Endometriosis, Symptoms and Diagnosis
This information aims to provide patients with an overview of the symptoms and diagnosis of endometriosis.
Endometriosis is a condition in which small pieces of endometrium (that is, the lining of the uterus) are found in locations outside the uterus. It is a long term condition and the length of time to diagnosis varies between countries. In the UK the diagnostic delay is estimated to be from six to seven years. This delay occurs mainly in general practice. ( Primary Care )
Endometriosis is present in 70% of adolescents and young women with pelvic pain that does not respond to oral contraceptives or anti-inflammatory medications. However, it is rarely considered as a possible diagnosis in adolescents. It is wrongly assumed that endometriosis needs many years to develop after the start of menstrual periods and that early symptoms, in particular pain, may be normal at this age. (Candiani M et al, 2010)
Endometriosis may be suspected with some of the following symptoms:
- Dysmenorrhoea (painful periods)
- Pelvic pain (which may not be during a period)
- Dyspareunia (painful intercourse/sex)
- Lower back pain
- Ovulation pain
- Painful bowel movements
- Heavy bleeding
- Persistent fatigue
Endometriosis can have different forms ( growths, nodules ( an area of hard tissue ) and/or cysts ) that can affect pain. Some women have pelvic pain which can be caused by pressure from an endometrioma ( endometriotic chocolate cyst ) or adhesions ( fibrous bands that form between tissue and organs ) (Chapron et al 2012). Pain can be triggered by certain positions such as sitting and specific movements or activities. Nodules can occur in the Pouch of Douglas ( an area between the rectum and the back of the uterus ) uterosacral ligaments or rectovaginal septum ( a thin structure separating the vagina from the rectum ). These may cause excrutiating pain. They may be overlooked. Symptoms linked with bowel and bladder endometriosis are usually not well recognized. These may be diagnosed as irritable bowel syndrome (IBS) or bladder pain syndrome (BPS/IC). Bowel symptoms may include abdominal pain and spasms, painful bowel movements, constipation, loose stools, nausea and vomiting. Bladder symptoms include pain in the bladder region, frequent urination, urgency and burning when urinating.
The range and severity of symptoms often increase as the disease progresses, although they do not progress in all patients.
Endometriosis may especially be suspected if the symptoms are:
- Not helped by taking painkillers such as paracetamol,not helped by taking non-steroidal anti-inflammatory drugs such as mefanamic acid
- Not helped by taking the oral contraceptive pill
- So painful that you struggle to carry out your normal activities
- Occurring at the same time every month
- Getting worse with time
Adhesions are frequently associated with endometriosis and according to the type and location of adhesions, the pain can range from mild to incapacitating. Pain can be due to tension on deposits of endometriosis, pressure from an endometrioma ( endometrial or chocolate cyst ), or from adhesions pulling on organs. Pain may be triggered by certain positions such as sitting and certain movements or activities.
One third of young women consulted GP's six or more times with a main symptom before diagnosis. In our opinion, having made the decision to seek medical advice, it is important that you receive reassurance as well as a possible explanation for your symptoms. If your doctor appears unsympathetic or dismisses your symptoms, you need to be assertive and tell the doctor if you think it could be endometriosis.
There are a range of methods that can be used to assess whether a women has endometriosis but the only reliable way to confirm the presence of the disease is by a procedure called a laparoscopy. This is a surgical procedure using a laparoscope via a small incision in the abdomen. It is sometimes called "keyhole surgery". A laparoscopy carries a 3% risk of minor complications such as nausea or shoulder-tip pain and a risk of major complications such as bowel perforation of between one and two for each 1,000 procedures. (RCOG Guideline) In some cases endometriosis may be removed during such a procedure. In this case a sample of the removed tissue should be examined in the pathology laboratory. If you are having a laparoscopy we suggest that you ask if endometriosis is found whether it will be treated at the same time. The report of the surgery and the pathology report can be very useful for you and the specialists you may see in the future.
Ultrasound is frequently used to investigate symptoms but it is not helpful in diagnosing the majority of women because it generally only shows endometriotic cysts due to endometriosis and not the other forms. A rectal ultrasound scan may show endometriosis of the rectovaginal area. An MRI scan (magnetic resonance imaging) of the pelvis can also show deep endometriosis and adenomyosis.
Adenomyosis inside the uterus is not visible during a diagnostic laparoscopy.
A recent study in Australia has identified a high number of nerve fibres in the endometrium of women with endometriosis in a double-blind study. ( Al-Jefout,, 2009) ) A study has been proposed to investigate non-invasive tests for the diagnosis of endometriosis. (Nisenblat V,2012)
Some gynaecologists have more knowledge of and experience in the area of endometriosis than others. You may want to find out about the situation regarding referral in your area.
Issue date: February 2012
Review date: February 2015
Article: Endometriosis is simple
Ask questions about endometriosis here
Endometriosis and Pelvic Pain by Dr Susan Evans in 3 parts (please follow link below)
Part 1 - What it is, the symptoms and how it is diagnosed, Part 2 - Painful periods, sharp, stabbing pains ,
Part 3 - Irritable bowel syndrome, headaches
Please Click here
To read about the causes of Endometriosis click here