Endometriosis: what is it and how to treat it?

It’s a common issue that affects around 1 in 10 British women of reproductive age, but it can be difficult to diagnose. On average, a diagnosis takes around 7.5 years from the onset of symptoms, so it’s important for women to understand what endometriosis is and how it might affect them.

Here, King Edward VII’s Hospital Consultant Gynaecologist Mr Alfred Cutner talks in-depth about the signs and symptoms of endometriosis, how to best get a diagnosis and what treatment options are available.

What is endometriosis?

Endometriosis is a condition that causes tissue from the lining of the womb to migrate to other areas of the pelvic cavity such as the fallopian tubes and ovaries. It can also migrate further to the outside of the bowel and bladder.

This tissue then behaves in the same way as it would inside the womb – it builds up and then breaks down and bleeds. When this tissue bleeds in the womb, it leaves the body in the form of a period. When it bleeds in other areas of the pelvic cavity, it builds up, forming cysts, scar tissue and inflammation.

Having endometriosis can significantly affect a woman’s life and it can be confused with other conditions such as irritable bowel syndrome (IBS). Therefore, getting a diagnosis in order to get the right treatment is crucial.

Endometriosis signs and symptoms

Endometriosis affects different women in different ways. Some may have severe endometriosis but not experience any symptoms, whilst other women may only have minimal endometriosis but experience severe symptoms. However, in the majority of women, the more severe the disease, the worse the symptoms.

The most common presenting symptoms are:

• Severe period pain
• Painful sexual intercourse
• Painful bowel movements

Other symptoms of endometriosis include:

• Pelvic pain, especially around the time of a woman’s period
• Ovulation pain
• Back pain
• Leg pain
• Pain on passing urine
• Blood in the urine
• Bleeding from the back passage
• IBS symptoms, including diarrhoea, constipation and bloating
• Pain and difficulty during a pap smear
• Fatigue
• Lack of energy
• Low mood or depression
• Loin pain
• Difficulty getting pregnant

Endometriosis does not cause heavy periods. However many women with endometriosis have a condition called adenomyosis. This is where the cells of the lining of the womb are found within the muscle of the womb and causes heavy and painful periods.

Some women may experience many, or all, of these symptoms, whilst others may experience a small number of them.

Getting an endometriosis diagnosis

If you have any of the symptoms above and you think you may have endometriosis, it’s important to speak to your GP who can begin the process of you getting a diagnosis.

It will help to write down your symptoms and when you get them (in relation to the time of your period) so that you can discuss them properly with your GP. Your GP will ask you some questions about your symptoms and your periods. They may also feel around your abdomen and may perform an internal vaginal examination.

They might then talk to you about pain relief treatments if you suffer with pain, and can refer you to a specialist gynaecologist for further tests.

Your specialist may arrange either an internal ultrasound scan or an MRI in the first instance, to help make a diagnosis based on your symptoms and examination findings. Depending on the results (as all surgery as some risks associated with it) the specialist could recommend that you have a surgical procedure called a laparoscopy.

A laparoscopy involves your specialist passing a small camera on a long, thin surgical instrument into your abdomen via a small incision. You will be asleep during this procedure and they may make a further two to three further small incisions in order to pass other surgical instruments into your abdomen if you require surgical treatment.

A laparoscopy is the only way to get a definitive diagnosis of endometriosis. Your specialist will be looking for scar tissue and lesions caused by endometriosis within your pelvic cavity.

If they find evidence of endometriosis, depending on the discussion they have with you before surgery, they may then remove the scar tissue and any lesions using laparoscopic instruments at the same time, to avoid you having further surgery. More severe cases may require a second operation after a more detailed discussion. This could potentially involve a multidisciplinary team and the use of drugs to shrink the disease, making the surgery more straightforward.

Although the scarring caused by endometriosis can be surgically removed, there is no cure for the condition, only management. Even after surgery, the condition can still cause symptoms such as painful periods and further scarring may eventually build up. However, optimised surgery combined with appropriate ongoing medical management should help limit the effects of any ongoing symptoms.

Endometriosis treatment

Depending on the severity of your symptoms, there are a few different treatments for managing the symptoms of endometriosis to help improve your quality of life.

Whether or not you’ve had surgery to help you deal with your endometriosis, pain relief can be helpful, especially around the time of your period. This can mean taking non-steroidal anti-inflammatory drugs such as ibuprofen from your pharmacy or a drug called mefenamic acid which can be prescribed by your specialist or GP.

Using heat pads or a hot water bottle on your abdomen or back can also help to relieve pain. If your pain is mild, paracetamol may help too. You may also benefit from hormone manipulation through the oral contraceptive pill, the minipill or a Mirena device. Your consultant can discuss these options with you.

Although you may find pain management via a pain clinic helpful, normally this would be recommended after your initial surgery and medical treatment, to treat residual pain.

Some women may be recommended a hysterectomy in conjunction with excising the endometriosis, particularly if you have associated adenomyosis or very severe endometriosis.

If you have endometriosis and you’re struggling to become pregnant, you may also be referred to a fertility specialist who can perform some tests and suggest some fertility treatments.

Support for endometriosis sufferers

Endometriosis is a chronic condition that can severely affect the quality of a woman’s life. Constant or regular pain, discomfort and fatigue plus potential fertility problems can lead to depression and other mental health conditions.

However, it’s not all bad news: there is so much information and support that you can access. The awareness around endometriosis has hugely increased in recent years and there is much more societal understanding and acceptance around it. One such useful resource is Endometriosis UK, an information and support group run by women who understand the condition. As well as providing lots of online information and advice, it also includes a directory of local support groups and an online community where you can ask questions and share tips on dealing with the condition. And when deciding on your treatment, we can help: our Endometriosis Centre is world-renowned and we will support you every step of the way, from diagnosis to treatment. You don’t need to feel alone if you get an endometriosis diagnosis.

More information

• If you think you may have endometriosis, the first step in getting a diagnosis is making an appointment with your GP. (Don’t have a GP?)
• The King Edward VII’s Hospital Endometriosis Centre specialises in diagnosis and treatment and offer one-to-one support from our Clinical Nurse Specialist.