Three women have revealed what it’s like to live with endometriosis, with one claiming her pain is so severe it’s like ‘sitting on a hot knife’.
The painful disorder affects one in ten women in the UK and takes on average seven years to diagnose, with many medical professionals confusing the condition with ailments such as Polycystic ovary syndrome and Irritable bowel syndrome.
Bex, Sadie and Rebekah have opened up to the BBC about their condition and their struggle to be correctly diagnosed, with all three revealing they were initially misdiagnosed and one claiming she’s seen ‘in the region of 50 doctors’.
Bex explained that it took her 11 years go get an answer and that the lack of knowledge makes her angry, as well as ‘worried’ about other women.
She said: ‘My pain feels like I have sat on a hot knife.
‘Being misdiagnosed made me feel really sad, helpless. I got told I had Polycystic ovary syndrome. [It has taken] over 11 years I’ve been hospitalised maybe 50 times.
‘It makes me feel angry but also worried about all the other women out there that are currently struggling.’
She went on to admit that she’s ‘collapsed in the street’ due to her awful pain and questioned why there’s so much research in to condition such as diabetes which affects one in 16 people, and not endometriosis.
Bex compared her pain to ‘sitting on a hot knife’ and revealed it took her eleven years to know what her condition was, with doctors originally thinking she had Polycystic ovary syndrome
She said: ‘I think society doesn’t take women’s pain as seriously as they should a lot of the time.
‘There’s so much research and funding around diabetes but why, if it’s affecting the same amount of people, do we not having any more funding but behind it? We don’t even have a cure yet.’
Sadie, who was originally told her condition was IBS, revealed that she’s unable to use tampons because her illness is so painful – and compared it to someone ‘squeezing’ her internal organs.
The video attempted to visually demonstrate the painful condition, which causes painful periods, pain with intercourse, pain with bowel movements or urination, inflammation, excessive bleeding and infertility
She said: ‘Putting your hand up inside you and someone’s squeezing all your organs. I can’t wear tampons because they’re too painful.’
It took doctors 15-years to realise that Sadie had Endometriosis and feels that the condition should be taught in schools when pupils learn about periods.
She said: ‘I’ve seen doctors who have never heard of it.
What is endometriosis? How the disorder results in pelvic pain and internal scarring
Endometriosis is an often painful disorder in which tissue similar to the lining of the uterus – the endometrium – grows outside the uterus.
It most commonly affects the ovaries, Fallopian tubes and the tissue lining the pelvis.
The primary symptom of endometriosis is pelvic pain although many women also experience cramping during their menstrual cycle.
Symptoms also include painful periods, pain with intercourse, pain with bowel movements or urination, inflammation, excessive bleeding and infertility.
Often misdiagnosed, many women only discover they have the condition during infertility treatment.
Approximately half of women diagnosed with endometriosis have difficulty getting pregnant.
While studies about the link between endometriosis and miscarriages are still ongoing, newer research suggests that the condition can leave sufferers at greater risk of having a miscarriage.
Source: Mayo Clinic
‘It’s 16 years and it’s only sort of been in the last 12 months they’ve mentioned this condition. I’ve seen in the region of about 50 doctors
‘Why is it during sex education you never learn about this condition?’
Rebekah was also told that her condition was IBS, and confessed that sometimes her pain is so intense it causes her to vomit.
She said that her pain is ‘like someone’s getting a knife and just whipping it round on the inside. There have been times I’ve vomited just because it’s so much on my body.
‘It’s ten years of the same symptoms just getting progressively worse and no real investigation as to why.
Sadie, who was originally told her condition was IBS, revealed that she’s unable to use tampons as her illness is so painful and it took 15-years to diagnose her condition
Rebekah was also told that her condition was IBS and confessed that sometimes her pain is so intense it causes her to vomit
‘This year? five times I’ve been in hospital A&A because of pain.’
She feels that women are made to feel as though their pain is natural, and shouldn’t be spoken about, insisting that she shouldn’t have to ‘fight with her doctor’.
She said: ‘Why there isn’t more knowledge about this within health care professionals?
‘I find myself a lot of the time explaining what Endometriosis is and how it affects me to doctors.
‘I constantly feel like I have to fight. I’m fighting with my own body every single day as it is I shouldn’t have to fight with the doctor.’