'I was told having kids would cure my endometriosis - this is why we need a doctor that's going to listen'
If you had your first symptoms of endometriosis today, you likely wouldn’t get a diagnosis until 2034 🚨
A woman has shared her battle to access healthcare for endometriosis, after being told by doctors that having children would “make her all better”.
Donna Haughan, who lives with the debilitating condition, told us how her symptoms had been “dismissed” by doctors, who misdiagnosed her with constipation. The fitness instructor eventually had to fork out for private care and has called for more understanding and awareness about endometriosis so women can get the care they need on the NHS.
Donna, of Blackpool, said: “The endometriosis had wrapped itself around my appendix, so alongside having this huge cyst on the inside of my ovary, which was the size of a golf ball, I'd also got a rumbling appendix and I couldn't get the NHS to do anything.
“In 18 months, I had been going through pointless tests, being fobbed off with IBS and fibromyalgia. I went private, and literally within two weeks, I was in surgery.”
An estimated 1.5 million women in the UK are affected by endometriosis, which is a systemic inflammatory condition where cells similar to the lining of the uterus are found elsewhere in the body.
The disease can cause debilitating symptoms such as chronic pelvic pain, painful periods, painful bowel movements, painful urination, and painful sex. It can lead to chronic pain, poor quality of life, infertility, and other complications when left untreated.
In March, as part of Endometriosis Awareness Month, National World launched the Endo the Battle campaign. It highlighted the uphill battle that many patients face getting a diagnosis or simply seeking healthcare.
Over 400 of you responded to our anonymous survey to share your experience, with many reporting that their symptoms had been dismissed, normalised, or downplayed.
Donna also experienced this, telling us: “They were asking me why I don’t have children, don't I want children, don't you know that this is going to cure it, this is going to make you better and then you get looked at like there's something wrong with you because you don't want children.”
Not having your symptoms believed can have a devastating impact, Donna said: “When the doctor doesn't believe you, people in your family won't believe you. Your friends won't believe you.
“You start to question yourself. Am I a hypochondriac? Is it all in my head? Am I just nuts?
“You need a doctor that's going to listen to you, not put you on a nine-month waiting list or an 18-month waiting list, or tell you it's all in your head.”
Watch the video above to hear more about Donna’s story, as she opens up about living with endometriosis and her fight to access healthcare.