IVF after a long journey to diagnose endometriosis

After a long journey to diagnose her endometriosis, Emma’s instinct was vindicated but needed IVF to conceive her son:

“When we decided to try for children, I came off the contraceptive pill. Soon after, I started to experience pain during and after my periods. With symptoms similar to a urine infection, my GP prescribed antibiotics, but the following month the same symptoms returned. I was given more antibiotics, in case there was an infection present.

“When it happened again the following month, I saw a different GP. She tested my urine, and when the results came back as clear, asked if I’d ever heard of endometriosis, which can occasionally affect the bladder. She suspected I had this condition and referred me onto a gynaecologist for further tests.

“I had to wait for my appointment almost six months. Over this time my pain got worse and worse. It was utterly horrendous. I felt like I had a constant urine infection, and my legs, back and stomach felt achy and painful for most of my menstrual cycle, not just when I bled. I wore a TENS machine to work, to cope with the pain, and took strong painkillers.

“I kept a pain diary that I’d read would be useful for meeting the gynaecologist, helping them to spot patterns of symptoms. But unfortunately my appointment didn’t go well. The consultant I saw wasn’t very sympathetic and didn’t suspect endometriosis from their examination. Instead they asked me to go away for four months and keep another pain diary in their preferred format.

“On my follow-up appointment six months later, I saw a different consultant who referred me for keyhole surgery. I was finally examined under a general anaesthetic and the surgeon did detect endometriosis, but as it was so close to my bladder, they felt it was too risky to try to remove in case it caused further damage. Instead they recommended that, as we were trying to conceive, I should focus on that, as the change in hormones during pregnancy can alleviate the symptoms.

“I was so distressed, as by now, I found sex painful. But we tried, and I continued to monitor my pain. I had a follow-up appointment four months after my surgery, this time seeing the first consultant again, who still didn’t believe that my symptoms were caused by endometriosis and discharged me.

“I couldn’t go on like this. I decided to pay for a private gynaecology appointment, to get a second opinion. This time I met Alex Swanton of Berkshire Gynaecology, who immediately suspected endometriosis and booked me in for another laparoscopy, which would allow him to diagnose and remove any endometriosis deposits. When I came round from the procedure, he told me I did have quite extensive endometriosis, covering my ovaries, pelvic area and also my bladder. He had removed lots of it, but also felt it was too risky to operate on my bladder. Although disappointed, my overall feeling was one of relief. I felt vindicated that I hadn’t been making it up.

“Importantly, he also referred us on to receive IVF, knowing that with such extensive endometriosis, it would be hard for us to conceive.

“We chose to be treated at Oxford Fertility and were so glad we did. The staff were so lovely. The nurses were all kind, reassuring and optimistic without being unrealistic and always took the time to answer my questions. Blood tests revealed that I had a reduced ovarian reserve, probably caused by the endometriosis on my ovaries. Although I was only 31, the levels were that of someone at the end of their 30s. Despite this, the IVF procedure went well, and we couldn’t believe it when it worked the first time and we welcomed our baby son into the world just over a year ago now.

“I was so used to getting bad news, I didn’t think it was going to happen. He has changed my world, I just adore him and still can’t believe that he is my son. Although my endometriosis could return in the future, I am currently pain-free and enjoying every moment of it.

“I am one of the lucky ones. Having a GP who suspected endometriosis early and referred me onto gynaecologists set me on the right path. It was frustrating trying to get my original gynaecological team to take me seriously. I would say to others, if you suspect anything is wrong, see your GP and don’t go away from any appointment with unanswered questions. The earlier endometriosis is detected, the easier it can be removed.”