“THIS is no exaggeration - I sometimes blackout from the pain.”
As Charl Davies describes the various “horrific” symptoms of endometriosis and recalls how it took her 17 long, hard years to get a diagnosis, one thing is clear: she is not looking for sympathy.
She wants to raise awareness, push for greater research and help others who are battling this chronic and debilitating condition.
In endometriosis, cells similar to the ones that line a woman’s womb grow elsewhere in the body – often attaching to internal organs.
They react to the menstrual cycle each month by shedding and bleeding.
Yet there is no way for the blood to leave the body, causing inflammation, chronic pain and fatigue.
It can also lead to infertility, with added tissue in the womb creating a hostile environment for conception.
Ms Davies, who is a tattoo artist from Blaenavon and has featured on hit MTV show Just The Tattoo of Us, says she has spent more than a decade having her “feelings invalidated”.
During frequent trips to the hospital and her GP, her condition was “brushed off” as period pains.
Charl Davies with reality TV star Joey Essex during filming.
It all started when she was ten, after hitting puberty.
“I had these horrifically painful symptoms, sometimes I was just bent over in so much pain," she said.
“I have ended up in hospital with so much pain, but it is so difficult to get a diagnosis. It takes so long and without that diagnosis, there is no adequate pain relief.
“It is terrifying because unless you get a diagnosis you don’t know what is happening or what is going on.
“I honestly felt like I was going crazy, that I was making the pains up in my head. I was going to the doctors with symptoms of a water infection and they would test it and it would come back as negative and it makes it looks like I made it up, but it was the endometriosis affecting my bladder.”
She says she would often have to be hospitalised because she was in so much pain.
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After years of being told that health professionals could not find a cause for her pain, Ms Davies asked for laparoscopic surgery in 2012 - it involves a small telescope being inserted into the abdomen to look directly at the tissues.
But when Ms Davies woke up, she was told by surgeons that they had not found any signs of endometriosis.
It’s a story Endometriosis UK – a charity that helps provide support and information - have heard all to often.
A spokeswoman for the charity said: “It currently takes on average a shocking seven and a half years to diagnose endometriosis, a statistic Endometriosis UK is determined to help drive down to ensure that everyone affected by endometriosis receives the right care at the right time.
“Without a diagnosis, not only can the disease progress, but women cannot put a name to their symptoms impacting on their education, employment, relationships and mental health.”
Eight years on and Ms Davies was still suffering from “unbelievable” pain.
“I event went to one genecology department and they actually said to me, ‘Sometimes we just never find out the reason for our pain’.
“I just felt absolutely broken. I said I wanted another laparoscopy and I want it performed by a specialist. I was only able to request that because I had obsessively researched my condition.”
She was put on a nine-month waiting list but decided to see an endometriosis specialist privately to confirm her condition before the surgery.
“I had to pay £150 and after twenty minutes, the specialist agreed with me," she said.
“I could have paid £4,000 to have surgery in two or three weeks, but I just didn’t have that money.”
She is self-employed and runs a tattoo studio in Blaenavon – Tattoos by Charl Davies – and could not afford to take time off work.
In February this year, she was able to have another laparoscopy.
“This time around, it took them over two and half hours to perform a 35-minute operation because there was so much to take away.”
A laparaoscopy involves making incisions into the abdomen.
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Once a build-up of cells is identified, surgeons can destroy and remove the endometriosis.
Unfortunately, the condition is currently incurable.
“It is very likely to come back and just today (April 28) I have had another flare up.”
Ms Davies also has autism and she says the combination of both has left her in a “poor mental state”.
“It just feels like your living to exist at times, which is horrible.”
She says routine is very important to managing her autism.
“Routine is something that you absolutely need when you are autistic because you need that structure, constantly, but when you are in pain, it limits your function so much.”
Cruelly, the treatment can rob of her of the thing she loves doing most.
“If I take strong painkillers, like morphine or tramadol, I can’t do my job because I am so zoned out.
“It is either take the painkillers, miss out on work and money or don’t take them and fight through the pain.”
Charl tattooing her mother at her studio in Blaenavon.
It means that when she has been away filming for MTV, she has had to take period-delaying tablets.
Though she points out that the pain is “pretty much constant” throughout the month, it hits hardest during her period.
“It is awful because there are so many women now with it, it should be common knowledge.”
According to Endometriosis UK, around one in ten women have the condition.
“I just want health professionals, because it is such a common disease to educate themselves on it, so that when people approach them, they are not brushed off or invalidated.”
A spokeswoman for Endometriosis UK added: “GPs play a pivotal role in supporting women with endometriosis, and it’s vital healthcare practitioners receive training and guidance to help them spot signs of endometriosis and support women receive a diagnosis.
“We are delighted to be working in partnership with the Royal College of GPs (RCGP) to provide resources covering the symptoms, signs and management of endometriosis, helping GPs support earlier diagnosis of the disease. We hope this will help reduce diagnosis time and ensure women are given the support they need to help manage their condition”.
Ms Davies added: “I want to push for a cure, possible research for funding perhaps.”
“Unless we all keep shouting about it, nothing is ever going to change.”
- If you believe you may have symptoms of endometriosis or are looking for support, visit Endometriosis UK.
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