A Belfast woman has spoken out about the reality of living with endometriosis as her latest surgery has been cancelled three times.
Francesca Acharya was 12-years-old when she started experiencing symptoms of the long-term condition.
Her periods were so heavy she couldn’t leave the toilet. She suffered from diarrhoea, excruciating rectal pain, sickness, tiredness, mood changes, irrational behaviour, headaches, low concentration and fainting.
Now, fourteen years later, Francesca is still suffering from these symptoms as a result of this debilitating condition.
And the long term effects are also of great worry.
Francesca, originally from London but living in Belfast, spoke to her GP as soon as the symptoms began.
She was put on the contraceptive pill, then said she was “swapped to another and another and you get the picture until you find one that suits after seven attempts later.”
At her first gynaecology appointment, aged 17, Francesca said: “They told me all my symptoms were made up and it was all in my head.
“This hurt because it seemed nobody believed me and even the doctors thought I was making it up.”
But Francesca’s smear test results showed abnormal cells, marking the start of what would be a long, and still ongoing, journey.
It was only after her second surgery, aged 22, she was finally diagnosed with endometriosis.
What is 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 is a long-term condition that can affect women of any age.
Francesca was diagnosed five years after investigations started. And research shows there is an average of 7.5 years between women first seeing a doctor about symptoms and receiving a firm diagnosis, according to Endometriosis UK.
The condition affects roughly 10% of women and girls of reproductive age globally. But there is no cure for endometriosis and it can be difficult to treat.
The NHS says the treatment available aims to ease symptoms so the condition does not interfere with daily life.
Something which Francesca knows about all too well.
‘There are times when I just sit and cry’
Francesca has undergone three surgeries in total to try and relieve the pain she experiences daily. She has also completely changed her diet, while using remedies and Be You patches.
She is currently in induced menopause, which can increase the risk of osteoporosis and other conditions.
But as the 26-year-old said: “Do you not be in pain, or do you damage your body?”
Working remotely as a program ready trainer helps Francesca manage her pain, but on some days, she is too ill to cook, go to the shops, or even sit in the bath.
So, when living with endometriosis, she said “you lose your independence a bit.”
Francesca said: “Mentally this is draining and having to remain positive each day becomes difficult.
“It’s heart-breaking to not even be able to do small daily activities or things you love because of the pain.”
Doctors believe Francesca’s endometriosis has spread from her uterus to her right ovary – which could affect her fertility.
“There are times when I just sit and cry,” she said.
“You just want the same opportunities as everybody else.”
Francesca needs surgery again to remove the existing cysts, and may have to use a stoma bag due to the endometriosis on her bowel.
Her surgery has been cancelled three times, and there are now long waiting times for NHS surgery due to Covid.
She said: “I’m quite good at just sucking it up and getting on with it. But I’m at that point in my life now where I just can’t.”
So, Francesca has set up a GoFundMe page to try and raise money for private surgery, with any money left over going to Endometriosis UK.
Even if people cannot donate, the 26-year-old said she wants to raise awareness of her condition so both men and women can understand “it’s not just a bad period, it impacts your life so much more than people imagine.”
She also wants to encourage women to ask for smear tests if they are concerned.
Francesca said: “I was so lucky my doctor let me have a smear test at 17. That’s why I’m a big advocate for them.
“If I can go and do it at 17, anyone can. It shouldn’t be a taboo subject. Girls aren’t going to feel more comfortable about it unless we’re talking about it.
“It’s draining and humiliating just being questioned, but if I’d waited until I was 25, how much of a change would I have missed?”
You can visit Francesca’s GoFundMe page to donate or for more information.
For more information about this condition, you can visit the NHS website or Endometriosis UK.
For the latest breaking news straight to your inbox, sign up for our newsletter here.