Despite what the hallmark cards would have you believe, Mother’s Day isn’t always filled with glossy helium balloons and breakfast in bed.
For many women, the annual celebration can serve as a reminder of heartbreak, absent parents or ‘what could have been’ dreams. Despite fertility issues affecting 1 in 6 Australian couples, for many women it’s a topic still shrouded in stigma.
“It can be heartbreaking to watch patients who have gone for many years without a diagnosis and by the time I see them, they’re racing against the clock to get pregnant. Early diagnosis and treatment is so critical,” explains Dr Genia Rozen from leading fertility clinic Genea.
Hoping to break the stigma and help make women feel less alone this Mother’s Day, two women open up about their long road to motherhood after being diagnosed with endometriosis and Polycystic ovary syndrome (PCOS).
Letitia’s Story
Letitia Comello, now 31, grew up hearing that the painful periods she had been experiencing since she was 14 was ‘just the way it is’, but deep down she knew something wasn’t quite right.
Unfortunately, Comello’s story is an all too familiar one as more and more women speak about their journey with undiagnosed endometriosis. And as Letitia found out, it would have much more impact on her future plans than she ever would have realised.
“No matter how many people told me that the pain was just normal, that didn’t sit right with me. I know my own body,” she said. “Thinking back, there are so many things that make sense now in addition to the abdominal pain. Like not being able to sit cross legged, my IBS, the pain down the back of my leg and pain during and after intercourse (dyspareunia) – I’m not going crazy, there was a reason for all of it!”
The teacher decided to take matters into her own hands, but that didn’t mean it was a smooth road to diagnosis.
Her decision to advocate for herself over many years saw her sit in front of an army of five gynaecologists, pelvic floor physios, psychologists, psycho sexual practitioners and many GPs who couldn’t give her answers. She had resigned herself to a life of pain after being told many times to “just get on with it”.
In 2015, after a chance meeting at a cousin’s wedding, Letitia started dating Travis, now 34. By 2017 they were engaged, after he popped the question during a European getaway. “I couldn’t understand why he wouldn’t let me carry the backpack all day,” recalls Letitia.
Women are taught in school that it’s easy to fall pregnant from young but this isn’t always the case and we’re proof of that. If I’d known all of this, we would’ve started trying earlier.
Letitia
After they were married in 2021, Letitia and Travis decided it was time to start trying for a family. By August they were pregnant, however, sadly the couple experienced a devastating loss in that September. A missed miscarriage was diagnosed at eight weeks – their baby had stopped growing at five weeks.
“I was devastated. Although we hadn’t told anyone it still felt real and was a really hard time for us both.”
Letitia underwent a D&C (dilatation and curettage), but it wasn’t until later that her endometriosis would be discovered. After the couple recovered from their loss they decided to start trying again. This time it was eight months without any success and Letitia noticed her period pain was getting considerably worse.
“I did so much research, trying to get to the bottom of what was going on but I knew that it was time to see a fertility specialist so I booked an appointment.”
To ensure the couple didn’t waste any more time, Dr Rozen ordered a number of tests prior to their first appointment, including a HyCoSy (Hysterosalpingo Contrast Sonography), which was what actually enabled the diagnosis of Letitia’s endometriosis.
She also helped explain an extremely low Anti-Mullerian Hormone (AMH) test result, which measures a woman’s egg reserve, saying that endometriosis can have an impact on the results and we may need to move a bit quicker than someone with normal reserve. But at the end of the day it only takes one good egg!
“Although I was grateful for a diagnosis, I was also in a bit of shock when provided what options we had on the table. I went down a research spiral, joined Facebook groups and other forums.”
Ultimately, Letitia decided to proceed with a laparoscopy in June 2023. The 2.5 hour procedure identified severe deep infiltrating endometriosis. There was no question. 17 tissue samples were taken and 14 of those had endo. It was across multiple areas – left uterosacral ligament, pouch of Douglas, right and left pelvic side wall and bladder peritoneum.
“Mum and I are really close, she lost her Mum when she was 10 years old so knows how important Mums are in your life – she was there holding my hand for all of it. She’s told me she feels a bit responsible for me not having answers sooner but how could she have known? None of us are told about this and so many women are dismissed when they seek medical care anyway”.
Letitia’s pain subsided after her second period post-procedure and at the six week follow-up appointment they were sitting down with Dr Rozen who gave them the all clear to start trying naturally again.
Letitia and Travis cancelled their four month follow-up appointment after just three months, receiving the greatest news of all – they were pregnant again.
“We’re due May 15th so it might just be a Mother’s Day baby surprise! What we do know for sure is that little bub has a full head of dark hair just like both of us. We can’t wait to meet our beautiful bub”.
Letitia has been passionate about telling her story to ensure other women know they’re not alone. Her journey to motherhood has been a bumpy one and shows that awareness and advocacy for your own health journey is so important and can have a significant impact on the outcome.
