Zara’s Endometriosis & Infertility story
“I could have cried; I was so overwhelmed with emotion that I’d finally been listened to. I cannot tell you how justified that made me feel.”
After eight long years, three gynaecologists, one colorectal consultant appointment, a fertility nutritionist and a privately paid-for laparoscopy. Zara (not her real name*) was diagnosed with endometriosis.
‘I’d explained my symptoms over and over again, only to be told these were ‘normal’ period pains. I fell into a statistic that it takes around eight years to achieve an endometriosis diagnosis.’
Sadly, Zara’s endometriosis was only diagnosed after she and her partner had started trying for a baby. Describing her symptoms (severe abdominal pain, bloating, nausea and fatigue) to a fertility nutritionist after a series of devastating events, it was suggested she might have endometriosis.
‘When I was diagnosed, I almost managed to forgive my body. For so many years, I had crucified myself for being the type of person who gets painful periods, thinking I was weak or couldn’t handle it.’
Zara and her partner, now husband, started trying to conceive in 2019. Her partner had previously been diagnosed with a varicocele, but this wasn’t deemed a limiting factor for fertility.
‘After six months of trying, we decided to get a seamen analysis performed at a private clinic.’
Next step: ICSI
‘The tests showed morphology and motility issues, which meant we would need medical assistance in the form of ICSI (sperm injected into the egg) to fall pregnant.’
Armed with this information, they asked their GP to be referred for NHS-funded IVF treatment and patiently waited. The approval came quicker than expected, and they were keen to start.
During this time, Zara and her partner had been carefully planning their wedding, but then Covid hit. ‘It felt like everything was against us; not only was I ‘unlucky’ not to conceive naturally, but I was also ‘unlucky’ to have planned a wedding for 2020, which saw a global pandemic. It left me in a place of feeling rejected by life’.
In August 2021, they finally managed to tie the knot. ‘My personality is ‘Type A’, where everything has to be perfect, but by the time we got married, I was already pretty defeated. I had compromised and de-prioritised so much; it wasn’t the fairy tale I had originally planned, and I knew that after the wedding I would go straight into my first egg collection. It just felt like I was on a conveyor belt that just kept getting stuck.’
Zara had her first egg retrieval in the December of 2021. Nineteen eggs were collected, but only eight made it to blastocysts.
‘We’d planned a fresh embryo transfer, but I got ovarian hyperstimulation syndrome, which meant I wasn’t allowed to as it can be dangerous, so a frozen transfer a month later was scheduled instead.’
Her first transfer was unsuccessful, so a second was performed three months later, which resulted in a pregnancy.
A missed miscarriage
It was during a routine eight-week scan that Zara and her partner were told that their baby’s heart had stopped. Devasted, they were told to go home and that she would pass the foetus naturally.
’I’d had been told to expect to lose blood, but nothing had prepared me for the pain and vast amounts I lost. I was scared and worried, so I contacted my GP to explain and requested a scan to investigate, but I was flatly refused.’
Two days later, she sat in her local A&E Department in excruciating pain and haemorrhaging, but there was no gynaecology consultant available.
Finally, after nearly two hours of waiting, she was taken into the operating theatre to have the foetus surgically removed. ‘I was awake throughout the procedure; The pain was like nothing I have ever experienced. I was destroyed and cried my heart out.’
With only a Nurse to support and hold her hand, her partner was made to wait helplessly in another room as hospitals were still under covid restrictions.
Five months later, the couple had their third embryo transfer; however, that, too, was unsuccessful.
‘We decided to seek the help of a fertility nutritionist, as well as a well-known urologist and male factor fertility specialist, before starting our next treatment in the hope of improving our chances of becoming parents. My husband also had his’ varicocele repaired for the same reason.’
It was during the consultation with the nutritionist that the possibility of endometriosis was discussed, and the diagnosis was finally confirmed following an investigative laparoscopy. ‘The surgeon was able to remove some endometrial tissue but there was also some adenomyosis growth that couldn’t.’
Fourth time lucky
Thankfully, on their fourth attempt, Zara fell pregnant and is now six months pregnant.
‘After having multiple unsuccessful transfers and the devastation of the miscarriage, we decided to have the remaining embryos that were frozen genetically tested. (PGT-A).’
‘There are a number of factors and conditions present in both me and my husband that, individually and combined, have impacted our fertility journey. But the answers and solutions we found came from a determination to learn and better understand our bodies. Without our personal endeavours, I cannot say how long it might have taken to get solutions, which is why being an advocate for yourself is so important.’
‘I still feel the pain and sense of injustice from the treatment I received, especially during my miscarriage, but I am able to find peace in the blessing that I am carrying this miracle baby.’
*Zara’s real name is known to Freja’s.
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