The first time Mariam*, 29, was prescribed the oral contraceptive pill at 16, it was for her painful and heavy periods. While the pill helped (she didn’t have her period and the pain subsided), the impact on her mental health was overwhelming – she started suffering with anxiety attacks which continued for three months. Despite going on to try various other pills, the anxiety wouldn’t abate. In the end, she decided she preferred heavy, painful periods to the pill’s negative side effects on her mental health.
“This experience frightened me off going on the pill again — or taking any form of birth control,” she tells R29.
The pill is a form of hormonal oral contraception that comes in two main forms – progesterone-only and combination (progesterone and oestrogen) – which use synthetic versions of hormones to suppress your menstrual cycle and prevent pregnancy. The course of pills can be taken either over 21 days (with a seven-day break for bleeding) or constantly over a 28-day cycle. There is a range of different brands, which use different quantities of synthetic hormones.
It is most commonly prescribed, unsurprisingly, for contraceptive purposes. But by suppressing a natural period you also lessen the other impacts of hormonal fluctuations. This means the pill can theoretically be used for everything from hormonal acne to dysmenorrhea (painful periods) and more serious, chronic conditions like PCOS (polycystic ovary syndrome, a metabolic condition that affects how the ovaries work), endometriosis (whereby tissue similar to the lining of the womb starts to grow in other places) and PMDD (premenstrual dysphoric disorder, a very severe form of premenstrual syndrome (PMS)).
The logic of its prescription is that it can help manage these conditions by stabilising some of the most common symptoms. However, like Mariam, many women and people with uteruses find that the benefits of managing the physical symptoms are often outweighed by the side effects of hormonal contraception – most significantly, its impact on mental health.
Mariam was finally diagnosed with late stage deep infiltrating endometriosis at 29, when a flare rendered her unable to walk for months. The diagnosis was a form of relief but the course of treatment she was recommended brought the pill back into play, forcing her once again to make a choice.
Her first treatment was excision surgery; afterwards the specialist wanted to put her on a progesterone-only pill. “There was no talk of the side effects, not even when I brought up my history,” she says. “I tried the pill again and it worsened my generalised anxiety disorder and I immediately felt the symptoms of depression – just as I had when I was 16. I took myself off it straightaway.” Although the surgery fixed some of the most difficult problems (like being unable to walk), Mariam now feels her period pain all the time. This is preferable to risking worsening mental health by going back to any form of the pill.
The pill is suggested to treat conditions like Mariam’s because endometriosis responds to the natural oestrogen and progesterone fluctuations in a menstrual cycle. The theory is that if you suppress the menstrual cycle you will also suppress endometriosis. However, as Dr Denis Tsepov, consultant gynaecologist, laparoscopic and robotic surgeon, and clinical lead at The Harley Street Endometriosis Centre tells R29: “In reality, it doesn’t always work [because] endometriosis tissue is similar to a ‘normal’ menstrual tissue (endometrium) but it is not quite identical to it.” Endometriosis tissue doesn’t always respond to the suppressive effect of progesterone in the same way as ‘normal’ menstrual tissue. “And it is a suppressive effect of progesterone we rely on while trying to suppress endometriosis progression with a contraceptive pill.”
The success of the pill’s usage in this context is far from guaranteed. It may (although it won’t always) alleviate other symptoms, particularly the pain of periods, but it doesn’t deal directly with the problem and can even mask the growth of endometrial tissue. In the meantime it can make the patient feel considerably worse psychologically, as it did for Mariam.
This is also true when the pill is prescribed for PCOS. Many of the symptoms common to the condition (irregular periods, cystic acne and excessive hair growth or hirsutism) have been shown to be alleviated with the combined pill.
These symptoms can be distressing to the individual but they affect each person to varying degrees. Despite that, the pill is sometimes prescribed because of the PCOS diagnosis itself, not because of the impact of symptoms on the individual, even though the medication does not deal directly with PCOS. In doing so it introduces potential psychological side effects.
