I'd been living with endometriosis for so long without knowing

Reah’s endometriosis diagnosis in her early 30s came as both a shock and relief. After years of the contraceptive pill masking her symptoms of the condition, like many, she only realised there was a problem when it came to trying to conceive. 

Reah and Jono's story

Reah, 33, a Drama Teacher based in Windsor, first met Jono, a Farrier in the Armed Forces when she was just 19 years old. But it wasn’t until they reconnected in 2019 that the pair realised they were meant to be. The couple married in August 2020 and started trying for a baby shortly after.  

After eight months without success, they approached the NHS for some advice. “I remember being asked about my periods quite a lot,” recalls Reah. “At the start of my period, I noticed they were quite painful, particularly for the first day or two. I had heavy bleeding as well as back ache and bloating.

“Unfortunately, as women, we’re often told it’s normal for periods to be painful, so we don’t always realise when something is wrong.” 

For most of her adult life, Reah was on the contraceptive pill, something that would mask the symptoms associated with her periods until she began trying for a family. “Because of my history, I was sent for an internal scan which revealed a cyst on my ovary. They said this was caused by endometriosis.” 

"At the back of my mind, I was hopeful that this was the start of a better journey.” 

Following her diagnosis, Reah recalls feeling a mix of emotions. “I was shocked at first, but not in a sense that I wouldn’t have believed it – hearing its name, it made total sense. It was more that I’d been living with the condition for so long without knowing. 

“And then there was the relief alongside of it. We now had an answer for why we hadn’t been able to conceive, and it felt like there was now something we could actually do about it.” 

In March 2022, Reah was sent for a laparoscopy, a surgical procedure used to diagnose and remove the presence of endometrial cysts and tissue.  

“I went into the procedure not really knowing what to expect. It was my first big surgery, and it was quite tough as my husband was finishing his training to be a Farrier at the time so when I came home I was on my own.” 

The recovery time for a laparoscopy is typically around two weeks. However, it can vary greatly for those with endometriosis as it depends on how severe the condition is – something surgeons don’t know until they do the procedure.  

“The recovery was worse than I was expecting and took longer than we’d originally thought as they found more tissue that needed removing when they were in there.  

“After the first two weeks, I still didn’t feel comfortable enough to drive and my commute at the time was almost an hour. As a Drama Teacher, I’m on my feet for most of the day and I just didn’t feel ready.” 

"It can feel quite frustrating knowing that your fate is in someone else’s hands, but you have to trust the process.” 

After the procedure, Reah and Jono were offered NHS funding for one cycle of IVF. “It took almost a year for all of the appropriate paperwork to be signed and filed but eventually we were recommended to TFP Thames Valley Fertility.” 

For many, including Reah, the wait for NHS funding can feel unbearable. “Throughout this whole process, we really had to learn how to be patient. It can feel like a constant waiting game, often chasing signatures or making sure something hasn’t been lost. 

“We found it helpful to set ourselves smaller goals throughout the process, knowing we were one step closer to the bigger picture.” 

"Looking back, it was incredibly mentally challenging but worth it in the end.” 

Reah and Jono began their treatment at TFP Thames Valley in May 2023. During her egg collection, it became clear that Reah had responded well to the hormone medication used to stimulate egg growth. She had 40 eggs retrieved, 35 of which were mature.  

The specialists at TFP Thames Valley were concerned that Reah was on the cusp of having ovarian hyperstimulation syndrome (OHSS), a rare complication in IVF that occurs when the ovaries respond excessively to the medications used. Commonly, symptoms include abdominal swelling and discomfort due to enlarged ovaries.  

“I remember we went for a walk shortly before my collection and we had to stop as it felt like I was carrying a bowling ball around in my uterus.” 

To allow her body some time to recover, it was recommended that Reah have a frozen embryo transfer. 16 eggs had been fertilised with Jono’s sperm, four of these developed over a five-day period into healthy embryos which were then frozen and safely stored.  

“It was disappointing knowing we had another wait on our hands, but we decided to make the most of what was potentially our last summer just the two of us,” says Reah.  

“We understood that this was the best thing for us and giving me some time to recover would mean it was more likely to work when we had the transfer so that put my mind at ease.” 

"I took the test without Jono so I knew I’d be in trouble!” 

Three months later, Reah and Jono were ready for their embryo transfer. A single grade A embryo was thawed and transferred to Reah which resulted in the birth of baby boy, Toby in April 2024.  

“I was very weak; I tested on day three and it was negative, so I took another one on day seven which was positive. It was my first ever positive pregnancy test and I just couldn’t believe it!”  

Throughout her pregnancy, Reah had some respite from her endometriosis symptoms. But within 12-weeks of having Toby, she was back on the contraceptive pill to help manage the pain associated with her period.  

“When you’re first diagnosed, you think ‘right, I’ll have the surgery, I’ll get pregnant and then it’s all sorted’. You don’t really think about what comes afterwards. 

“As soon as we were referred to TFP Thames Valley, our journey was so smooth.” 

With three embryos frozen, Reah and Jono are unsure as to whether they’ll try for a sibling for Toby. “It’s a lot to put ourselves through, both physically and emotionally, with the uncertainty of not knowing whether it’ll work.” 

However, Reah acknowledges that they would be in safe hands if they did decide to try again. “We knew we could always pick up the phone or drop them a message via the portal and someone would be there to ease our concerns.”  

“It was a weight off our shoulders being surrounded by people who could guide us and hold our hands along the way. It wasn’t just the practical aspects that set them apart, but the emotional understanding too.”