What is endometriosis: the symptoms, stages and causes

What is endometriosis?

It can often be dismissed as “women’s troubles” but endometriosis is a serious condition and, if left untreated, can be severely debilitating. Our short guide explains what it is, and how to spot the signs of endometriosis.

According to medical experts and leading charity Endometriosis UK:

  • Endometriosis affects as many as one in 10 women of reproductive age
  • It’s the second most common gynaecological condition in the UK
  • Around 1.5 million women in the UK currently have endometriosis – comparable with the number affected by diabetes

Despite this, endometriosis symptoms are often left untreated and undiagnosed. They can have a significant impact on the life of someone who lives with the condition; from causing chronic pain to affecting fertility.

What is endometriosis?

Endometriosis is a common condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body. It thickens and breaks down during each menstrual cycle. The blood then becomes trapped, causing irritation or abnormalities. It often causes pain, particularly during periods.

Endometriosis can appear in many different places, including the ovaries, fallopian tubes, inside the tummy and in or around the bladder or bowel. Caesarean section scars are also another common site of endometriosis.

Endometriosis mainly affects girls and women of childbearing age. It's less common in women who've been through the menopause.

Is there an endometriosis cure?

Currently there’s no cure for endometriosis, but there are treatments which can help ease its symptoms such as painkillers, hormone medicines (such as contraceptives) and surgery. But there is help available. 

Endometriosis symptoms

Here are some of the common signs and symptoms of endometriosis:

  • Painful, heavy and irregular periods
  • Pain while having sex, or after having sex
  • Fertility problems (difficulties getting pregnant)
  • Pain or bleeding while going to the toilet
  • Fatigue, tiredness and/or depression

If you have any of these symptoms, they may not necessarily be signs of endometriosis and could be caused by other conditions.

“Pain and fertility issues are the most common problems caused by endometriosis. In advanced cases it may also affect the function of other pelvic organs like the bowel and kidneys.

Referral to an endometriosis specialist is recommended If patients get symptoms such as breakthrough period pain, despite being on hormonal treatment, or if they have dyspareunia (pain during sex), dyschezia (pain on opening bowels during periods) or bleeding from the back passage. Hormonal interventions like the Pill can effectively control symptoms and stop progression of the disease” says Mr Kovoor.

Stages of endometriosis

Endometriosis has varying degrees of severity and can get worse over time. However, it’s possible to have ‘mild’ endometriosis with a lot of pain, or barely notice ‘severe’ endometriosis.

The stages of endometriosis are based on its location, extent, depth and severity:

  1. Minimal: small lesions/shallow implants on ovary, inflammation in pelvic cavity
  2. Mild: shallow implants on ovary and pelvic lining, alongside light lesions
  3. Moderate: deep implants on ovary and pelvic lining, more lesions present
  4. Severe: deep implants on ovaries and pelvic lining, lesions have spread

It’s better to be diagnosed in the earlier stages of endometriosis, as treatment is easier.

Endometriosis and fertility

Many women are concerned about endometriosis’ effect on fertility and getting pregnant.

Mr Kovoor says, “Endometriosis can affect fertility and is one of the major causes of female infertility. There is good evidence that surgical excision of endometriosis in early stages improves fertility. However, in advanced cases the role of surgery in fertility is less clear.

“Apart from fertility, surgical intervention is often needed when symptoms are severe or if there is compromise of organ function. Surgery in severe endometriosis can be quite complex and hence is best done by specialist surgeons. Following surgery patients need to stay on hormonal treatment to prevent recurrences unless they are trying for pregnancy.

“Hysterectomy and removal of ovaries is often considered as the last resort in patients who have completed their family. This requires careful assessment and it is important that all endometriosis outside the uterus is also removed at the time to prevent any relapse of symptoms.”

If you’re worried about your fertility or signs of endometriosis, our experienced Consultants can help.

Endometriosis causes

Endometriosis is more common now than before, and more is being discovered about endometriosis’ causes. This could be because of increased awareness and recognition both by healthcare professionals and by patients.

Pregnancy and breast feeding can cause regression of the disease. Delaying pregnancies and having fewer children may play a role in disease progression.

Endometriosis can also be genetic, as it often runs in families. It can also be caused by:

  • Hormones: oestrogen appears to affect endometriosis (research is ongoing)
  • Immune system issues: a faulty immune system may fail to spot and destroy the tissue
  • Surgery: C-sections and a hysterectomy can cause endometriosis to be found in scars

There isn’t much you can do to stop endometriosis, but you can help avoid hormonal endometriosis by lowering your level of oestrogen. Oestrogen helps your womb lining to thicken and may increase with the use of contraceptive pills, excess body fat, or alcohol/caffeine intake.

I have signs of endometriosis – should I be worried?

If you have signs of endometriosis, it’s best to get a diagnosis early on. Endometriosis symptoms can be hard to recognise, and studies suggest the average time to get a diagnosis is seven years.

Fortunately, this is getting better as more people become aware of the condition. We have a specialist team at Benenden Hospital who can help put your mind at ease about any signs of endometriosis.

How do I get an endometriosis diagnosis?

Diagnosis is confirmed by a gynaecological laparoscopy where the Consultant passes a thin telescope through a small cut in the tummy to see if there are any patches of endometriosis tissue in your body.

Ultrasound scans are not good enough to see endometriosis, unless the ovaries have endometriotic cysts. An MRI scan may be required if there’s indication of more severe disease.

Treatment for endometriosis at Benenden Hospital

At Benenden Hospital, we carry out a range of gynaecology treatments in our calm and healing environment. Our women’s health team specialises in endometriosis diagnosis and treatment so you can get back to being you as quickly as possible.

For more information about endometriosis treatment, contact us online or call our Private Patient Team on 01580 363158.

Published on 11 September 2020