Nicole’s story
“When I saw the gynaecologist again for follow-up she said: I’ve done my job. Why hasn’t your body done its job? That was probably the lowest point I’ve ever had in my life”.”
Nicole began using contraception at a young age. When she stopped taking the pill to start a family with her boyfriend, she faced painful periods and struggled to conceive. These challenges led to three diagnoses- PCOS, endometriosis and adenomyosis.
“There was a lot of shame. I shamed myself so much”
Nicole came off the contraceptive pill in her mid-20s, hoping to start a family. Instead, she was confronted with severe symptoms, including infertility, acne and dark marks around her neck. After a diagnosis of PCOS and primary infertility, a long process of awaiting referrals for assisted conception followed. “Even though I had answers in the sense of a diagnosis, there were many other questions left unanswered,” she recalls. “A lot of stuff I self-taught. Nobody ever actually spoke to me about what infertility was, or how I could support my fertility”.
“I was just told PCOS affects your fertility. Lose weight and you should be fine. It was never explained to me how PCOS impacts your body weight”
“…I was struggling with my weight anyway, and now I had someone else medically contributing to the shame I felt, but not giving me the tools to do anything about it.”
“I felt rubbish. I felt let down. There was a lot of shame. I shamed myself so much”
When it feels like your words just aren’t enough
When she first came off the pill, the true impact of Nicole’s cycles was revealed- heavy bleeding, blood clots, and painful ovulation.
“I went to the GP so many times. I went to female GPs because it was period related but my diagnosis came because of a male GP.
It was a lot of ‘it’s normal, it’s part of being a woman!”
“When you live that for decades, you learn to push through it. So probably a lot of the time it came across as not severe enough because I was maintaining a life. But I had no choice, I had to earn, I had to study.”
“I felt like I was trying to convince them to believe me. Like I was putting in a lot of effort to be believed but with no results”
Even attending specialist appointments was a big source of anxiety due to fear of not being believed. “Sometimes I just felt like my words were not enough”.
Secondary infertility…what’s that?
2 years after coming off the pill, still waiting to see a fertility specialist, Nicole became pregnant with her first child.
A few years later, when Nicole and her partner decided they wanted to try again for another child she struggled with infertility again. 2 years into trying for a second child, her symptoms had evolved. “I was experiencing bloating and painful bowel movements”. “I also developed gastritis and lost a lot of weight due to vomiting from overuse of NSAIDs (Nonsteroidal anti-inflammatory drugs)”.
A year later, she was diagnosed with adenomyosis and endometriosis and underwent laparoscopic surgery. This was the first time she heard of ‘secondary infertility’.
“I was told that I would be pregnant within 3 months. When I saw the gynaecologist again for follow-up she said: I’ve done my job. Why hasn’t your body done its job? That was probably the lowest point I’ve ever had in my life”.
At a crossroad
Nicole was later seen by an endometriosis and fertility specialist, who set realistic but heartbreaking expectations. Unfortunately, it was extremely challenging to navigate secondary infertility, and unfortunately, there was not much help available on the NHS.
“People would say I should be grateful because I had a daughter already. Of course I’m grateful. But I’m allowed to want to extend my family”.
“At this point, my periods were getting worse. I desperately wanted another operation to help my symptoms but I was told that the scar tissue from surgery could impact my fertility”
It was during a transvaginal ultrasound examination that she first considered a hysterectomy. “I was at a standstill. She couldn’t operate on me because of the potential impact on my fertility. But I also couldn’t get any more treatment for secondary infertility. I had to call my mum, and she told me to just wait and think about it”.
Two weeks later, Nicole ovulated and got pregnant but miscarried. She was desperate for other options and even looked abroad. Four weeks after her miscarriage, and 7 years of secondary infertility, she became pregnant with her son.
A pandemic pregnancy
“Pregnancy gives you aches and pains but with adhesions, it makes it 1000 times worse”. Nicole’s second pregnancy was in the thick of the COVID-19 pandemic. She was hyperalert and hyperaware, with a lot of traumas to process. She had her booking appointment over the phone and wasn’t seen by a midwife until her second trimester. She was diagnosed with gestational diabetes, for which PCOS is a risk factor.
“I remember having the facemask on and feeling like I couldn’t breathe- fear that they would tell me there’s no heartbeat”.
Due to the complications of her gestational diabetes, Nicole had a planned caesarean section, and her partner was able to attend.
What do you do when you have 3 conditions that are similar, yet so different?
Nicole’s journey with PCOS, endometriosis and adenomyosis has taught her the complexities of living alongside her conditions.
“My experience has been dependent on where I’ve been in my life. They all impact each other, but they have their separate issues”.
“I live with these conditions; I have to learn to live alongside them”.
Nicole is co-founder of “Sunday Sip” which brings chronic disease warriors together in supportive spaces. She also has an advocacy page on Instagram @_endo.of.an.era. This page focuses on PCOS, adenomyosis, endometriosis and infertility.
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