‘My decade-long battle with endometriosis cost me a second child’
When Sabrina Christou, 41, was admitted to A&E in 2012 with excruciating pain across her middle and up her back, she knew there was something seriously wrong.
That year, she went to A&E five times. “Not one single time I was there did anyone mention the word ‘endometriosis’. They didn’t have a clue what it was.”
It wasn’t until Sabrina found herself in a wedding dress fitting room later that year that the penny dropped. She got chatting to the woman taking her measurements, who said she had endometriosis and that the bride-to-be’s symptoms sounded incredibly similar.
“I told her about A&E, the pain, the bleeding from my back passage, and being sick – she thought I had it too.”
Endometriosis affects 1.5 million women according to The National Institute for Health and Care Excellence (Nice). Up to half of women who can’t have children have the condition.
It causes cells from the lining of the uterus to grow elsewhere in the body, leading to chronic inflammation and organs sticking together. Often likened to the cramping experienced in period pain despite it occurring at any time (not just during menstruation), endometriosis is one of the top 20 most painful health conditions out there according to the NHS. That’s alongside broken bones, a slipped disc, a heart attack and appendicitis.
Only last year did the Conservative government launch its first ever ‘Women’s Reproductive Health Survey’ to understand just how much pain women experience during their menstrual cycle.
Sabrina was diagnosed with stage four endometriosis over a decade ago now. But even after a long series of operations, scans, and futile referrals, she’s still suffering and faces the very upsetting reality that her chances of having a second child are incredibly slim.
‘I was told to have children as soon as possible’
In June 2012 Sabrina underwent her first laparoscopy to have the lesions and scar tissue which were causing the pain lasered off. But she was still left with scar tissue on her bowel.
“Apparently I needed different ‘prep’ and a specialist surgeon for that. My first operation was just with a general gynaecology surgeon.”
After she was married, Sabrina went on contraception. But upon hearing the advice of her doctor – that she should have children “as soon as possible” – she came off it and in 2015 started trying for a baby.
The NHS admits the link between endometriosis and fertility problems “is not fully understood”. The belief is that the condition can damage the fallopian tubes and ovaries.
Sabrina had her first daughter at 31. Four years later, she and her husband tried for another. But this time, it was a lot harder.
‘The pain is 10 times worse than childbirth’
The two eventually went to a private fertility clinic in 2020 and spent ￡400 on a scan. It showed that Sabrina’s tubes were blocked and so IVF wouldn’t be successful.
At that point, she knew she would need to have another laparoscopy to unblock her tubes. So in the autumn of 2022, that’s what she did – but unlike her first operation, this time under the knife had debilitating consequences.
She said: “After surgery, I was in much more pain than before. I couldn’t work, I couldn’t pick my daughter up from school, I couldn’t sleep. I resorted to taking painkillers constantly but it wasn’t really working.
“It was horrendous. I can’t express to people how awful it was. It wasn’t life. I’d ring the hospital up in tears asking for help.
“Endometriosis pain is ten times worse than what I experienced during childbirth. When I was going into labour, my mum didn’t think I was because I just looked a bit uncomfortable. It was nothing compared with my endo pain.”
Sabrina’s hospital in September 2022 was Lister Hospital in Stevenage, which is British Society for Gynaecological Endoscopy (BSGE)-accredited and a specialist in endometriosis. But when she rang them in tears, they told her if she was in pain she should go to A&E.
“They’re supposed to be specialists. I knew A&E wouldn’t know what I needed. They can’t do anything.
“Now, I’m still with an NHS trust but I can ring them up and the secretary will get the nurse to call if I’m in pain.”
Sabrina has since lodged a complaint through the Patient Advice and Liaison Service (PALS) against Lister Hospital.
A spokesperson from the East and North Hertfordshire NHS Trust, where the Lister Hospital is located, said: “We are very sorry for the impact this has had on Ms Christou. Although East and North Hertfordshire NHS Trust is a BSGE-accredited endometriosis centre, we are not an NHS England specialist commissioned centre and are not commissioned to offer the surgery that Ms Christou requires.
“We advise anyone experiencing severe pain to attend A&E to receive urgent pain management. We referred Ms Christou to an NHS England specialist commissioned centre for endometriosis surgery, so she could receive the appropriate care as per the current national guidance.”
None of the ‘holistic’ TikTok cures worked
Feeling helpless, Sabrina embarked on a series of desperate attempts to find alternative ‘therapies’ and ‘holistic’ solutions. Family said she could just fix it with some yoga or a new diet after watching TikToks, but the ‘holistic’ approach certainly doesn’t work for every woman – and it hasn’t for Sabrina.
She paid to see a number of different consultants, forking out ￡75 a session for a pelvic floor physiotherapist and ￡350 for a dietician and a further ￡100 on supplements ￡350 but nothing worked.
“When you’re in pain, you’ll spend anything but these alternatives were just something to do to make me feel like I was helping myself. I knew it wouldn’t stop and that I had to do something.”
Still waiting for a third operation
The only solution left was another operation, which she is still waiting for, having applied for it in June 2023.
Sabrina needs a laparoscopic excision, a surgery that removes endometriosis using a thin tube with a camera at the end. She also needs a segmental resection of the bowel and a bladder cystectomy. “I’ve got loads of ‘endo’ left over from my previous surgeries,” she explains. “I have to have four surgeons in my surgery. It’s going to be an eight-hour procedure to remove big cysts, called endometriomas, that are filled with blood. My ovaries are stuck to my pelvic wall. They’re going to try and remove all this but there is still, unfortunately, a danger of it growing back.”
She is currently on a gonadotropin-releasing hormone injection and hormone replacement therapy (HRT) patches to ease the pain in the interim. It requires up to four doctors appointments a week to maintain.
There is now a risk she might have to stop taking it, which means more unbearable pain. She was told the injection, which should only be taken for six months at a time per its licence, has now caused her bones to deteriorate.
“The fear of going back to that pain is so high,” said Sabrina, shuddering at the thought. She was given a scan in November 2023 and is still waiting for the date of her next surgery.
0.1 per cent of eggs left
Initially, Sabrina set up a Go Fund Me to try and raise money for private surgery in order to get ahead of NHS wait times. But she would need to raise around ￡18,000.
She even considered going abroad to have her surgery in Cyprus or Romania to make it cheaper. She says: “The delay in NHS waiting times has meant that I can no longer pursue the option of having a second child because I’m still waiting for a date for my surgery on the NHS.”
The last report she received from the NHS in January 2023 based on an MRI scan told her she had blood-filled cysts, with one as big as 6cm on her left ovary. She had 0.5 per cent eggs left in 2020 and now it’s closer to 0.1 per cent.
“I would probably need donor eggs if I did IVF. I don’t think I could put myself through another medical process without a guaranteed result.”
While she’s been waiting for her third operation, Sabrina has found out she also has adenomyosis – which is where tissue grows in the lining of the womb. This means she now also needs a hysterectomy.
It’s fair to say Sabrina’s decade-long battle has completely changed her life. She now has a thyroid problem and is on beta blockers.
“I used to have my own cake business which I did on Thursdays and Fridays as well as on weekends but I stopped taking orders in September last year. I didn’t want to let people down. I also work part-time for a recruitment advertising agency in central London. The constant medical appointments have made it impossible for me to work full-time – if I didn’t have endometriosis, I would still be there full time.
“I’ve been going through all this while all my friends are just living their lives.”