Do I have endometriosis? Symptoms, diagnosis and treatment

Endometriosis is very common with around 1 in 10 women suffering from this condition worldwide and about 1.5 million in the UK. It’s a disorder in which endometrial tissue starts to grow outside of the uterus, commonly affecting the ovaries, fallopian tubes and the tissue lining your pelvis. This misplaced tissue gets affected by the hormonal changes in your menstrual cycle and subsequently becomes inflamed and painful.

Mr Kirana Arambage is a consultant gynaecologist and specialist in advanced gynaecological endoscopy based at The John Radcliffe Hospital and at The Manor Hospital in Oxford where he works at BSGE-accredited endometriosis centres. We asked him to describe the first signs and symptoms of endometriosis and the various stages of the condition to help women better understand this common problem.

What are the symptoms of endometriosis?

The symptoms of endometriosis vary. Some women will experience mild symptoms, yet others will have moderate to severe symptoms. In accordance with the NICE guidelines, there are typically six main signs and symptoms of the disease:

1. Significant period pain or cramps
2. Pain on opening the bowels during periods
3. Bladder pain when urinating during periods
4. Non-cyclical pelvic pain which may or may not be related to physical activity
5. Painful sexual intercourse
6. A history of infertility

If you have any of these symptoms for a significant period and they are impacting your work and day-to-day life, you should be taking it seriously. At least one of the six symptoms need to be reported to your GP.

Contrary to popular belief, endometriosis is not an older women’s disease and cannot be cured by pregnancy. It can affect any woman at any age and no woman should have to ‘put up with the pain’. Different ideologies have circulated through society, and some of which believe that it is normal for women to experience agonising pain, especially during periods; however, this is not normal, and you should see your doctor if you are displaying this or any of the above symptoms.

How do I know it's not just regular period pain?

If your period pain is not impacting your daily life and work and taking pain medications relieves you of your symptoms, then it’s likely not endometriosis. However, it could be endometriosis if you are suffering from severe pain that:

• occurs frequently
• lasts a long time
• doesn’t respond to pain medications
• is impacting your life, social, work and relationships

Heavy periods may be associated with adenomyosis, where endometriosis tissue is present within the wall of the womb.

Keep a pain diary

To evaluate your symptoms and better communicate them to your doctor, you should make a ‘pain diary’ to record your symptoms over months, or even years if necessary. If your pain is associated with your periods, you should try to measure and rank the pain on a scale of 1 - 10 whenever you experience it.

This self-assessment will be helpful to both you and your GP to make a diagnosis and better manage your symptoms. You can find a pain diary template from Endometriosis UK.

How is endometriosis diagnosed?

The diagnosis depends on your clinical symptoms. A doctor may use a diagnostic laparoscopy - a minimally invasive surgical procedure to look inside you; however, it may be more appropriate to attempt to manage your symptoms initially.

You doctor might also perform one or more of the following tests:

• Physical exam
• Ultrasound scan
• MRI scan

Ultrasound and MRI scans will be able to diagnose endometriosis lesions in the womb (adenomyosis) and the ovaries (endometrioma, also known as ‘chocolate cysts’). These tests are important as endometriosis can impact the other organs in the pelvis like the rectosigmoid colon, bladder and uterus.

It is important to keep in mind that the average diagnosis time of endometriosis is between 7-12 years from the onset of the first symptoms. This is why it is important to keep a pain calendar and report your symptoms in as much detail as possible to avoid any unnecessary delays.

Are there different stages of endometriosis?

Endometriosis has four different stages of severity: minimal, mild, moderate and severe.

The severity of your pain doesn’t indicate the degree or stage of the condition. You may have a mild form of the disease yet experience agonizing pain, and conversely, some may have severe endometriosis but only experience mild symptoms.

More importantly, we need to find out if patients who have more debilitating symptoms and severity of the disease involve other organs like the urethritis, bowel and pelvic nerves. If the disease is infiltrating the urethra, then it can block urine from the kidney to the bladder and therefore puts pressure on the kidney. This pressure can result in moderate kidney disfunction to complete loss of function, which may not be reversible.

In moderate to severe endometriosis, some women have bowel symptoms, such as bleeding from the back passage associated with their periods and may result in the condition infiltrating through the wall of the bowel. This may require surgical treatment for bowel disease.

In other cases, the condition can infiltrate into the vagina and the pelvic nerves, leading to painful sex and referred pain; however, this is rare.

Can the endometriosis affect the organs outside the pelvis?

Yes, of course. It can be located in upper abdominal organs such as liver, diaphragm, small and large intestines and appendix. If patients suffer from cyclical shoulder pain and right upper quadrant pain, it might be due to endometriosis.

It is also found close to abdominal wall scars (e.g. previous Caesarean section, port sites, etc), episiotomy scars, chest/thorax (cyclical chest pain and coughing of blood during periods) and close to nerve routes of the pelvis.

How is endometriosis treated?

There are many treatments to manage multiple pelvic pain symptoms, heavy periods and fertility issues related to this condition.

At a primary care level, you can be offered different types of pain relief tablets, multiple hormonal treatments involving tablets and injections depending on your circumstance and side-effects.

If the disease is in a severe stage, you might benefit from being referred to a gynaecologist, or more specifically to a BSCG-accredited endometriosis centre in the UK. These centres take on a multidisciplined approach for patients and the team is usually formed of an accredited gynaecology surgeon, colorectal surgeon, some are urologists, pain physicians, endometriosis nurses and pelvic pain physiotherapists.

Depending on symptom severity, your age and whether you have had children or not, treatments may involve surgery, pelvic pain physiotherapy, seeing by chronic pelvic pain (CPP) team and psychotherapy.

It’s very important to provide the right treatment. The treatments are always individualised to the patient’s wishes aiming to restore functionality and quality of life.

Please see the latest BSGE landmark paper published on BMJ.

If you would like to book an appointment with Mr Kirana Arambage, go to his Top Doctors profile and check his availability.