An expert guide to living with endometriosis

Estimated reading time: 5 minutes

As Endometriosis Awareness Month (March 2022) shines a light globally on the plight of women from puberty to menopause suffering from the condition, consultant rheumatologist Dr Wendy Holden at Sapphire Clinics, shares her expert insight into the disease.

In the UK, around one in 10 women aged between 25 and 40 are currently living with endometriosis. In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body, most typically elsewhere in the pelvis.

These cells react to the changing hormones during the menstrual cycle. They grow thicker in size as oestrogen levels peak in the middle of the cycle and then they break away and start to bleed (like the lining of the womb during a period ). This blood is slowly reabsorbed by the body but the process can cause inflammation, pain, and the formation of scar tissue.

Many women with endometriosis don’t feel “heard” – it can be a difficult condition to diagnose as its symptoms can be similar to other conditions and a definitive diagnosis cannot be made without keyhole surgery. In fact, research shows that there is an average 7.5 year gap for women between the onset of symptoms and receiving a firm diagnosis.

Pain, sleep, and anxiety are closely interlinked for many patients with endometriosis and one of the keys to managing the condition is to break this negative cycle.

To explain, chronic pain interrupts sleep, lack of sleep means it’s more difficult to cope with pain during the day, focusing on everyday tasks is challenging and it’s harder to introduce positive lifestyle changes such as exercise – this in turn can result in poor mental health such as anxiety and depression. This can subsequently heighten the severity and impact of the pain.

Chronic pain

Pain as a result of endometriosis can be crippling. The condition sees the growth of tissue similar to that in the lining of the womb, but outside the womb itself (typically in or around the pelvic structures such as the bladder, ovaries, colon and rectum). Pain can be experienced by women in multiple ways, at different times and varying intensity including:

• 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
• Pain in the lower abdomen and pelvis
• Pain on passing a bowel motion
• Pain on passing urine
• Low back pain

Managing pain linked to endometriosis is vital. First line treatment options include simple pain killers (e.g. paracetamol, ibuprofen, mefenamic acid and opioids) or hormonal treatment (combined or progesterone only contraceptives) or a combination of both.

For most women, symptoms can be controlled by a combination of these approaches or individually. However, some women may not achieve sufficient resolution of their symptoms despite best treatment. For these patients it is often necessary for them to be reviewed by specialists in women’s health to consider whether surgery may be an appropriate management option.

However, even for those for whom surgery is an option, up to 50 per cent of patients may get recurrent deposits of endometriosis or continue to have chronic pelvic pain. The management for chronic pain is challenging and there is always a pressing need to identify and develop novel therapeutics.

One emerging treatment option for those with chronic pain refractory to first-line treatments is medical cannabis, which was legalised to be prescribed by specialist medical consultants under regulations published in the UK in November 2018.

Medical cannabis is only available for patients who haven’t experienced sufficient relief of symptoms from conventional treatments, but in my experience, for eligible endometriosis patients, medical cannabis may result in pain relief, improved sleep and reduced anxiety.

Sleep

Women find sleep is particularly disturbed during “flare ups” especially when endometrial tissue abnormally located outside the uterus responds to hormones and tries to shed during a period which results in inflammation of the surrounding tissues causing pain.

We can all recognise that a poor night’s sleep can make it more challenging to overcome life’s hurdles. In fact, for those with chronic pain due to endometriosis, this can heighten the awareness of pain making it more unbearable. So, trying to get on top of sleep patterns is an important part of the treatment pathway for women with endometriosis. Good “sleep hygiene” is definitely worth implementing, starting with a regular bedtime and healthy wind down routine which could include limiting “blue screen” use (e.g. mobile phones and laptops) before bed, trying herbal tea with chamomile or a warm bath with lavender oil.

If this fails to achieve the desired effect, there are licensed therapies which can be used in the treatment of sleep disorders and I would encourage anyone to talk to their GP about the diverse range of options available to them.

Anxiety

Endometriosis can be hard to deal with emotionally, with many women feeling like they have been dealt a “difficult hand” with the long-term impact of chronic pain and fatigue affecting their ability to work and socialise.

Moreover, those who experience pain during intercourse may find it hard to be intimate with their partner. Finally, a lot of women that I see are concerned about their fertility with endometriosis. Whilst many women with endometriosis conceive without difficulty, up to one-third will need reproductive assistance. These issues can be hard to cope with and can lead to anxiety and/or depression.

I always advise patients to also address any mental health issues that arise as a result of or separately to endometriosis. Depending on the severity of the problems, for some patients this could be incorporating simple techniques into their daily routine such as exercise, mindfulness, meditation and breathing techniques.

For others, support in the form of talking therapies (such as cognitive behavioural therapy) and anti-depressants may be required. For this, the best port of call is your friendly, local GP.

Dr Wendy Holden is a consultant rheumatologist at Sapphire Medical Clinics find out more here 

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