Woman in agony can’t get an operation because of Covid-19
Sophia Sammut’s condition has left her bedbound, but the NHS cannot currently treat it because of the coronavirus pandemic. Health correspondent Mark Smith reports
AWOMAN who has pain “worse than childbirth” each month says the coronavirus pandemic has robbed her of a chance to treat it.
Sophia Sammut, 31, has been diagnosed with stage four endometriosis, a condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes.
Her incurable disorder is so severe that it has fused her bowel and kidneys to her womb.
She also has eight 6cm tumors covering both her ovaries.
But an elective NHS operation to remove the disease has been put on hold due to the Covid-19 outbreak, leaving her in a frequent state of agony.
“Every month I go through the same pain, if not worse, as childbirth for each day of my cycle,” said Sophia, from St Mellons, Cardiff.
“Blood gathers in my stomach with nowhere to go. I am basically internally bleeding. This disease has taken my smile, my happiness, my ability to enjoy simple things in life like socialising with my family and friends and doing the things that I love.”
Sophia said she started her periods when she was just nine years old – a “common trait” among women in her family.
“When most of my friends were running around freely in primary school, I was worrying about my period,” she recalled.
“From the age of around 16, I started to get very heavy and painful periods and would visit my GP surgery numerous times a year to complain of severe abdominal pain.
“This was dismissed as nothing abnormal and was almost always sent away with some form of medication to try and help alleviate the pain.”
When she reached her early 20s, Sophia suffered multiple heartbreaking miscarriages.
She said: “It was never looked into as to why this kept happening to me, and I was never given any counselling by my GP or the hospital. I was simply sent on my way with a leaflet on how to look after myself.
“Follow-up routine checks after a miscarriage are always mentioned, but unfortunately they are not actually followed up on.
“The fact that most of the time I was left to deal with my loss alone, or go through the emotional rollercoaster at such a young age, makes me now understand my mental health issues.”
In November 2018, at the age of 29 following the last of her 12 miscarriages, she demanded that her GP and the NHS as a whole looked into it further.
Around four months later, she was informed that she might have kidney stones. Along the way she was also told by medics that she could be suffering from irritable bowel syndrome (IBS), pelvic inflammatory disease (PID), gas build-up, severe constipation and UTI infections.
She said: “Following this kidney stone question mark, they did an ultrasound in the gynacology unit at the University Hospital of Wales and found no stones at all. I was then sent on my way again with ibuprofen and co-codamol.
“During May and March 2019 I also had two further ultrasound scans on a gynacology ward. Both scans came back that everything looked fine and I was told my cervix looked fine also.
“The consultant’s advice was ‘just get pregnant and we will take it from there as we cannot find a reason why.’
“I left the hospital in disbelief as it was not exactly the information I was expecting to receive.”
Sophia said she started to blame herself for her multiple failed pregnancies, one of which was discovered at 16 weeks’ gestation.
“When you suffer so many losses and you get told you are fine, you start to take it out on yourself,” she said.
“You feel worthless. Why am I here? What am I doing wrong? What is wrong with me? You pay the ultimate price in the end because it affects your mental health immensely.”
Sophia said it got to the point where she had to give up the job she loved because she was constantly needing time off of work due to the severe pain.
“Sometimes I would even have to have an ambulance from my workplace or home because it was that excruciating that I would not cope any more,” she said.
Sophia said the pain got even more debilitating.
“At one stage I remember it got so bad that I was on all fours, and the pain was so severe it was taking my breath away. I actually snapped the post off of my bed after holding on so tightly.”
After two months in lockdown she said she forced herself to go to A&E against her family’s wishes. To her surprise, she was put on a bed within four minutes of being there.
“The nurse that came to my bedside was the most inquisitive nurse I had ever met and I was so thankful for her,” said Sophia.
“That nurse asked me so much about my past and my fertility history – that had never happened before.
“My responses left her speechless and the concern in her eyes told me ‘I’m going to help you’. Shortly after I was sent for a full CT scan. I waited for around eight hours and finally my name was called.”
The nurse told Sophia that two large masses had been found on her ovaries.
“I just burst into tears of genuine fear. Here I was by myself with nobody to comfort me.”
The following day Sophia was given a smear and an internal ultrasound. It wasn’t long afterwards that a consultant told her that she had the most severe form of endometriosis.
“I had heard of endometriosis before, but I was not clued up on the illness at all,” she said. “The consultant said stage four was the final stage and that my only option would be surgery to remove the disease.
“Then my world shattered again as he stated that due to Covid-19 the NHS were not allowing elective surgeries to take place and that I was not even able to be put on to the waiting list, which is a minimum of one year anyway.”
Following the spell in hospital, Sophia said she fainted through pain and was left bedbound for five weeks.
“I could not walk, I could not stand straight, I couldn’t even make it downstairs and just about to the toilet,” she said.
“The pain was so debilitating it felt as though something was trying to get out of my body and pull at my insides at the same time.”
With the help of her family, Sophia had a private consultation at Spire Cardiff, where it was discovered that she would need two separate operations.
“The disease needs to be detached from my bowel and kidney, and then the eight endometrioma tumours on both ovaries removed along with the endometriosis taken away from my cervix,” she said.
“The doctor stated that after my first surgery privately, I could then have the second one via the NHS next year once the Government allows them to do so.”
Sophia has now started a GoFundMe page to help raise funds towards the private surgery which she hopes to have before December.
Sophia said: “Endometriosis affects one in 10 women. Something needs to be done so that our daughters, sisters, mothers, aunties, nieces do not have to suffer.
“In England there are over 100 endometriosis specialists and in Wales there are just three.
“Enough is enough. I want my life back and I want to fight for the women all over the world that are suffering from this debilitating disease.”
■ A new campaign – Time To Talk. Period – calling on menstrual wellbeing to be on the curriculum in Wales has recently been launched.