"I don't look sick but I'm in agony every day" - Sheffield woman suffering from endometriosis was not diagnosed for 13 years
Chloe Burbeary first noticed something was wrong when she was 12 - but it would be a long and painful 13 years until she was diagnosed with endometriosis.
As a Sheffield teenager, Chloe experienced pain in her abdomen that was so severe that she had to take days off school, and was told by doctors that it was just a bad period. In fact, she had endometriosis.
Endometriosis is a condition where tissue similar to the lining of the womb grows in other parts of the body, causing extreme pain, aches and fatigue.
Chloe, who was diagnosed at 25 and now wants to raise awareness about the condition to improve diagnosis and help young sufferers feel less online, said: “Women are not believed when they talk about it because it is considered part of a women’s problem. It’s taboo.
"Even women think it’s just a bad period.
"I had to stand my ground to get diagnosed, you have to be your own advocate.”Roughly 200 million women globally have endometriosis, and Chloe estimates that there are only about 200 medical specialists for the condition worldwide.
She added: "There is so much misinformation, even about the definition of endometriosis.”
Chloe’s symptoms have got progressively worse over time.
The 30-year-old, of Meersbrook, said: “I don’t look sick, but I’m in agony every day. My base line for pain is 7/10 without tramadol.
“I experience extreme fatigue, I wake up after eight hours sleep and feel like I haven’t slept.
“Sometimes I cough up blood.”
Chloe said that because she didn’t feel supported by the NHS, she turned to Facebook groups dedicated to women with the condition.
She said: “Without the groups you feel very alone.
"Finding someone you have that in common with helps, you both understand why you can’t meet up.
"Even my family don’t understand it, but everybody tries.”
While endometriosis is not recognised as a life threatening condition, complications from the disease can be fatal and some women with the condition have taken their own life.
Chloe added: “It has a massive impact on your mental health.
"You just have to carry on and take it day by day.”
Chloe thinks that for other young women to avoid the same experiences she had, the condition needs to be taken more seriously.
She said: “Funding into research is needed and GPs should have some course on endometriosis on how people should be treated.
“There are guidelines but they never follow them.
“There should be a team for just endometriosis patients.
“You need physio after surgery, there should be a chronic pain team, and people for your mental health.
"If we can get the next generation diagnosed quicker that would be a victory.”
Chloe felt she was shown a lack of care by medical staff.
She said: “I’ve been told I’m only there for the drugs.
"I need morphine to help still the pain, most days my pain is a 7 out of 10.
"The first specialist I saw told me my endometriosis was minimal, a later specialist told me it was everywhere. It can’t spread that fast.”
After having three ablation procedures, in which lasers are used to treat the condition, Chloe is now waiting for an excision operation, which cuts out the visible endometriotic tissue.
However, her operation in Manchester has been postponed due to Covid-19 and she is not sure when it will go ahead.