How Joyce’s endometriosis nearly cost her fertility

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A misdiagnosis almost cost Joyce her fertility

Fifteen years after being diagnosed with polycystic ovary syndrome (PCOS), Joyce was devastated to discover her symptoms were caused by endometriosis – a condition which, left untreated, can affect fertility. 

Aged 17, Joyce’s periods became unusually painful, which led her family doctor to diagnose polycystic ovary syndrome (PCOS). Fast forward 15 years, and Joyce and her husband thought now was the time to try for a baby, knowing that it might take a little longer than usual due to her condition. Deciding it was better to know what they faced, they booked an ultrasound at their local hospital.

Here Joyce shares her experience, and how amazing her care was under the care of Mr Denis Tsepov and his team at The Harley Street Clinic.

It was there that Joyce discovered she had been misdiagnosed all those years ago. She didn't have PCOS. It was endometriosis, an often-painful, long-term condition where endometrial tissue grows outside the uterus – a diagnosis which, if caught too late, can mean significant fertility challenges.

Joyce left the hospital in a state of shock. As she read more about the condition on her way home, the shock quickly turned to tears of deep upset. Joyce had heard that endometriosis could cause fertility issues and feared what this would mean for the family that she and her husband wanted to have.

As Joyce's endometriosis was stage two (of four) and therefore considered 'mild', her doctor recommended surgery to divide and remove the endometrial adhesions throughout her abdomen. Joyce felt hopeful for the future as she underwent her operation. However, it wasn't to be. Within weeks of the surgery, the pain was back and as bad as it had ever been.

Referred to a team who specialise in complex endometriosis treatment

A friend at work – a hospital where Joyce was a critical care nurse – recommended a consultant she'd heard of. Mr Denis Tsepov, a Consultant Gynaecologist and Endoscopic Surgeon, ran a specialist Endometriosis Centre at The Harley Street Clinic.

Joyce booked a consultation with Mr Tsepov. At the appointment, Joyce immediately felt reassured as he took a detailed history and carried out a wide array of tests to ensure they knew everything they could about the progress of her condition. After swabs, blood tests, hormone tests and an MRI, Mr Tsepov had a diagnosis and a treatment plan. To Joyce's shock, she discovered her endometriosis was not stage two as she'd been previously told. It had progressed to the fourth and final stage and was affecting her bowel.

Mr Tsepov recommended surgery to remove the adhesions and address her symptoms without the need for a radical option like a hysterectomy. As the endometrial tissue and scarring on Joyce's bowel was so severe, there was a chance that Joyce would need a stoma bag fitted. Joyce said: "I was initially quite upset and worried about the thought of having a stoma fitted, but Mr Tsepov, and his colleague Mr Christopher Chan, Consultant General and Colorectal Surgeon who specialises in endometriosis, really reassured me and made it clear that it was a last resort which they would do everything they could to avoid."

Successful surgery – but the biggest delight was yet to come

The surgery lasted three hours, with both Mr Tsepov and Mr Chan working to remove thick adhesions of endometrial tissue and scarring from Joyce's abdomen. The procedure was a success – with no need for the stoma – and Joyce was feeling better within a few weeks.

But the greatest delight came six weeks after Joyce's surgery, when she and her husband were thrilled to discover she was pregnant. When she shared her news with Mr Tsepov at her next follow-up appointment, he helped her register her pregnancy as 'high risk' with her local hospital to ensure she had the right level of monitoring and supervision.

Luckily, Joyce had a pain-free pregnancy and gave birth to a healthy baby. Joyce said "I am so grateful to Mr Tsepov, Mr Chan and the team at the Endometriosis Centre at The Harley Street Clinic; they reassured me and helped me through my whole journey, even providing advice for my birth at another hospital.

"I was so worried when I was initially diagnosed that I wouldn't be able to conceive, so it was a miracle when I fell pregnant just six weeks after my operation, after being diagnosed with such an advanced stage of endometriosis."

Learn more about the care we offer to patients with endometriosis

This content is intended for general information only and does not replace the need for personal advice from a qualified health professional.