‘I want a child but I’m scared to come off the pill’

If 29-year-old Marianne Barry skips a day of her contraceptive pill, she risks experiencing severe anxiety or even suicidal thoughts.

Marianne suffers from pre-menstrual dysphoric disorder (PMDD), affecting up to 8% of women, but the average diagnosis wait can take around 12 years.

While contraception is the primary treatment for PMDD, this presents a challenge for women wishing to conceive.

“I desire to have a child, but I also want to maintain my sanity,” Marianne expressed.

The Welsh government has stated its commitment to enhancing the diagnosis, treatment, and awareness of conditions that affect women, including PMDD.

A teaching assistant from Cardiff, Marianne spent eight years consulting her GP before finally seeking a private diagnosis two years ago when her symptoms intensified.

“I would wake up feeling something churning inside me,” she recalled.

“It felt like my mind was boiling over with anger, sadness, and anxiety—the anxiety was overwhelming.”

She recognized that her symptoms aligned with her menstrual cycle and began documenting them.

“I could sense it and would say, ‘Okay, I know my period is approaching.’”

Prior to receiving the contraceptive pill, Marianne’s symptoms would return monthly, leading to a constant state of anxiety.

“You almost question your reality because after feeling low, things seem to improve as you approach ovulation.”

The NHS states PMDD symptoms are “akin to PMS but much more severe with a significant negative impact on daily life.”

Symptoms may include:

• Headaches as well as joint and muscle pain
• Overeating and sleep disturbances
• Intense feelings of anxiety, anger, depression, or suicidal thoughts.

While the exact cause of PMDD remains unclear, it typically takes about 12 years to receive a diagnosis in Wales.

Dr. Llinos Roberts, a GP, attributes the lengthy diagnosis time to insufficient research.

“The limited treatment options reflect the historical lack of research into women’s health issues,” Dr. Roberts stated.

“Current options include contraception to mitigate PMDD symptoms, alongside treatments for the symptoms themselves like CBT and antidepressants.”

For Marianne, the prospect of discontinuing her medication to conceive while facing the potential resurgence of her symptoms is daunting.

“There’s no guarantee of getting pregnant, and it’s unknown how long that might take. I want to have a child, but I also want to stay sane,” she remarked.

“I’m too afraid to stop taking my pill now.”

Corinne Sinclair, 30, from Cardiff was diagnosed with PMDD two months ago and is actively trying to conceive.

Her only treatment option is antidepressants, but she has been warned that if she becomes pregnant, she’ll need to consider stopping them.

“I believe more research on PMDD is essential to provide women with options beyond just contraceptive pills,” Corinne stated.

“It’s somewhat of a cop-out—they tend to simplify many women’s health issues.”

Corinne also suffers from endometriosis, complicating the process of conceiving a child.

She expressed that the anxiety over her PMDD symptoms, which include dark thoughts and challenges in motivating herself, adds significant stress.

“This journey to parenthood is expected to be joyful, and though I’m hopeful, I can’t shake the worries,” she emphasized.

“Post-baby, will I struggle with my mental health? What if I experience severe mental distress during pregnancy?”

Dr. Roberts noted that diagnosing PMDD can be challenging, as it’s frequently mistaken for depression or anxiety.

She advises women suspecting they have PMDD to keep a detailed record of their symptoms to present to their GP.

She emphasized that there isn’t a quick fix for women with PMDD who wish to conceive.

“This dilemma can be especially taxing for women eager to conceive while knowing that stopping contraception might intensify PMDD symptoms,” she explained.

“For those with significant PMDD, it’s a balancing act between the risks and benefits of stopping contraception.”

The Welsh government has asserted that its Women’s Health Plan aims to enhance the identification, treatment, and awareness surrounding conditions impacting women.

“PMDD is recognized as part of the menstrual health focus within the plan,” a government representative stated.

“A budget of £3 million has been allocated to implement the plan’s actions.”

Additional reporting by Dani Thomas.