Women in Merseyside have shared their experiences after a study found that many women put off visiting a doctor over endometriosis symptoms.
A new study has been published to coincide with Endometriosis Awareness Month this March.
The study found that 62% of women would put off going to a doctor because of embarrassment, fear of not being taken seriously or thinking their symptoms are normal.
A spokesperson for Endometriosis UK said: “Not only can delayed diagnosis result in the disease worsening, but the condition can also have a huge impact on someone’s mental health, education, relationships and career.
“It’s incredibly important for those experiencing symptoms to seek help so that the right treatment and care can be provided.”
Endometriosis is caused by cells found in the womb growing elsewhere in the body, usually in the pelvic area. It can cause inflammation, pain and adhesions.
Common endometriosis symptoms can vary in intensity and include:
- Pelvic pain
- Painful or irregular periods
- Pain during or after sex
- Painful bowel movements
- Pain when urinating
- Difficulties getting pregnant
Danielle Hewitt, 28, lives in Liverpool and first experienced symptoms of endometriosis when she was 15.
After experiencing ‘excruciating’ and ‘paralysing’ pain in her twenties she visited a walk in centre.
Danielle said: “I felt embarrassed because my most debilitating symptom was pain during intercourse. When I did seek medical support, it was very difficult for me to be taken seriously.
“I was told that my symptoms were IBS, despite IBS having no relationship with pain during intercourse or painful periods. I have been told that my endometriosis pain is actually a UTI on repeated occasions by GPs – even when the test for a UTI is negative.”
Whilst applying for a research assistant job, Danielle came across the condition and matched the described symptoms to her own.
However, it was 18 months before she received a laparoscopy and waited until she she was 24 to be diagnosed.
Education on endometriosis in England was made compulsory in 2020.
However, Endometriosis UK want this to happen in all four nations to prevent more women missing out on diagnosis sooner.
Jade Milne, 25, from Wirral has experienced symptoms since she was 17.
She was incorrectly diagnosed with endometriosis until she was 23.
Constant changes in contraceptive pills and hormone treatment led Jade to struggle with her mental health.
Her symptoms were then diagnosed as IBS which led her to restrict food as she felt that eating was causing her pain.
Jade said: “I ended up not really going to the doctors much between 2017 and early 2019 due to being fobbed off with IBS.
“One male doctor told me that’s just how periods are and another who told me it’s normal and my hormones were causing me to overreact.”
Fortunately, Jade was seen by a new doctor who had experience in a sexual health clinic and spotted the signs of the condition.
She added: “The first thing she asked me was if I had heard of endometriosis as all my symptoms pointed to that – I hadn’t ever heard of it at this point.
“I do imagine how different it would have been if I had known all those years ago.”
The average time for a woman to be diagnosed is eight years. Endometriosis UK has called for the government to reduce this to four years or less by 2025 and one year or less by 2030.
Sophia*, 28, lives in Liverpool and has recently had her investigative surgery cancelled – after waiting for a referral since 2019.
She said: “I don’t think there is enough awareness of endometriosis. It actually effects so many women, it should be part of a doctors routine check-up.
“I’ve heard of so many friends or friends of friends who have it but have had to wait so long for a diagnosis, even when they’ve pushed and pushed for answers.”
For more information on endometriosis visit endometriosis-uk.org.
Photo courtesy of Fa Barboza on Unsplash