What is endometriosis?

Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the womb. It can be in the fallopian tubes, the lining of the pelvis, on the ovaries, bowel or bladder. Endometriosis can cause severe pelvic pain, heavy periods, painful sex and infertility.

Endometriosis is a common condition but sadly it is often missed and misdiagnosed. Research shows that on average, it takes 7 years from the onset of pain to achieving a diagnosis.  This is unacceptable when it is thought to affect more than two million women in the UK, impacting their health, their fertility, and their relationships.

What happens?

When a woman is of reproductive age, every month the lining of the womb breaks down and is shed. The bleeding from the womb lining escapes through the vagina as a period.  In a woman with endometriosis, the patches of endometriosis release blood elsewhere into the pelvis. This bleeding can lead to severe pain, inflammation and scarring of the pelvic structures and cyst formation in the ovaries.

Who develops endometriosis?

The short answer is it can develop in any woman. Endometriosis affects a staggering 156 million worldwide. That works out at around one in ten women of reproductive age, it is thought to be the second most common gynaecological condition.

We don’t fully know what causes endometriotic lesions and nodules develop. It’s thought that in some women there is retrograde menstrual flow, meaning that period blood flows backwards down the fallopian tubes into the pelvis, taking cells from the lining of the womb with it. These cells may implant and grow, causing endometriosis.

But why are only some people affected? It could be a combination of genetic bad luck, together with an immune response and maybe some form of chemical trigger. Research is ongoing, with theories that the condition may be linked to air pollutants or other chemicals. The truth is, that we’re still not really sure.

What are the symptoms of endometriosis?

Often there is no indication that anything is wrong and the endometriosis is only discovered by chance. However, for many women, it can be incredibly uncomfortable and distressing. Symptoms include:

  • Painful periods: Lots of women accept period pain as an inevitable part of being a woman. But periods should not be so painful that they affect your life, your work, and your relationships.
  • Pelvic pain: The pain of endometriosis can be severe and although it is often associated with your period the ongoing inflammation can cause pain that lasts throughout the cycle
  • Fatigue and malaise: many women with endometriosis feel weak, tired and generally unwell
  • Painful sex: especially deep pain, which can continue after intercourse has stopped
  • Difficulty getting pregnant: the bleeding in the pelvis can lead to the tubes and ovaries getting inflamed and stuck together which can affect fertility
  • Pain on opening the bowels or passing urine: this can be a sign of a more severe form of endometriosis that affects the bowel and the bladder.
A cross section of an endometrioma
Endometriosis lesions causing fibrosis and adhesions
Endometriosis on bladder uterus and peritoneum
Endometriosis on bladder uterus and peritoneum

How is endometriosis diagnosed?

Endometriosis can be tricky to diagnose and many doctors haven’t had enough experience in identifying and treating this condition. However, your symptoms can provide lots of clues:

Pelvic examination: On examination it is possible to feel ovarian cysts and swellings, identify painful endometriotic nodules or note areas of tenderness

Ultrasound scan: An ultrasound scan can show cysts on the ovaries and show if previous inflammation has caused the pelvic structures to be stuck together or pulled out of position. Ultrasound can also help spot some nodules of endometriosis

Laparoscopy: A laparoscope is a telescope that is inserted through a small incision in the tummy button to look inside the abdomen and pelvis. It is the best way of accurately diagnosing and identifying endometriosis.

The actress Susan Sarandon spoke out about endometriosis:

“When all you know is pain you don’t know that that is not normal. It is not a woman’s lot to suffer, even if we’ve been raised that way”

She’s right. Too many women suffer the pain of endometriosis for too long. But there are effective treatments that can make a real difference to your pain, your fertility and your quality of life. Look at our treatment page to find out more and check out Endometriosis UK for excellent advice, support and guidance.

Treatment of endometriosis

When you are diagnosed with endometriosis, the future can seem bleak. There is too much myth and misinformation around, with websites, books and even doctors saying that endometriosis can not be cured. That is not true.

Endometriosis is painful, frustrating and difficult to deal with – but you do not have to suffer in silence. There are treatments to ease discomfort and prevent the progress of the disease and in expert surgical hands the areas of endometriosis can be cut out and the condition can be considered as cured.

Why was endometriosis described as incurable?

It’s true to say that endometriosis is tricky and challenging to treat. Inadequate surgery in inexpert hands can mean that endometriosis is not properly removed and recurs rapidly. This is especially true if the patches have been burned away, ablated or lasered (as opposed to excised or cut away).

However, better techniques have changed things. Mr Khazali has operated on many women who now live free from the pain of endometriosis. Sometimes, patches recur and symptoms can return. However, this is an exception, not the rule, and repeat surgery can usually resolve this issue.

What is the best treatment for endometriosis?

The right treatment will depend on your symptoms, the extent of your disease and whether any of the vital pelvic structures such as the bladder, bowel and the ureters (tubes that take urine from the kidneys to the bladder) are affected. Sometimes, no treatment is necessary and it is better to simply monitor your endometriosis.

Medication and surgery can both help. The best treatment for your individual needs can be decided after a detailed discussion, considering your preferences and whether you plan any future pregnancies.

Consulting with a gynaecological surgeon with a special interest and skills in the management of endometriosis, can help plan the pathway to controlling your endometriosis, instead of it controlling you.

The treatments can include:

Painkillers: Pain can be excruciating in endometriosis. Simple analgesics like paracetamol, anti-inflammatories such as ibuprofen and stronger painkillers including codeine can all help. When the endometriosis has caused nerve sensitivity or damage, other treatments may become necessary such as pregabalin or gabapentin.