‘The pain was intolerable’ - Calls for more awareness of endometriosis after diagnosis delays
- Credit: Archant
A disease that can affect one in ten women and which has an estimated 200 million sufferers worldwide has for many years gone undetected and unsupported.
That’s the view of a Hethersett woman who is battling to increase awareness of the symptoms of endometriosis.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes. It can affect women of any age and is a long term condition that can cause agonising pain particularly prevalent during menstruation.
It has taken Chloe Kidd 10 years to find the cause of a disease which has had her doubled up in pain and not wanting to get out of bed and even led to thoughts of taking her own life.
“At times the pain was intolerable,” she said.
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“Having my condition diagnosed has lifted a real weight and given me the strength to deal with it on a day to day basis.
I realise now that it is part of my everyday life. I know that there will be good days and bad days but I am so glad to finally find out what the problem is.”
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Over the years, the 23-year-old has had many misdiagnoses with the problems being put down to stress, muscle spasms, urine infections, Irritable Bowel Syndrome and even appendicitis.
“I was 12 or 13 when I had my first period and they were really heavy. I seemed to be constantly in pain,” she said.
Her journey to have her condition diagnosed has involved numerous hospital visits, scans and procedures including a laparoscopy before a locum doctor suggested that endometriosis could be the reason.
Chloe, who works as a receptionist on a neuroscience ward at the Norfolk and Norwich University Hospital, has been prescribed Tramadol to help with the pain and has also changed her diet to take in more fibre.
To help others she has set up a website at www.endowaddles.com along with a podcast on Spotify and YouTube where she has her own channel.
She has also set-up a book giving page in order to raise money to go into print in a further attempt to help others.
“I don’t want other women to have to wait 10 years for a diagnosis,” she said.
Since going onto social media, Chloe has been inundated with messages of support from all over the world and says she has been staggered by the number of sufferers.
One of those is fellow Hethersett resident Kelly-Marie Mendham who has found that a lack of emotional and psychological support exists for those suffering from the disease.
“I guess I had known for years that something wasn’t right. I started my period late aged 16 but the pains I was having were excruciating,” she said.
“The years went by and I thought it was normal as that was what I was told by various doctors.
“The heavy bleeding and painful periods continued over the years. I tried different contraceptives to try and reduce the symptoms.
“After eight years I couldn’t bear it anymore and paid £6,000 for someone to tell me I had endometriosis.
“I’ve been on all the painkillers known. Sometimes a hot bath may help but it’s a matter of riding out the pain which can last hours, days or weeks.
“At times having endometriosis has been isolating, debilitating and restrictive: I have never known adult life without it.
“I think employers should be more aware of it and it should be classed as a disability as it stops you from carrying out normal activities.”
She added: “I’m glad that more people know what endometriosis is and hopefully the current media attention will help pave the way for a new pathway for current sufferers and those it may affect in the future.”