Endometriosis Awareness Week: ‘Hopefully in the future nobody will have to suffer as much as I have’
- Credit: Archant
With Endometriosis Awareness Week running from today until next Sunday, Comet editor Nick Gill speaks to sister and work colleague Cat Lennon about how her life has been turned upside down by the condition.
Endometriosis is a word that meant nothing to me until my sister Cat was told she may have it in June 2016.
Ever since, I have wondered how this could be when you consider it is estimated one in 10 UK women have the condition.
What it is, for the many that won’t know, is when cells like the ones in the lining of the womb are found elsewhere in the body. Undiagnosed and without treatment, it can spread and affect vital organs, and cause insufferable pain.
In Cat’s case it took 16 years – almost half her life – to be diagnosed, despite countless trips to a Stevenage doctors’ surgery where GPs thought she had irritable bowel syndrome and prescribed her all sorts of different medication.
Typical symptoms include painful periods and sex, prolonged bleeding, back or leg pain, and extreme tiredness – but there are many more, and for some women there are no symptoms at all.
On average it takes 7½ years for a woman in the UK to be diagnosed, with many left unable to have children as a result.
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Cat has Stage IV (severe) endometriosis – her consultants at Luton & Dunstable Hospital have described it as the worst case they’ve ever seen – and she has had three operations so far.
This includes 9½ hours in theatre to remove the worst of her endometriosis – 100 times thicker than average – and using an ileostomy (colostomy) bag for five months to allow her bowel to repair itself.
The next, provisionally scheduled for this April, will be to have one of her kidneys removed due to the condition leaving it with six per cent functionality.
Reflecting on the pain she has experienced as a result of endometriosis, the 31-year-old – who is the Archant group SEO manager based at the Comet’s offices in Stevenage – told me: “I have had excruciating pains which sometimes left me in a heap on the landing of my house, not being able to move.
“The heat pad I used to use would work for maybe half an hour, while paracetamol and ibuprofen didn’t touch the sides.
“It’s had a huge impact on my life – it’s hard to believe I am losing a kidney because of endometriosis. It has covered my bowel, my uterus, my ovaries, my rectum, my fallopian tubes, the tubes for my kidneys and the kidneys themselves.
“And, because there is no cure, my body will be fighting this forever.”
On March 24 a worldwide EndoMarch will take place to raise awareness, with all of our immediate family taking part in the London walk which starts at 1pm.
For Cat, raising awareness has become her focus.
“I want to be able to share what I know with other people as I would hate for someone to go through what I have,” she said.
“You just think you’ve got really heavy periods and suffer pain. You don’t know that these symptoms aren’t normal as women don’t speak about periods – if they did I would’ve got diagnosed sooner and I would’ve thought myself that something wasn’t right.
“There needs to be education for girls in schools so they know that if you have ridiculously heavy periods, you get clotting or it lasts for longer than three days then that is not normal – mine lasted for seven to 10 days and sometimes two weeks.
“I think we can expect more from doctors, and hopefully raising awareness through annual campaigns will help. My female GPs didn’t refer me, but when I changed to a male one he did – so it’s about educating all GPs.
“Hopefully the future for me will be a healthier one, with regular scans and treatment to ensure it never gets as bad as it has again.”
Husband Chris will be running the Brighton Marathon on April 15 for Endometriosis UK, while I’ll be doing my bit for the same charity at the London Landmarks Half Marathon the day after the EndoMarch – on March 25.
As for Cat, walking 2.5km through the centre of London will be a huge achievement in itself.
“I can’t run a marathon because my condition doesn’t allow me to,” she said.
“But for me to do the march I will feel really proud. I want to try to give something back to those women who are struggling, to thank the consultants who have helped me so much and to raise awareness.
“All it takes is for one person to hear about the march and think ‘what’s endometriosis’? They might read up about it and think they have it or know someone who has. If that happens, we’ve done our job.
“I have had people come forward after reading about my endometriosis and go to their GP to discover they have it.
“If we can raise more awareness then hopefully in the future nobody will have to suffer as much I have. One in 10 women suffer from endometriosis in the UK and, for a condition that is barely known, that simply isn’t right.”
And if you do want to sponsor me for the London Landmarks Half Marathon – with all donations match-funded by mine and Cat’s company Archant – see virginmoneygiving.com/NickGillEndo.