Sabeen*, 26, was prescribed a combined pill, Dianette, in her second year of university. She says the reason her doctor gave for the prescription was that “everyone (who menstruates) needs to have at least four periods per year and at the time I was probably having two or three. I think she gave me Dianette just because I have PCOS rather than to alleviate any specific symptoms.” While the pill helped with Sabeen’s hirsutism, acne and irregular periods, it also sent her on a depressive spiral. “On Dianette, I never really felt anything but could not stop crying. The first thing I would do when I woke up in the morning was cry and every night I cried myself to sleep. Colleagues got used to me crying at my desk and stopped asking me what was wrong.”
When she asked her doctor about a potential link, it was dismissed. “She said there is no hard evidence for a link between the two because the only research that had been done in this area didn’t use a big enough sample size.” Her doctor encouraged her to keep taking it but Sabeen stopped anyway. “About two days later I felt like my life had completely changed.”
More research has been done since Sabeen stopped taking the pill, with various findings. Several smaller studies found that birth control pill users are not more likely to report symptoms of depression; one found some improvement in nervousness and mood swings. In 2016 a study was published that looked at the medical records of more than 1 million Danish women, finding a clear link between hormonal contraception and a depression diagnosis. Women taking the combined oral contraceptive pill were 23% more likely to be diagnosed with depression, while those using progestin-only pills were 34% more likely. And one of those studies that didn’t find an increase in symptoms of depression more broadly did identify that those taking hormonal contraception for non-contraceptive reasons were more likely to be depressed.
These findings are preliminary and far more research is needed into the connection between oral contraception and mental health. There is no current consensus. But the fact remains that hormonal contraception does have an effect on the brain, says Dr Sarah E. Hill, a professor of social psychology at the Texas Christian University in Fort Worth and author of How The Pill Changes Everything: Your Brain On Birth Control.
“[The contraceptive pill] has a wide range of effects on our brains,” she tells R29. “Every major structure of the brain has receptors for both oestrogen and progesterone so the hormones influence everything from sexual desire to the nature of our stress response to our sleep to our ability to learn and remember things.”
She says this impact is found particularly in younger women and people who menstruate. “There’s pretty substantial evidence showing links between hormonal contraceptive use and a greater risk of developing anxiety and depression,” Sarah says. “This is particularly true for 15 to 19-year-old women, who seem to be asymmetrically negatively impacted by the mood-related side effects of hormonal birth control.” She points to evidence showing that those who use hormonal birth control during adolescence are at a greater risk of developing major depressive disorder throughout the course of their lifetime, suggesting that hormonal contraceptive use when your brain is still developing (up to your early 20s) could have long-lasting consequences beyond the point you stop taking the pill. (A study with a larger sample size published the year before found no similar correlation between an increase in depressive disorders in adolescents and oral contraceptive use. This once again emphasises the need for more research.)
Everyone spoken to for this story was recommended the pill in their teens and early 20s, with the mental health impact rarely, if ever, brought up at the point of prescription.
When Robin, who is now 28, was 19 he was prescribed the pill for periods that were so heavy and painful he was “incapacitated for at least two days and at one point had to be given morphine for the pain.” The potential impact on his mental health wasn’t mentioned but by the third day of taking the pill he was feeling explicitly suicidal and seriously thought about crashing his car into a wall when driving down a country road. He’d never experienced this before. “The suicidality felt like it was coming from outside of me, as though someone had come and put those thoughts and feelings in my brain without me knowing, but they were very powerful.” Before he reached the wall he remembered an article he’d read online a year prior about the pill making people suicidal. “I had a lightbulb moment where I realised that was what was happening to me. I obviously didn’t hit the wall and stopped the pill the next day. After a couple of days my emotions were back to normal and I was no longer suicidal at all.”
Alice BW was similarly prescribed the pill at 13 for heavy and painful periods: “I didn’t realise there were any other options at that point, it was presented as a fait accompli really.” She was told about “minor mood swings” but remembers the GP saying that “this wouldn’t be out of the ordinary because I was a teenager, which went down like a lead balloon.” Like Mariam, she had undiagnosed endometriosis and the pills didn’t really help the physical symptoms, while only exacerbating mood swings. “I had undiagnosed major depressive disorder, now diagnosed along with an anxiety disorder, and there was nothing mild about the mood swings I’d get. I really felt like I was losing my mind and I was so ashamed of it. Ultimately I decided I’d rather try and deal with the physical pain because the pill was causing such erratic, uncontrollable behaviour.” Like Sabeen, she’d been advised to stick with it but went against the advice. “When I stopped, there was a noticeable improvement.”
