What is endometriosis? Everything you need to know about the condition

An estimated two million women in Britain suffer from endometriosis.

With 1 in 10 females living with this condition you would have thought that we would all know exactly what it is and what the symptoms of endometriosis are, but it’s a condition that’s still relatively unknown.

According to the charity Endometriosis UK, it takes on average seven and a half years for diagnosis.

More than 13,500 women have taken part in BBC research revealing the debilitating effects of endometriosis. The condition causes extreme pain, extreme heavy periods and can sometimes lead to infertility.

Women with the condition answered questions on how it has affected their career, education, relationships and mental health. Around half of women taking part in the research told the study they had experienced suicidal thoughts.

Following the research, MPs are to launch an inquiry into women’s experiences of endometriosis.

Anna Turley, MP, and member of the All-Party Parliamentary Group for Endometriosis said: ‘It wasn’t until I was hospitalised and had the diagnosis that I realised how little attention endometriosis receives, how limited research funding is, and how many women are misdiagnosed.’

Emma Cox, CEO of charity Endometriosis UK said: ‘This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.

Endometriosis affects over 1.5 million women in the UK and the impact it can have on all aspects of a person’s life – both physically and mentally – must be recognised. Currently the diagnosis time for endometriosis is an unacceptable seven and a half years on average; this must come down.’

What is endometriosis?

Dr Larisa Corda said: ‘Endometriosis is a very common condition amongst women that is essentially to do with finding tissue that belongs to the inside of the womb (the endometrium), elsewhere in the body, most typically the pelvis.’

Tissue similar to the lining of the womb can begin to grow in the pelvis, ovaries and fallopian tubes.

Dr Larisa continued: ‘It can lead to scarring and pain that is commonly experienced when a woman menstruates, although the pain can sometimes last throughout the entire cycle.’

These cells behave like normal womb cells, growing and breaking down during your monthly cycle, but unlike the cells in the womb, which are expelled during your period, the blood from endometrial cells is trapped inside the body with no where to escape.

This can lead to very painful and heavy periods, infertility, fatigue, bowel problems and infertility.

Is endometriosis dangerous?

If left untreated, endometriosis is not only very painful but can also possibly lead to infertility. If left untreated, scar tissue and cysts can form, and it can cause infertility. Only 50% of women with endometriosis go on to have children.

endometriosis

Credit: Getty

What are the causes of endometriosis?

It’s often regarded as a disease which affects women in their 30s to 50s, but sufferers can be younger too.

Dr Larisa said: ‘The cause of endometriosis has not yet been identified. We do know that women with a mother or sister affected by endometriosis are likelier to suffer from it too, but there are also theories regarding the immune system as well as what is referred as retrograde menstruation, when blood that collects during menstruation ends up in the fallopian tubes and spilling out into the pelvis, which can lead to seeding of endometrial tissue.’

Though it is not known what causes endometriosis, we do know which symptoms you need to be looking out for each month.

What are the symptoms of endometriosis?

  • Painful periods: The pain typically begins a few days before the period and usually lasts the whole of the period. It is different to normal period pain which is usually not as severe, and doesn’t last as long.
  • Painful sex: The pain is typically felt deep inside, and may last a few hours after sex.
  • Pain in the lower abdomen and pelvic area: Sometimes the pain is constant, but is usually worse on the days just before and during a period.
  • Other menstrual symptoms may occur: For example, bleeding in between periods.
  • Reduced fertility: This may be due to clumps of endometriosis blocking the passage of the egg from an ovary to the fallopian tube. Sometimes, the reason for reduced fertility is not clear.
  • Uncommon symptoms: This may include pain on passing faeces, pain in the lower abdomen when you pass urine, and, very rarely, blood in the urine or faeces.

It is worth remembering that the condition is often misdiagnosed – The National Endometriosis Society says that nearly 70% of women who suffer from it are told they have irritable bowel syndrome.

Can endometriosis be treated?

There is no cure for endometriosis and it can be difficult to treat. Treatment aims to ease symptoms so the condition doesn’t interfere with your daily life. Treatment will be given to relieve pain rather than offer a cure.

