Living through the pain: A life with endometriosis

Years of misdiagnosis

Her GP at the time said these symptoms were simply the result of severe menstruation and prescribed Katie various contraceptive pills - one of which she remained on for the next 15 years. Yet throughout this time she continued to experience painful and heavy menstruation cycles, until in 2014 she realised she had to take greater action.

"I asked to be referred to a female GP for screening. She immediately diagnosed me as likely having endometriosis or polycystic ovary syndrome."

New treatment, temporary success

Katie’s new GP referred her to a local Gynaecological Clinic for a laparoscopy, where her endometriosis was found to be so severe her consultant fitted her with a Mirena IUD coil to help prevent it from returning.

Initially the coil had the desired effect, with Katie’s symptoms significantly reducing. However by mid-2017 they had unfortunately returned and far more severely – with both her physical and mental health declining as her depression worsening from the effects of her endometriosis.

Life-changing decisions

In October 2018 Katie was referred to a local specialist facility where she underwent a lower abdomen MRI. The results showed the endometriosis had grown out of the womb and attached itself to my large intestine.

Katie underwent a sigmoidoscopy with a bowel consultant the following month, who advised her on having her bowel removed because of the extent of the growth, as well as a hysterectomy to further reduce the chance of it returning.

"I had never wanted children and so these procedures were not an issue, yet because of my age, the NHS consultant refused to do the surgery. At this point I became extremely distressed as the pain was both severe and constant."

A glimpse of hope

Through researching other options, Katie and a friend came across The Endometriosis Centre in London. After submitting an online enquiry, Katie was contacted within two hours by consultant gynaecologist Mr Denis Tsepov, who asked her to visit the centre for a consultation.

"After discussing my symptoms and reviewing my medical history, Mr Tsepov advised that despite the severity of my endometriosis he and his team would be able to remove my bowel and perform the hysterectomy. I returned to the centre within a week of having my MRI abdomen scan. Mr Tsepov informed me the endometriosis had grown to my bowel and to one of my ovaries, and was attaching itself to a nerve running down into my right leg. It’s overall size was 10cm in length and 4cm in depth - double the size I was told it was from the MRI scan I had at the local clinic. Both Mr Tsepov and my bowel consultant, Mr Chan, agreed that surgery was required, which was scheduled to fit around my work commitments."

Major surgery for a better life

Katie underwent a hysterectomy and bowel resection under the care of both Mr Tsepov and Mr Chan. The surgery lasted for seven hours, with the bowel resection taking longer than expected as Katie’s endometriosis was even more severe than the MRI scan had shown. She was however able to keep both her ovaries and thankfully didn’t require a stoma bag.

Unbelievably, despite having major surgery Katie recovered so well she was able to go home only five days after her procedure. She attended two follow-up appointments at The Endometriosis Centre, with Mr Tsepov and Mr Chan both happy with Katie’s progress.

"Mr Chan told me my bowel was one of the worst cases of endometriosis he had seen, and couldn’t understand how I had been able to go to the toilet all this time."

Feeling positive and pain-free

Most importantly though, after years of experiencing ongoing pain that had become completely detrimental to her day-to-day life, Katie can now look ahead to the future with a far more positive frame of mind.

"I cannot thank Mr Tsepov, Mr Chan and their team enough for what they have done for me - I will be forever grateful to them all. I woke up from surgery and felt like a completely different person. I felt lighter both physically and mentally, and now feel no pain at all. My skin is better, my weight is more manageable, and I am able to go to work and socialise without many of the worries I had before.

All I can hope for now is that a better understanding of endometriosis and its symptoms is shared across the healthcare community, as no woman should have to feel the pain and anxiety I did for such an extended period of time if treatment is available."

Special thanks to Mr Denis Tsepov, Mr Christopher Chan and Katie.