It’s worth emphasising that these links between the use of oral hormonal contraception and mood disorders should not be used to dismiss the pill entirely. It is a crucial advance in empowering women and people with uteruses to have control over their bodies and lives, and the negative impacts are not felt by everyone who takes the pill, whether for contraceptive or non-contraceptive reasons.
However, the way the pill is prescribed exposes fundamental gaps in how hormonal treatment is used and how endocrine disorders are treated. As 29-year-old Alice S, who has PMDD and endometriosis, puts it: “The pill has always been prescribed to me as a catch-all for hormonal dysfunction and gynae issues.” We still know so little about conditions like PCOS, endometriosis and PMDD. We do not know what causes them and there is no definitive treatment for any of them. PCOS is very common but is chronically underdiagnosed; PMDD is often misdiagnosed as bipolar; and it can take between seven and nine years for an endometriosis diagnosis.
The pain and struggle to get these conditions taken seriously for white, able-bodied, cis women is only compounded for other marginalisations. As Robin puts it: “The pain and misery endocrine disorders can cause is often minimised and people accessing care are treated as hysterical women exaggerating pain or discomfort, often regardless of whether they’re women, non-binary people or trans men.” This is only exacerbated by factors like systemic racism and ableism. With all these knowledge gaps, the oral contraceptive pill is often the easiest if not the only form of treatment that can be offered by both GPs and specialists.
The need for more research into the potential negative effects of the pill on mental health is significant particularly when it is prescribed for non-contraceptive reasons. PCOS is associated with an increased risk of diagnosis of depression, anxiety, bipolar disorder and obsessive compulsive disorder (OCD) as well as worse symptoms of depression, anxiety, OCD and somatisation. There is a high comorbidity link between endometriosis and psychiatric disorders particularly around depression, anxiety and ADHD. And though PMDD can be observed without comorbid psychiatric disorders, comorbid conditions are reported in 70% of cases. Treatment for these conditions should – but often doesn’t – factor in psychological impact. Instead we’re left wondering how much our treatment is making these comorbidities worse.
In our current medical system there is a false divide between physical care and psychological care. As shown here, this can force women and people with uteruses to choose between caring for one and caring for the other, with medical professionals not taking both into account at once.
Mariam has recently found a treatment that works for her anxiety and OCD but is worried, based on her history, that restarting another form of contraception (such as the coil or the ring) could impact the success she’s found with the antidepressant. “It’s so frustrating that the gynaecologists I’ve had aren’t able to really talk seriously about mental health — I feel like I can’t trust their advice if I ask about the potential effects of combining these two treatments.”
The inability to see how both these conditions and their treatments affect people wholly, not just physically, can disempower patients. Alice BW’s struggle for an endometriosis diagnosis, as well as the dismissal of the pill’s impact on her mental health, led her to distrust the system as a whole. “I kept going back because I was sure something was wrong and was completely ignored. It put me off going to the doctor for a very long time and I still struggle with trusting that I’m being listened to when I do.” Alice S echoes this: “Everyone I know with hormonal trouble has a story about how they were disempowered in one way or another at the entry point into the health system.”
Instead we must become experts in our own conditions, finding ways to manage through our own research, trial and error, and occasionally luck. Some in this piece found holistic solutions for endometriosis in following anti-inflammatory diets and exercise, while others have found success combining the coil, antidepressants and regular therapy. For those with PCOS, weight management to lessen their diabetes risk has been important, while others find that a regular routine can help alleviate the mental health impact of irregular PMS. For Robin, transitioning in his early 20s brought an end to his periods: “A very welcome side effect of transitioning.”
We need more research into the impact of the pill and more research into treatment for these conditions but what is missing right now is a medical system that doesn’t draw a line between the physical and the psychological. The impact of these conditions (and their treatment) on our mental health should be as important as the physical symptoms. But as it stands, modern healthcare offers us blanket solutions to complex problems, leaving us to fend for ourselves.
Until this changes we are left scrambling, often choosing between our mind and our body.
*Some names have been changed for privacy
Credit: Original article published here.