The official NHS advice is to use one of the following pain-relief medications:

  • Anti-inflammatories that don’t contain steroids such as ibuprofen are usually the preferred painkiller used to treat endometriosis pain. This is because ibuprofen acts against the swelling. It’s best to take the tablet the day before – or several days before – you expect the period pain.
  • Paracetamol can be used to treat mild pain. It’s not usually as effective as ibuprofen.
  • Codeine is a stronger painkiller that’s sometimes combined with paracetamol or used alone if other painkillers aren’t suitable. However, constipation is a common side effect, which may aggravate the symptoms of endometriosis.
  • Taking the combined contraceptive pill containing hormones oestrogen and progestogen can help relieve mild symptoms and be used over long periods of time. As it stops eggs being released it make periods lighter and less painful.
  • Surgery is a last resort but can be used to remove or destroy areas of tissue, which can help improve symptoms and fertility.

Fertility and endometriosis

One of the main complications of endometriosis is having difficulty getting pregnant or not being able to conceive at all.

Dr Larisa said: ‘Endometriosis can affect fertility if it causes damage to the ovaries or fallopian tubes, by causing scarring. It can also reduce the number and quality of eggs that a woman has, and can distort pelvic anatomy due to the scarring.

‘Implantation of an embryo can also be affected as endometriosis causes inflammation that creates an unfavourable environment for an embryo to grow and develop in. Once endometriosis is treated, however, and normal pelvic anatomy restored, the prognosis can be very good.’

Celebrities who suffer with endometriosis

Despite being such a wide-spread condition, many people don’t know about endometriosis and the problems it causes. But there are plenty of high-profile endometriosis sufferers too.

Credit: Getty

British actress Anna Friel has spoken publicly of her battle with endometriosis and her subsequent struggle to fall pregnant. She was diagnosed when she was 28, after being rushed to hospital with a ruptured ovarian cyst. She said; ‘One doctor told me it would be very hard if I left trying for a baby beyond the age of 30, which at the time was far from an ideal situation’.

Credit: Getty

Former Spice Girl Emma Bunton has also revealed she was diagnosed at 25; ‘I remember the doctor saying at the time – fifty per cent of women with endometriosis go on to have children – I thought, only 50 per cent!? It scared the life out of me.’

As well as US politician Hillary Clinton, Baywatch star Pamela Anderson and comedian Whoopi Goldberg.

Real-life endometriosis stories

Alongside the high-profile sufferers, endometriosis is an issue that’s close to home for many British women. Below we’ve published a few of our user’s stories.

Deby’s story:
‘I’ve always had heavy, painful periods. At 16, my GP put me on the pill and that helped. But about eight years ago, the pain returned with a vengeance. It felt like someone was sticking a knife into my stomach. My doctor referred me for tests.’

‘A laparoscopy confirmed I had endometriosis, which was causing inflammation, scar tissue and pain. Then my daughter, Lucy, started suffering from painful periods as well, and last year she was also diagnosed with endometriosis. I felt terrible for her. She was put on the pill and offered hormone injections, but she isn’t keen on having them because they’d give her a false menopause.’

‘I had laser surgery four years ago to remove tissue from my ovaries, but Lucy can’t have it because it would affect her fertility. It did help, although I still have pain for three out of every four weeks. Lucy and I try to deal with the condition with exercise, reflexology and painkillers. Some months can be tough, but we support each other.’

Caroline’s story:
‘I’m recovering from a lapscopy at the min third one in 4 years, got diagnosed 3 years ago when I was fitted with the mirena coil haven’t had a period in three years yet the endometriosis keeps growing back, although lucky for me my ovaries and fallopian tubes have always been clear from it, im only 27 and have no kids yet and no doctor can say when it comes to conceiving whether I will be able to but I need to keep my chin up, but for anyone out there who thinks there suffering from endometriosis and are being told its just painful periods and giving the pill fight your side it took me 8 years before I got my first laposcopy and even thou its a hard operation to recover from at least I know now what’s wrong with me.’

Kirsty’s story:
‘I was diagnosed at 16 with endometriosis and two wombs (One of which was removed in a hemi hysterectomy back at the time). I am now 33 and suffered with unbearable pains from about the age of 13 to about the age of 26…. I was prescribed every pain relief on the market, along with injections to induce the menopause… all of which were unsuccessful. You may have already tried it but the only thing that seemed to work for me, was something called Mefanemic Acid which I believe isn’t a painkiller but a relaxant. If you haven’t already… give it a go!’