“Women are taught in school that it’s easy to fall pregnant from young but this isn’t always the case and we’re proof of that. If I’d known all of this, we would’ve started trying earlier!”
Shannyn’s Story
After coming off the pill at the age of 19, Shannyn Werner (now 33) didn’t get a period for eight months. This should have been a sign that something wasn’t right, especially after experiencing irregular periods since she started menstruating, yet her GP at the time told her it was just her body adjusting and that she could address it later when she was looking to start a family.
“When you speak with a number of medical professionals who all dismiss it as a non-issue, you start believing it. It definitely put me off seeing a doctor to really get to the bottom of what was going on,” says Werner.
Shannyn is no stranger to healthcare either, practicing as a cardiology nurse in Richmond. It’s a story so many women have encountered and continue to experience when it comes to PCOS.
And because Shannyn didn’t display any of the other usual symptoms such as weight gain and excess facial hair, the silent medical condition was passed off as something to ignore.
Fast forward six years to 2017, at the age of 25 Shannyn was introduced to Carl through friends at their engagement party. And in 2020 they were engaged.
“It was a COVID engagement – we managed to get up to Byron for Christmas and Carl popped the question. We thought the pandemic was done and dusted so planned to marry in November 2021.”
That wasn’t to be, especially with family over in the UK and interstate but they finally married in March 2022 at a beautiful winery in Mount Macedon.
“We started talking about starting a family pretty soon after getting married as Carl was already six years older than me. We were really keen to get started.”
Shannyn had still been experiencing very irregular periods – between 7 to 12 week cycles. This time she hunted down a great women’s health focused GP who had experience in ovulation disorders.
What a difference the right doctor makes – the GP took her time to do blood tests and ultrasounds and talk about her symptoms. The Anti-Mullerian Hormone (AMH) test came back extremely high (in the 80s) so all signs were pointing to PCOS. She wasted no time getting a referral to a fertility specialist.
In September of 2022, the Preston based couple sat down with Dr Rozen to talk through their options medication was their first port of call.
“It was as if my period knew it needed to be on time for once in my life – I was prescribed Letrozole and couldn’t start until the first day of my next period, and guess what, it came that next day!”
Ultrasounds were conducted to track the follicle development, “date nights” were scheduled and then a pregnancy test two weeks later. This was the reality of life for the next eight months for Shannyn and Carl. Not as romantic as we’re led to believe!
“As each month went on, it got harder and harder to stay positive. We had already been trying for seven months before the treatment and this went on for another eight months. Friends were
announcing pregnancies and I was so torn between being happy for them and sad for us. It was a really rough time.”
Shannyn and Carl scheduled another appointment with Dr Rozen to talk about the next steps. Knowing there is more than one path to conceiving, she encouraged them to hang in there instead of moving onto IVF. What’s important given everyone is unique, she explained, is being educated on the various options available to patients.
Looking back, I wish I had pushed harder with the medical professionals to help diagnose my PCOS – at least I would have had more knowledge earlier and been able to plan things differently
Shannyn
It was the Friday before the long weekend and early that Friday morning Shannyn decided to take a home pregnancy test. They were heading away and she wanted to do a quick check before indulging in some wine during their getaway.
“I peed on the stick, put it on the sink in the bathroom and just went back to sleep and forgot about it. When I woke up and saw the two lines, I was in shock! I quickly woke Carl up and said ‘I think I’m pregnant’. Of course he had no idea what was going on, half asleep and not knowing that I actually did a test.”
Shannyn tried to be pragmatic about it and decided to take another test the next morning. Safe to say, no wine was consumed that weekend as the test returned another positive result.
The gorgeous baby Renn was finally born on 19th February 2024.
“Looking back, I wish I had pushed harder with the medical professionals to help diagnose my PCOS – at least I would have had more knowledge earlier and been able to plan things differently.”
The experience affects women like Shannyn deeply. What many people don’t consider is that it’s not just the clinical aspect. At the age where lots of friends are having babies, she started to get anxious about meeting up with friends or scrolling through social media – relationships were impacted.
Shannyn was always wondering how she would respond to hearing about pregnancy or birth announcements. After seeing a psychologist who specialised in infertility, it helped her come to terms with her feelings and gave her the tools to help better manage conversations and challenging situations.
“I’m so glad we’re out the other side but I also think it’s so important to make sure women know they’re not alone, there are other women out there who have walked this road. I would say go and see a doctor that they trust, talk about anything they may be concerned about and if they don’t get the answer they want, keep pushing for it.”
Shannyn is celebrating her first long awaited Mother’s Day this year and Carl has organised a surprise event with the couple who they met through at the engagement party back in 2017. It feels like they’ve come full circle and are exactly where they’re meant to be.
For more information or to book an appointment with a Genea specialist go to genea.com.au
