Ask the expert: what is endometriosis?

Endometriosis affects around 1.5 million women in the UK. It’s a chronic and debilitating condition and can affect women and girls from puberty, regardless of race or ethnicity.

Our Consultant Gynaecologist, Mr Akobundu Nnochiri, answers some of the most common questions asked about endometriosis, such as what it is, what the symptoms are and how it is diagnosed and treated.

What is Endometriosis?

Endometriosis is a condition where the cells that line the inside of the womb (uterus) are found elsewhere in the body, commonly in the pelvic structures, such as the ovaries, fallopian tubes, and the lining of the pelvis (peritoneum). It can even be found in places such as the lungs, vocal cords and kidneys, to mention a few.
Every month these cells respond to hormones produced by the ovaries in the same way as the lining of the womb. However, unlike the lining of the womb which has the ability to heal itself every cycle, scarring can occur in these other areas, causing pain and disfigurement of the pelvic structures, leading to infertility, fatigue and problems with the bowel and bladder.

What causes Endometriosis?

We really do not know what causes endometriosis, but several theories have been put forward. We do know that it can run in families, which means that you are more likely to develop endometriosis if your mother or sister has had the condition.

What are the common symptoms of Endometriosis?

Endometriosis can affect women in a number of ways. Symptoms can vary in intensity from one woman to another and the pain and discomfort experienced doesn’t always relate to the amount of the disease someone has.

Symptoms for endometriosis can vary with the menstrual cycle, and is usually worse in the days before and during a period.

Common symptoms 

• Painful, heavy or irregular periods
• Persistent or regularly recurring pain the lower tummy (pelvis) or back
• Painful bowel movements
• Bleeding when pooing during a period
• Pain during or after sex
• Difficulty getting pregnant
• General lack of energy
• Symptoms similar to IBS (diarrhoea, constipation and bloating, usually worse during a period)
• Pain or blood when passing urine

How is Endometriosis diagnosed?

Diagnosis can usually be delayed, on average 7.5 years, so keeping a diary of your symptoms is key to getting an early diagnosis.

Your GP would ask you about your symptoms, and may offer you an abdominal and pelvic examination, to see if there are any lumps or bumps in the lower tummy area, such as ovarian cysts, and to see if your pelvic organs are free and mobile, or fixed due to adhesions (where two affected areas can become stuck together).

You may also have an ultrasound scan on your lower belly (pelvis), to see if your symptoms relate to Chocolate Cysts (Endometrioma: noncancerous, fluid-filled cysts) or swollen fallopian tubes instead.

If you have significant pain when passing urine you may be sent to have an ultrasound of your kidneys, ureters and bladder, or an MRI if there is suspicion that your bowels may be involved.

However, the gold standard for diagnosis is laparoscopy (keyhole surgery). The extent of disease can be mapped out at laparoscopy, and if previously discussed and agreed, then treatment may be carried out at the same time.

How is Endometriosis treated?

There are many ways that endometriosis can be treated, both surgical and non-surgical.

Non-surgical Treatments:

Pain relief

A short trial with painkillers, such as Analgesics (such as paracetamol and aspirin) or NSAIDs (such as ibuprofen), may be recommended for first-line management of endometriosis-related pain.

NSAIDs are preventative, so ensure you take them before the pain becomes significant.

Hormonal

“The pill” (combined contraceptive pill), “the mini-pill” (progestogen-only pill) and “the coil” (IUD - intrauterine device) are all commonly used hormonal treatments for endometriosis.

A more powerful drug may also be used, inducing temporary menopause, however their side effects limits their use to six months.

Symptoms can return within six to nine months of stopping most hormonal therapies.

Complementary therapies

Complementary therapies, such as acupuncture, homeopathy and reflexology, may be beneficial in controlling the symptoms of endometriosis. However, it’s important to ensure you’re following the advice of a registered, professional practitioner. Always consult your GP before you try a complementary therapy.

Surgical treatment:

More recently laparoscopy has become the most common surgical approach to managing endometriosis, and is done under general anaesthetic. I prefer to cut the endometriosis out, but removal of the tissue using an energy source, for example radiofrequency, heated fluid and freezing, is also a recognised method of treating endometriosis deposits.

Removing the endometriosis, separating and freeing the scar tissue and removing of ovarian cysts can improve both pain and fertility. Open surgery may be required in severe cases, though this is becoming less common, as expertise in laparoscopy increases. A multidisciplinary team that includes the gynaecologist, a bowel surgeon and/or bladder surgeon may be required depending on the severity of disease.

A hysterectomy, with or without the removal of the ovaries, may be considered for women who don’t plan on having any more children.

It is important to understand that endometriosis is a chronic condition, that can only be managed but not cured, therefore you should discuss post-surgical hormonal management of endometriosis with your gynaecologist to prevent or delay it coming back.

For patients who aren’t trying to get pregnant hormone therapy is really important post-surgery to prevent further surgeries due to recurrence.

Endometriosis UK is a registered charity, working to provide support and information for women living with endometriosis. Click here to visit their website for more information on the disease.

If you’re experiencing the symptoms mentioned, or you have been previously diagnosed with endometriosis and would like more information, Mr Akobundu Nnochiri is available at Spire London East Hospital for private consultations. Simply call our Private Patient Executive team to book on 020 8709 7817 or complete our enquiry form.