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Blog: Endometriosis: Have you been suffering in silence?

November 8, 2019

Endometriosis affects as many as one in 10 women and can have an effect on several different aspects of their lives. Often dismissed as ‘women’s troubles’, it can cause crippling pain, heavy periods and infertility. A vast lack of research and funding means that sufferers not only live in severe pain, but often find it impacts their relationships, education, careers and ability to socialise.

What is Endometriosis?

Endometriosis occurs when tissue similar to that in the lining of the womb grows elsewhere in the body, usually around the bowel, bladder and reproductive organs. The tissue builds up and bleeds each month, however does not have any way of leaving the body. This therefore leads to inflammation, pain and formation of scar tissue

Symptoms of Endometriosis

Common symptoms include chronic pelvic pain, fatigue, painful bowel and bladder movements, painful sex and difficulty getting pregnant. It is known that about 50% of endometriosis is inherited.

This condition has very similar symptoms to menstruation, which is why doctors often do not give due consideration to the patient’s complaints, and often dismiss it as exaggerated period pains. The National Institution for Health and Care Excellence (NICE) published information stating that women often wait between four and ten years before visiting their GP to ask for help with this type of pain. This is usually because they share the same common misconception that these symptoms are to be expected or they are embarrassed to talk about menstruation.

Diagnosis of Endometriosis

In September 2017, NICE introduced new guidelines which warned doctors to be more cautious about their approach to female patients with consistent pain symptoms similar to those of endometriosis sufferers.

On average, in the UK it takes more than 7 years from the onset of symptoms for a woman to be diagnosed with endometriosis. This lengthy delay can lead to long term damage. In some cases, a delay in treatment may be negligent, if there is evidence that an earlier diagnosis could have been made, which would have significantly altered the patient’s outcome.

Unfortunately, at the moment there is no cure for endometriosis. However, there are treatments available to help reduce symptoms of sufferers, which include pain relief, surgery and hormone treatment. In extreme cases, some women require a hysterectomy.

The only way to diagnose the disease is though laparoscopy keyhole surgery, which allows clinicians to view the endometriosis. Removal of endometriosis tissue often involves navigating the bowel or bladder. Treatment is dependent on a multitude of factors such as severity of symptoms and the condition, age, desire to have children, the side effects of medication and risks. Hormonal treatment such as the combined oral contraceptive pill is common, but comes with a wide range of side effects such as depression, acne, irregular bleeding, bloating and nausea. More radical treatment includes surgery, which aims to destroy the deposits of endometriosis. Surgical procedures include advanced keyhole surgery, an oophorectomy (removal of the ovaries) or a hysterectomy (removal of the womb, with or without removing the ovaries). There are various forms of pain management which can assist alongside.

The Impact of Endometriosis

A recent investigation carried out by the BBC found that over half of the 13,500 women surveyed said they had suicidal thoughts and many rely on highly addictive painkillers.

CEO of Endometriosis UK, Emma Cox, said: ‘It cannot be overstated the devastating impact this condition is clearly having on people’s physical and mental health. Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time‘.

Last year, Lena Dunham, actress and writer of the hit HBO series Girls, wrote an article for Vogue about her decision to have a hysterectomy aged just 31 after suffering from crippling pain caused by endometriosis for over 10 years.  She spoke openly about how her pain had become unbearable, and she believed this was having a subsequent impact on her relationship and career as a result. She had already undergone eight surgical procedures previously, in an attempt to treat it.

Popular singer and songwriter, Halsey, has also spoken out on social media about her experience with the disease. She explained how hard it can be to get through the basics of the day, and that doctors told her she was being weak for not being able to handle the pain. She described the moment she was diagnosed as ‘bittersweet because it meant she wasn’t crazy’.

Awareness & Next Steps

The number of endometriosis sufferers is comparable to diabetes; however there is only a fraction of awareness of the condition and help for those affected. It is hoped that by raising awareness and breaking the taboo surrounding endometriosis and its symptoms, that it will lead to earlier diagnosis and decreased suffering for women.

If you or any of your loved ones have suffered a delay in diagnosis and treatment of endometriosis, get in touch with our understanding team of female experts on 03339 874 011 or email enquiries@patient-claims.com.

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