Similar symptoms no excuse for delayed endometriosis diagnosis
March 1, 2020
The month of March is Endometriosis Awareness Month.
Endometriosis is a condition where the endometrial cells that line the uterus grow elsewhere in the body. These cells then begin to bleed in the same way that the cells in the uterus bleed. However, there is no way for this blood to leave the body and so, inflammation, severe pain and the formation of scar tissue can occur in those with the condition. In turn, this can have a significant impact on the lives of those living with the condition, affecting their ability to work, socialise and live a normal life.
In this article, we look more closely at endometriosis, why it can take so long for sufferers to be correctly diagnosed and what you can do if you have been misdiagnosed.
Endometriosis affects 10% of women in the UK, or around 1.5 million women.
As it affects so many women, the condition has received increasing coverage in the media in recent years. For example, the BBC Radio 5Live presenter Emma Barnett opened up about living with the condition last year, while the writer and star of the popular American drama series Girls, Lena Dunham, has openly spoken about her decision to have a hysterectomy such was the level of pain the condition was causing her.
You may also have read stories in the national press about women who have decided to enter the menopause temporarily in order to alleviate their symptoms, such as 22-year-old Katy Johnson from Glasgow. Meanwhile, Alec Shelbrooke MP led a debate on 29 October last year in Westminster Hall on the need for woman with endometriosis to receive greater support in the workplace.
Unfortunately for a condition that is so prevalent in the UK, and is believed to affect around 176 million women globally, there still does not seem to be widespread understanding of the condition among the general public.
Thankfully, there are a lot of first-person accounts on the internet featured in high-profile publications like The Independent and The Daily Mail. What is most troubling when reading these accounts, other than the details of what women with the condition deal with on a daily basis, is how long it can take to be properly diagnosed – the average wait time to receive a diagnosis of endometriosis currently sits at around seven and a half years – and the number of women with endometriosis who have been misdiagnosed.
There are understandable reasons why it can take some time for endometriosis to be properly diagnosed. For example, some of the symptoms that commonly present in those who have endometriosis, such as diarrhoea, fatigue and cramping in the abdominal region, are also present in those who suffer from Irritable Bowel Disease conditions like Crohn’s Disease and Ulcerative Colitis.
However, these conditions are distinctly different and can be accurately diagnosed through different procedures. For example, Crohn’s Disease affects the digestive system. Therefore, an endoscopy or colonoscopy would eliminate this being a possibility. While the procedure for detecting endometriosis – laparoscopy – is more invasive, as it involves inserting a small camera through the skin of the abdomen so that the reproductive organs can be viewed, and requires more specialist aftercare, it is the only way for doctors to diagnose the illness and its severity. By undertaking a laparoscopy, medical professionals would also be able to see if parts of the digestive system were inflamed and so, could flag up the need for a patient to undergo a colonoscopy or endoscopy if there was cause for concern and the inspection of the reproductive organs had shown no issues.
Furthermore, endometriosis not being properly diagnosed and treated can have serious long-term effects on a woman’s fertility through the damage that is caused to the reproductive organs. If a lady’s reproductive organs have been severely damaged due to not being properly treated for endometriosis this can also lead to a woman needing to undergo a hysterectomy.
Therefore, the argument for delaying a laparoscopy in favour of other procedures is weakened when considering the risk versus reward factors for both patients and medical practitioners, as unnecessary delays in properly diagnosing the condition or misdiagnosing can leave medical professionals open to claims of medical negligence.
If you would like to discuss a case of endometriosis that you think has been misdiagnosed previously or you have had a significant delay in a diagnosis, do not hesitate to get in touch with our expert team today. This can be done by filling in our contact form online or by calling us free on 0161 413 8761.
To learn more about endometriosis and to access some very helpful resources on the subject, we highly recommend visiting the Endometriosis UK website.