Endometriosis, characterised by severe abdominal and pelvic pain, affects 1.5 million women in the UK – a similar number to those affected by diabetes. But what isn’t spoken about enough is how it can affect fertility, according to endometriosis campaigner, Nadine Lewis. Careers consultant Nadine, 34, told Express.co.uk about how her long battles with endometriosis have impacted her attempts to start a family, and how misleading medical information can come back to haunt endometriosis sufferers in the future.
Describing a series of hospital trips and her eventual endometriosis diagnosis, Nadine recounts how she and her husband resolved to try fertility treatment.
She recalls that she was aware that severe endometriosis can hinder conception, but in 2017, she became eligible for NHS funding.
She remembered: “It wasn’t very tailored to my endometriosis, which was unfortunate.
“Things didn’t work with the first transfer.”
However, she was overjoyed when the second transfer did produce results in 2018.
She continued: “We had our first scan – I remember being on the Tube, going to London Bridge.
“We had our ‘baby on board’ badge that I was wearing, waiting for the scan.
“And then, all of a sudden, I remember being rushed to another room – four or five medical professionals just speaking to each other, looking on the monitor.”
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She relayed: “And then they said, ‘Nadine, I’m really sorry, it’s ectopic.’
“I knew what that was, but my husband didn’t, so I had to explain to him.”
She explained that the endometriosis in her fallopian tube, which hadn’t been removed by previously scheduled surgery, was “stopping the pregnancy moving, growing”.
She added: “There really was no option, which was very disheartening to us, because it was our first pregnancy, and it was just going to all be over.”
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Nadine and her partner geared up for two more rounds of IVF treatment, which were tragically unsuccessful.
However, as they persevered in their fertility treatment, the endometriosis put another obstacle in their way – Nadine was admitted to hospital with fluid in her lungs, and underwent a procedure to drain the pleural effusion.
In late 2019, Nadine was diagnosed with thoracic endometriosis. This rare form of the condition is characterised by endometriosis found in and around the lungs.
She said: “After just two or three weeks, the fluid started coming back, and it affected me in many ways.
“I could be just walking up the stairs, or walking across the road, and all of a sudden I was struggling to breathe and it feels for me sometimes like my body is drowning itself, like my lungs are dipped in all this fluid that’s just moving higher and higher.”
With her constant battles with multiple forms of endometriosis, Nadine maintains that “one of the biggest things that I’ve learnt in relation to endometriosis, is it actually can really have an impact on your fertility”.
She added: “Not everyone wants to have kids – and that’s absolutely fine – but just to be aware of the impact that endo[metriosis] can have is so, so important.
“For me, I’ve learnt the hard way, unfortunately. I’ve been doing IVF for nearly five years now, only had a positive pregnancy test once, which was ended because of the endometriosis.
“I’ve done seven transfers, and only one has led to a positive pregnancy test.”
She said, emotion clearly overwhelming her: “We have to go through all of this in the hope of having a child if its possible, and some people have been told, ‘Look, your best option to stop the pain and the symptoms of endometriosis is to have a hysterectomy.’
“There are so many women in their twenties and their thirties being told this when they haven’t even had a chance to think about their futures. It’s devastating.”
She added: “They haven’t had a chance to meet anyone, or to have their eggs frozen because it’s not on the NHS or they can’t afford it. It’s just terrible.”