with treatment, which involves using heat to remove the lesions, either through ablation or excision. The endometriosis can be fully treated at this point, incompletely treated, or not treated at all. This depends on the severity and skills of the surgeon.  

Surgery can make a big difference for many patients, by reducing pain and improving their quality of life. However, getting to this point can be challenging. Surgery can be expensive, and finding doctors who specialize in endometriosis treatment may not be easy. Plus, repeated surgeries to remove lesions can lead to the build-up of scar tissue, which increases the risk of bleeding, blood clots, and organ injury.

Some experts argue that laparoscopic surgery should not be used as the only maybe: the only way to diagnose endometriosis? (A test sounds a bit simplistic) diagnostic test. Instead, we’re seeing a push towards clinical diagnosis. This means that your doctor will use your symptoms, physical examination, and imaging results to make an informed assessment about your condition, avoiding surgery.  

We spoke with Dr. Emilie Côté, an NHS-registered Obstetrician and Gynaecologist, who notes  that laparoscopy shouldn't always be the go-to.  

“There is a poor correlation between the severity of symptoms and identifying lesions through surgery. This means that although your symptoms may be very severe, it does not necessarily mean that you have numerous lesions.” 

 In fact, up to 70% of women who have a laparoscopy for chronic pelvic have nothing found when they undergo surgery.  

Plus, there are risks with multiple surgeries. Scar tissue can build up, worsening endometriosis symptoms. Imaging tests, like ultrasounds and MRIs, can provide more information on your condition/diagnosis. But time is needed to dig into all your symptoms and identify the right treatment for you. In the meantime, Dr. Côté recommends starting with hormonal treatments to reduce pain and keep endometriosis from coming back. 

There are advantages and disadvantages to receiving a definite (surgical) diagnosis.  One advantage is that having a confirmed diagnosis can be a huge relief. It can validate your experiences, especially if you've been through years of suffering and doubting yourself. It might even lead to recognition at work or help you plan time off and navigate insurance for additional medical expenses. 

On the other hand, while some people have success with laparoscopy, Dr. Côté warns every person is different, with varying levels of symptoms, lesions, and adhesions. The belief that surgery is always effective unfortunately isn't true for everyone. The new updated ESHRE guidelines (2022) state that if endometriosis can be identified through imaging techniques, this can be used as a diagnosis. Laparoscopy should only be performed if endometriosis cannot be identified through imaging techniques and medical treatments are not effective.   

 Dr. Côté explains that your gynaecologist may recommend it in certain cases.  

• You’re not suitable for or prefer not to use hormonal treatment (i.e., trying to conceive, underlying conditions, side effects).  
• You have bothersome symptoms even after trying hormonal treatments.  
• You have large ovarian cysts or deep endometriosis seen through imaging tests (ultrasound or MRI). 
• You are experiencing infertility.  

This is difficult to determine. According to NICE guidelines, a surgical diagnosis is the only confirmed method to receive a diagnosis for endometriosis. ESHRE guidelines state that endometriosis can be diagnosed without surgery, if enough evidence can be gathered through physical examinations, symptom tracking, and imaging techniques. Your healthcare practitioner will follow these guidelines based on their location (NICE guidelines are used in the UK, and ESHRE guidelines are used in EU countries). While it is true that women and those assigned female at birth will not receive a confirmed diagnosis without surgery, Dr. Côté suspects that other factors have a stronger association with this delay: 

• Presenting symptoms at a young age. These symptoms are more likely to be attributed to generic ‘period pains’ rather than an abnormal menstrual condition, so healthcare providers may not even consider an endometriosis diagnosis until many years later.  
• The time taken for you to present your symptoms to a GP or gynaecologist.  
• Medical gaslighting occurring when your concerns and symptoms are dismissed or ignored by a medical provider.  
• Misdiagnosis happening  when some forms of endometriosis (i.e. rectovaginal endometriosis) presents with symptoms that are shared with gastrointestinal conditions such as Inflammatory Bowel Syndrome (IBS). 

There are several factors that are considered before getting an endometriosis diagnosis. But if you suspect that you may have endometriosis, having a meaningful discussion with your GP is key. We spoke with Dr. Emilie Côté, an OB GYN on what you can do to get an endometriosis diagnosis.

• Prepare to speak to your GP: Read our article on How to speak to your doctor about endometriosis so you are well prepared to have a meaningful conversation.  
• Plan your appointment with Joii App: This app has been designed for women and those who menstruate, with special features for people with menstrual conditions. Logging and tracking your pain and symptoms can be the most effective way to communicate with your doctor about your personal menstrual health. The Joii App identifies patterns based on your own data, providing you with detailed insight into your menstrual health.  

• Request physical exams: Dr. Côté recommends that in your first appointment, request that your physician perform a bimanual examination where they feel your abdomen externally with one hand and examine your cervix vaginally with two fingers. This can help detect any stiffness and tenderness. If they can't do it, ask for a referral to a specialist gynaecologist. 
• Ask for imaging tests: Imaging tests like ultrasounds and MRIs can identify deep lesions and ovarian cysts, ruling out other conditions. Keep in mind, they can't definitively diagnose endometriosis alone, but they provide valuable information for surgeons to plan future treatment. 
• Start with medication: You should leave your appointment with a treatment plan. If you prefer to use pharmacological drugs, this could start with over-the-counter NSAIDs (i.e. ibuprofen or mefenamic acid). It could also involve hormonal treatments such as a contraceptive pill or a intrauterine device (e.g. Mirena coil). 
• Request a follow-up appointment: Make sure that you and your doctor have made a clear plan for follow-up, especially if you do not have a definitive diagnosis. If you are trying medication, you should know when this will be reviewed, and what will happen if it does not control your symptoms.