Endometriosis is a condition that can affect anyone that has a period. It can often be very painful and should not be ignored.

Endometriosis is when tissue the same as the lining of the uterus, begins to grow outside the uterus. This can be around the pelvis, ovaries, fallopian tubes, bladder or bowel. Sometimes it can happen somewhere else in the body.

When you have your period, this tissue acts as it normally would during a period - bleeding with each cycle into your body, causing inflammation and pain.

If the endometriosis involves the ovaries, cysts known as endometriomas or ‘chocolate cysts,’ may form. Other small lumps can form, called endometrial nodules. These can be very sore.

In New Zealand, it is estimated at least 120,000 girls and women have endometriosis, but this figure could be much higher, as a diagnosis is often difficult. Some women may not have any problems, while others have a range of painful or irritating symptoms.

What are the causes of endometriosis?

The exact cause of endometriosis is still not known. Research suggests there are a variety of contributing factors.

What we do know, is that you are more at risk of developing endometriosis if someone in your family has endometriosis (mother, sister, aunty). They may not have a diagnosis, so it would be helpful to ask if they have any symptoms.

What are the symptoms of endometriosis?

Pain

• Pain and cramping during your period in your pelvis, lower back and tummy. This is the most common symptom.
• Pain during or after sex.
• Pain going to the toilet during your period.

Infertility

• Endometriosis can sometimes be diagnosed when a woman is having difficulty becoming pregnant.

Other symptoms:

• Tiredness
• Problems with your bowels, such as bloating, diarrhoea or constipation. This might have been diagnosed as Irritable Bowel Syndrome (IBS).
• Problems with your bladder.
• If you have been diagnosed with Pelvic Inflammatory Disease (PID), but have other symptoms that sound like endometriosis.

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

If you’re not sure if what you are experiencing is endometriosis, or simply what is normal for a period, see a doctor. Either way, you should not be putting up with severe period pain, and you should ask for help.

You should also see a doctor if:

• If you have suffered from painful periods in the past and have gone on the pill to control it and it hasn’t helped.
• If your period pain is becoming increasingly worse each cycle.
• If you are having trouble getting pregnant.

How do I get a diagnosis?

First your doctor might do a pelvic exam to see if you have any tenderness or cysts, possibly followed by a scan. This won’t lead to a definite diagnosis, but it will help decide the next steps.

Endometriosis is diagnosed by laparoscopy, where a small tube is inserted into the tummy to see the pelvis area. Laparoscopic surgery is done under general anaesthetic. The doctor can see the areas of endometriosis and usually can remove them.

Endometriosis is difficult to diagnose. If you’re not getting the answers or the help you think you need from your doctor, make an appointment to see another one. Family Planning doctors are specialists in women’s reproductive health, and are a great place to start.

What treatment is available?

Endometriosis can be treated and managed, but it can’t be cured.

Treatment for endometriosis depends on a range of factors, such as how severe your symptoms are, where it is, and whether you plan to still have children. Your doctor will help you decide what is best for you.

Laparoscopic surgery can remove the endometriosis.

There are also medical treatments available. Some options include:

• The combined oral contraceptive pill can relieve symptoms if you take it continuously (by missing the inactive pills). 
• Other hormonal contraceptives such as the vaginal ring or Depo Provera might be offered. 
• An intra uterine device, such as Mirena, can treat heavy periods and reduce pain. 
• Pain medication, either a prescription from your doctor, or over the counter medication. Talk to your doctor about what is right for you.

Getting help

If you think you may have endometriosis, make an appointment with your local doctor, a gynaecologist, or with a Family Planning doctor.

Before you go, it might be helpful to think about and write down what you’re experiencing. For example:

• What are your symptoms, and how severe are they? 
• How often do you have them?
• How long you’ve been having them?
• Do you think they are linked to your monthly cycle? 
• Does anything make your symptoms better, or worse?

Your doctor will probably ask you questions like this, and it can be easier to think of the answers at home, rather than the doctor’s office!

More information

• Endometriosis New Zealand 
• See 10 endometriosis myths busted