Endometriosis has been diagnosed in two percent of reproductive age women in England, but the true prevalence of the chronic condition is likely to be much higher.
The disease is defined by the NHS as when cells similar to those in the lining of the womb (uterus) grow in other parts of the body and can cause many problems such as heavy menstrual bleeding, severe period pain, and infertility.
Endometriosis has four stages, according to the NHS:
| I Minimal | Small, superficial tissue |
| II Mild | Larger lesions, some of which are imbedded deeply |
| III Moderate | Larger lesions which are imbedded deeper and have adhesions. |
| IV Severe adhesions | Large, deep lesions with dense adhesions |
These stages are widely believed not to correlate with the extent of the sufferer’s symptoms.
There is currently no definitive cure, but the gold-standard treatment is surgery to excise the tissue, performed by an accredited specialist.
Pain relief, physical therapy and hormonal methods are often used to manage symptoms.
The average age at which a woman receives an endometriosis diagnosis currently sits at 35 years.
It is becoming increasingly apparent, though, that many wait years for proper investigation and treatment from medical professionals.
Therefore, the real average age of people with endometriosis could be significantly different to what the current available data suggests.
Why does it take years for endometriosis to be diagnosed?
The best way to diagnose endometriosis is through laparoscopic surgery, but the data shows it can take a long while to reach that stage in the process.
Professor of Reproductive Steroids at the University of Edinburgh, Philippa Saunders, said: “The main reason is probably that the symptoms that individuals go to their GPs with such as abdominal pain, bloating and menstrual pain are not necessarily specific to endometriosis.
“So typically a young person who has just started periods will be advised to take oral contraceptives to reduce the menstrual pain or may be given a diagnosis of IBS and told to adjust their diet.”
The effects of endometriosis go far beyond the female reproductive system and it acts as a progressive disease, meaning it often gets worse over time.
Professor Saunders added: “In addition to the physical impacts patients often say not being believed when they describe the severity of their symptoms is really bad for their wellbeing.
“Depression, anxiety and increased rates of suicidal thoughts have all been documented in patients with endometriosis.”
Endometriosis is not just a bad period
Charlotte Briggs was told she had endometriosis when she was 16 after years of suffering, but her experience has been far from straightforward.
Charlotte said: “I had a diagnostic laparoscopy and upon finding endometriosis covering my ovaries, my surgeon used ablation to remove the endometriosis. This is less effective than excision surgery, and endometriosis can grow back much quicker.
“I was not given a reason for why ablation was used instead of excision. I was then put on the Depo-Provera injection after surgery without getting a chance to discuss my options or what my future will look like with endometriosis.”
Charlotte’s story highlights that the few who are diagnosed earlier than the average, still struggle to access the most effective treatment and often do not receive adequate support.
Endometriosis is by far the most common women’s reproductive health problem, yet the scientific understanding of it remains vague.
It is likely that there is a genetic link, but we do not yet know what, how, or why.
Endometriosis accounts for 45% of reproductive health issues, but it is also likely that the true number is even higher.
With 26% of the cases to be described vaguely as ‘other primary diagnosis’ and evidence suggesting endometriosis is under-diagnosed, the question ca be asked: how many of those ‘other primary diagnosis’ cases are actually undetected and untreated endometriosis?
A condition as common as diabetes
Endometriosis UK say the condition affects 10% of women in England, Scotland, Northern Ireland, and Wales – making it as common as diabetes.
However, this figure does not account for the many who are awaiting investigation.
The condition is most common in the South East of England, where the study found 22,015 counts of endometriosis per 100,000 people.
This means the region accounts for almost 20% of all of England’s counts of endometriosis.
The North East, by contrast, had only 5,195 cases per 100,000 people – less than 5%.
These figures suggest that access to reproductive healthcare is greater in the South East compared to in the North East.
Rebecca Petit spoke about her journey to a diagnosis.
She said: “My experience was definitely a long and very frustrating process.
“I went to the GP at 12 when my mum realised my menstrual cramps were a lot worse than ‘normal’ cramps.
“To start with, my GP was convinced I was exaggerating the pain so prescribed over the counter pain relief but after my sister was diagnosed with PCOS (Polycystic Ovarian Syndrome) my symptoms were taken more seriously.
“As soon as I spoke to a specialist I was put on a laparoscopy waiting list and given treatment options of an IUD or a hysterectomy.
“I felt most GPs I spoke to, other than the one who eventually referred me, didn’t have great knowledge or sympathy around symptoms or possible treatment options.”
One study called endometriosis ‘the most perplexing gynaecological condition’ and the widespread misconceptions about the disease cause people like Rebecca to endure more than they should ever have to.
Time for change
Sarah Harris has endometriosis, and is a journalist currently working towards a PhD in examining barriers to diagnosis of the disease in primary care.
She said: “It can affect people who do not identify as female, and also those who may not menstruate. It’s important to understand it is a full-body disease and only associating it with gynaecological health can be harmful to those who have extra-pelvic endometriosis (endometriosis that has spread outside of their pelvic cavity).
“By the time I was eventually diagnosed, my disease had progressed to a stage 4 (the worse it can be). Although I’m so grateful to have received a diagnosis, I can’t help but wonder if things wouldn’t have been this bad if I had been diagnosed sooner.”
The stories of these women and the data published highlight that the delay in diagnosis and persistent lack of understanding around endometriosis, and how this results in extended wait times and lack of proper care.
Earlier this month, the government announced as part of the Women and Equalities Committee’s inquiry into “women’s reproductive health conditions” that they will consider developing more training materials for teachers to ensuring menstrual health education is properly implemented across schools.
This is vital to ensure all young people know what is a normal period and what isn’t, when to seek help, and to overcome the taboos of speaking about periods and menstrual health.
An Endometriosis UK spokesperson said: “There are clear missed opportunities for change that must be addressed.
“Not only will streamlining endometriosis diagnosis and treatment reduce suffering, it will save NHS resources by reducing the multiple GP, A&E and hospital appointments where symptoms are missed, or not believed.
“The forthcoming Plan for Change and 10 Year Health Plan being developed, and alignment of the Women’s Health Strategy provides the perfect opportunity to rectify this wrong.
“Change is essential if those with endometriosis and menstrual health conditions are to stop facing unacceptable delays in accessing diagnosis and treatment.”
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