Could I have endometriosis?

Getting a diagnosis of endometriosis can sometimes be a frustrating experience. The disease appears differently in different people and the symptoms can be mistaken for other conditions. It may be useful to track your symptoms to show your doctor how you are affected.

In Wales, a diagnosis pathway is being implemented that informs how your doctor should proceed in search of a diagnosis.

Because endometriosis affects people in different ways, the diagnosis pathway contains a number of steps towards a diagnosis, including pelvic examination and ultrasound.

If any of these tests come back normal (meaning no endometriosis is found) that does not mean for certain that you don’t have endometriosis. That is because endometriosis is not always visible on scans and your doctor may suggest other ways of diagnosing it.

The only way to know for sure that you don’t have endometriosis is with a diagnostic laparoscopy. This is an operation under general anaesthetic (person is asleep during the operation). The gynaecologist will make some small cuts in the abdomen (belly) and then inflate it with special gas to see what’s going on in the abdomen more clearly. Instruments, including a camera, will be inserted through the cuts, to see and treat any disease found. The surgeon may also remove pieces of tissue to send away to a laboratory to confirm the diagnosis.

Before having this surgery, your doctor might be able to make a probable diagnosis of endometriosis based on your symptoms. You can use the Endometriosis Cymru Symptom Tracker to get a profile of your symptoms. The doctor may also use scans like a trans-vaginal ultrasound scan to help diagnose but these scans are not conclusive.

Sometimes, scans like these will show up endometrioma cysts in the ovaries. Endometrioma cysts are often a sign of more severe disease. Your surgeon might offer you an operation to remove the cyst and treat any other areas affected by endometriosis. Because endometrioma cysts are typically associated with more severe disease, these operations should be performed by an endometriosis specialist surgeon at a tertiary centre. Tertiary specialist centres provide a multi-disciplinary team, including bowel surgeons, urologists, pain management specialists, and endometriosis nurses to deal with disease that affects different organs in the body.

Endometriosis is complex, and it can show up in many forms and locations in the body, making it tricky to diagnose. It also takes specialist expertise to be able to spot endometriosis and adhesions on scans.

Patient Perspectives

Our patient perspectives are taken from interviews with endometriosis patients and the 2018 survey

  • I first went to the doctor about it in 2006. I'd been suffering a lot longer than that, but that was the point I got to where I knew I had to do something about the constant pain that I was in. I'd suffered with pain for, I would say, two or three years before that but hadn’t gone to the doctor. I'd always had horrendous periods and so never thought that it was abnormal.
  • When I got told, 'This is what's going on with you,' the relief was brilliant because I thought well, now I know it's not in my head.
  • Prior to diagnosis I just felt incredibly frustrated, hopeless, quite helpless at times, not really knowing what was going on with my body, not being able to make it better.

Pathway Perspective

Your doctor will look for known symptoms and follow the diagnosis pathway. A pain and symptom diary can aid the discussions.