Harrogate women call for endometriosis to be taken more seriously
Around 1.5 million women in the UK are currently living with the condition but it can take up to eight years to diagnose
Last updated 2nd Mar 2021
Two women from Harrogate are calling for endometriosis to be taken more seriously, after struggling to get their diagnoses for years.
Endometriosis is where cells similar to the ones in the lining of the womb are found elsewhere in the body. It can cause a chronic and often debilitating pain as well as heavy periods.
If left untreated it can lead to infertility and bowel and bladder problems.
This week is Endometriosis Awareness Week (Monday 1 March - Sunday 7 March 2021) and it aims to raise awareness about this hidden and often unrecognised condition
Zoe Taylor has three children and is now in her early 40s. She started experiencing symptoms in her early teens. She was "ignored" by teachers and "never believed".
She said: "I remember being told by one of the PE teachers at school when I was about 13-years-old 'If it's that bad you need to go to a doctor' and that's something that resonates with me that a woman wouldn't believe me, wouldn't even believe a child.
"I can actually feel when I'm ovulating because it's a sharp, painful feeling. Then when I'm on my period it's a dull and constant pain. I just want to curl up in a ball."
The condition can be found through a key hole procedure called a laparoscopy, but even then it can be hard to find the endometriosis cells.
Zoe had two procedures and both times was told nothing was wrong with her. It wasn't until she was struggling to have children that she was finally given her diagnosis.
"It was only when I went to a Bupa hospital when I was struggling to have children that they found I had endometriosis. It was on the back of my womb so it wasn't easily seen in the routine operation.
"I was quite young when I started trying for children. At 25 that's quite young for people nowadays. If I had waited until I was in my late 30s or early 40s to have kids, who knows what situation I would've been in".
Because endometriosis can be found in a variety of ways and shares symptoms with other conditions, diagnosis can be difficult and often delayed.
Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis, according to Endometriosis UK.
Sarah-Lou Harper has two children and says she was "lucky" to get her diagnosis in four years.
She told us: "It took a lot of pushing, begging, loads of appointments. I was being told by doctors that there was nothing wrong with me and that it was all in my head.
"There needs to be a lot of change to help women who are going through this.
"It's really upsetting and demoralising to be told that you just need to live with this. There's a massive taboo with women's issues and the fact it's still called 'women's issues' is a problem in itself.
"They would say to you 'your scan is clear, you're fine, go on your way' and that's that. You have to keep going back and fighting for that treatment."
Sarah-Lou finally got her laparoscopy which found she had endometriosis on her bladder, womb and bowel. She had to wait another three years to have it removed.
"I was left knowing that there's endometriosis in by body which was causing the pain I'd been suffering with for years. It took three years to get that surgery.
"I've had to have multiple surgeries because I had it in so many places. My first surgeon couldn't remove it from my bowel so I had to go to a specialist in York.
"I'm now seven weeks post-op so it's still early days to see if that surgery has worked.
"It's a battle. I wish I could say all these other women it's not going to be difficult to get the diagnosis but that's just not the case. That's why there needs to be more awareness of this disease."
Each month endometriosis reacts in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. The impact can also be felt for life.