I had so many signs of endometriosis - why did no one listen?

Kirsten’s endometriosis diagnosis was thanks to the intervention of doctors at TFP GCRM Fertility in Glasgow. Why did it take so many years for a condition which debilitated her and affected her fertility to be recognised? 

Kirsten and Elliot's story

Kirsten, 27, lives in Coventry with her partner, Elliot, 31.  

Her periods started when she was 15 and from the very beginning, they caused problems. 

“There was no pattern,” she says. “I had really heavy periods with severe stomach pains and headaches - or no periods at all.” 

Doctors put her on the pill and this, she says, helped to manage her symptoms. 

But when she went to university, things got worse.  

“My stomach pains varied,” she says. “They could be dull or sharp – but they were constant. On a general day the pain was about a seven or eight out of ten. On a bad day it would be 10. I got through the day by taking ibuprofen.” 

The pain and heavy periods began to affect her education, so Kirsten arranged to take a year out from her architecture degree to focus on her health.  

“Things seemed to cool off for a while,” she says, “But when I started back at uni, the stomach pain was too much to handle. 

“I had no energy. I started bleeding randomly to the point where I couldn’t go out anywhere or do anything. It was affecting my studies.” 

Kirsten’s Mum, Nicola, who is a nurse specialising in women’s health, had always worried about her daughter’s periods.  

Over the years, the two women spoke to many doctors, but the message was always the same: periods can be painful – that’s just the way it is.  

“I saw 15 to 20 doctors.” 

When Kirsten met Elliot, he joined the ‘campaign’ to get doctors to listen.  

“To get help you have to be so persistent,” he says. “It felt like we were getting nowhere.” 

Elliot admits that he lost his temper with one doctor.  

“We went to A&E a few times as the ibuprofen wasn’t working,” he says. “One doctor was blasé about Kirsten’s pain and it upset us.” 

The family is grateful that, eventually, one doctor did listen. She referred Kirsten to the George Elliot Hospital near Coventry for an exploratory laparoscopy. Unfortunately, the waiting list was 24 months long.  

The wait began but every month was a struggle for Kirsten. Soon, Nicola knew she had to step in.  

She’d noticed that her daughter was losing too much weight. In fact, Kirsten’s BMI had reached 16.9, which is classified as ‘underweight’.  

Nicola was working for TFP GCRM Fertility in Glasgow as a nurse, and she knew her expert colleagues would be able to help her daughter.  

A GCRM consultant, a specialist in women’s reproductive health, reviewed Kirsten’s notes and asked her to travel to Glasgow the following day for an emergency appointment. 

“I was terrified and exhausted,” remembers Kirsten. “But I also felt lucky because someone was finally listening to me.

The consultant scanned me, found that my ovaries were smaller than average and carrying cysts, and confirmed that I had endometriosis." 

The GCRM team also tested Kirsten’s AMH levels, to assess her egg count. Her score, which should have been between 13 and 53, was 5. 

"I'm so lucky to have my Mum at the clinic."

Thanks to the intervention of the TFP Fertility consultant, Kirsten’s laparoscopy was moved up the NHS hospital’s waiting list. It took place a few weeks later.  

During the procedure, a cyst on Kirsten’s left ovary was drained and her endometrial tissue was reduced through the application of heat, a process known as diathermy. 

Endometrial tissue had been found both in and outside of Kirsten’s uterus – on a kidney, her urethra and bladder as well as on both ovaries. There were also deep endometrial nodules on her bowel which could not be treated. 

By this time, Kirsten was 23 and Elliot was 27. 

The couple knew that if they were serious about having a family, they needed to start trying now.   

With her low AMH levels, damaged ovaries and scarred uterus, and with more endometrial tissue likely to grow, this was a race against time.  

NHS funding for IVF wasn’t available for Kirsten and Elliot as their chances of conception were considered low. So, the couple decided to ‘get the ball rolling’ with private IVF via TFP Fertility GCRM. 

“The team there were so helpful and supportive,” says Kirsten. “And, of course, my mum is there.” 

At this point, they changed their diets significantly. Kirsten researched what foods were best for fertility, and the couple began including fruit and vegetable smoothies, nuts and seeds into their daily routine.  

