Getting an endometriosis diagnosis

Endometriosis is a condition of the female reproductive system. It happens when tissue, like the lining of the womb (endometrium), grows in other places in the body, such as in the ovaries, fallopian tubes or in the rectum (final part of your large intestine).

This tissue can cause severe pain if you have endometriosis along with other symptoms such as heavy bleeding, sickness and tiredness.¹

Endometriosis can cause a lot of unpleasant symptoms, including heavy period bleeding and severe pain. You may also:

• Have feelings of depression and isolation
• Find it hard to perform well at work
• Lose your sex drive
• Find it difficult to get pregnant
• Experience pain when going to the toilet
• Have pain when you are not on your period
• Experience pain during or after sex
• Have unusual bleeding, like bleeding during ovulation (your fertile window).^1,2

Endometriosis tends to be diagnosed by having a procedure done called a laparoscopy. A laparoscopy is when a small cut is made in your tummy and a camera is used to look for tissue growth outside of the womb. It happens in a hospital and usually is done within a few hours.

Sometimes, if the doctor finds evidence of endometriosis, they may remove some of the tissue. This will mean your procedure will take longer.

When you go for your laparoscopy, you should take a small overnight bag, just in case you have to stay the night. You may feel some discomfort after the procedure as the wound heals. You shouldn’t drive for 24 hours after your procedure.³

Endometriosis is still not a well understood condition, so it can take a long time to reach a diagnosis. There are many reasons why this may be, for example:

• You may only find out when you are trying to have a baby and are experiencing fertility issues
• You may be misdiagnosed as a lot of endometriosis symptoms are the same as other conditions, like IBS
• You may have been told you have normal period symptomsby your doctor.

If you suspect you have endometriosis, it is important you speak to your doctor and explain why you think you have the condition. If you have already spoken to the doctor and feel like you have not received the correct diagnosis, you can always go back or get a second opinion.

Before your appointment, you may want to think of a list of points or questions you want to address and write them down before the appointment. You can write notes during your appointment, take someone with you to write notes or ask your GP if they are happy for you to record the conversation so that you don’t miss anything.

Talking about your experience can be difficult. You may be living with pain or discomfort. It’s okay to feel frustrated, nervous or upset when talking about it.

To make the most of your GP appointment, you should prepare ahead of time. Keeping track of your symptoms will help you to get the most out of your appointment and give them a full picture of your lived experience.

Even if you feel worried or emotional, you’ll have your notes to rely on as you discuss your symptoms.

This method helps show the doctor exactly what you have been dealing with and how long for. It is also fine to tell the doctor if you suspect that you have endometriosis.

You may also find it helpful to take someone close to you to your appointment. They will be able to advocate for you and help the doctor understand your symptoms. They may also be able to help take notes of what the doctor says and ask any questions you may not have thought of before the appointment.

If you think you have been misdiagnosed, you can always ask for a second opinion. You can also ask to be referred to a specialist in the field (gynaecologist). If you want to speak to a gynaecologist you will have to meet a set of criteria.⁴

This includes:

• Having severe, persistent or recurring symptoms
• Having pelvic signs of endometriosis, such as pain or tissue growth
• Having had treatment that has not worked for your symptoms.⁵

If you are not referred to a gynaecologist, keep a diary of your symptoms and review your symptoms with your GP. Everyone has a right to treatment so if you have tried what your doctor has recommended and it hasn’t worked, you can go back and get further tests.

Symptoms of endometriosis can be unbearable at times. If you need help managing pain while you wait for a diagnosis, you can try some at-home remedies which may help. These include:

• Taking paracetamol or other painkillers
• Doing gentle exercise like yoga, going for a walk or meditation
• Try heat treatment, such as taking a warm bath or have a hot water bottle
• TENs machine treatment. This is an alternative to pain killers where a small device delivers electrodes to your painful area. It works by blocking pain messages in your nerves or helps to release endorphins
• Taking the oral contraceptive pill.^6,7

Once a diagnosis has been confirmed by your doctor, you will receive different treatment options depending on the severity of the condition. You may be able to manage symptoms on the contraceptive pill alone. More severe cases may require surgery to remove some of the excess tissue.⁷