They stayed away from processed foods and sugary drinks and incorporated oily fish such as salmon, tuna and mackerel. 

As pomegranate and cranberry juice can be beneficial to the lining of the uterus, Kirsten drank this daily. 

She knew that avoiding stress and getting enough rest would be crucial to her chances of a pregnancy. 

“I had so, so much rest,” she recalls. 

"I needed extra injections to mature my eggs."

As this was to be ‘long distance’ IVF, the medication was posted from Glasgow to the couple’s home in Coventry. 

Scans and health checks would take place at TFP Oxford Fertility and Kirsten and Elliot would then return to Glasgow for the egg collection and transfer procedures.  

Meanwhile, the TFP Fertility team provided video links on how to handle the medication and how to inject correctly. 

“I was lucky, as my mum would FaceTime me and tell me what to do,” remembers Kirsten.  

“I was nervous of the first injection – the one that kick starts everything – as I didn’t want to do it wrong and damage our chances with the IVF. 

“Once I started doing it, it was OK. I’m quite resilient with things like this. I knew this would potentially give me a baby, so I just got on with it,” she adds.  

It was time to visit Glasgow for the egg retrieval procedure – but there was a problem. 

“Just before we headed to Scotland, we had tests in Oxford to see how my follicles were growing,” says Kirsten. “It was clear that my body wasn’t ready for the egg collection.” 

The couple headed north, knowing that the course of medication would be extended and wondering how long they would be in their Scottish bed and breakfast. 

“We were there for eight days,” recalls Elliot. “It was nice, but it was also stressful. I’d just started a new job and we had to handle this along with the extra injections and clinic appointments.” 

Kirsten says, “By now, the scans showed that my ovaries were huge. I was nervous about the procedure ahead and scared about how many eggs would be collected.” 

She remembers how reassuring her mum and the GCRM team were at this point. 

“I found this so refreshing, considering the lack of help and support I’d had for so many years,” she says. 

"We were so happy to be having twins."

“The retrieval wasn’t too bad,” she adds. “I’d been used to injecting myself, so this was nothing to worry about. I tried to keep myself calm.” 

The embryologist retrieved seven eggs from Kirsten’s follicles. They were mixed with Elliot’s sperm and after five days, one grade A embryo and one grade C embryo had survived. 

The grade A embryo was transferred into Kirsten’s uterus.  

Ten days later, a pregnancy test confirmed Kirsten’s pregnancy. 

A few weeks later, a scan then revealed something else… The couple were expecting twins.  

“This wasn’t really a surprise,” admits Kirsten, “There are twins on both sides of the family.” 

Kirsten and Elliot’s girls, Xaviera and Alaia, were born prematurely at 33 weeks.  They’re now eighteen months old and thriving.  

“It is crazy looking back on how I dealt with it all mentally,” says Kirsten. “I feel I did quite well but when I look back, I must admit there are some blank moments.

“A real low was when I requested my medical notes and saw that during one A&E visit, they’d written that I was aggressive. This was simply because the doctor laughed at me and said that plenty of women have painful periods."

"Doctors must be more aware of the symptoms of endometriosis."

Kirsten’s periods still trouble her, but they don’t often interfere with daily life.  

“I can normally do stuff with the girls,” she says. “When I am run down or stressed or fatigued, that tends to trigger the symptoms of the endometriosis, and it all flares up and I’m ill. 

“The rest of it is manageable, for now.” 

Elliot reflects on how, as a couple, they help each other through life’s daily challenges.  

“Historically, women would cook,” he says. “I don’t agree with that. I always cook for Kirsten and the girls. I try and make her day easier.” 

He adds, “It wasn’t nice seeing someone ill and not being able to help. Normally there is treatment or journey you can go on. But with endometriosis, the hardest thing is that it is so often overlooked. That’s just not right.   

“We want to share our story as there are women out there (and men) who have fertility problems. If you identify things that are going wrong early enough, you can do something about it. 

“Don’t leave it too late.” 

“We’re very grateful to the doctors and nurses at TFP GCRM Fertility ,” he adds. “The team went above and beyond to help us. Thanks to them, we now have our wonderful girls.” 

“The journey I’ve been on means everything to me, because now I’m a mum to two beautiful, healthy little girls.”