Sunday, 23 January 2011

Can't stand the pill? A brief introduction to progesterone intolerance

Depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing... If the pill drives you crazy, you're not crazy: you're probably progesterone-intolerant. This isn't rare: 1 in 5 of women are progesterone intolerant.1 Nor is this "moodiness" or "negative affect". It can destroy relationships, cripple academic performance, damage careers, and turn otherwise mentally healthy women suicidal. It can be misdiagnosed as chronic depression and bipolar disorder2, leading to years of inappropriate treatment. It shouldn't be news, either: this kind of bad reaction to the pill has been known about for at least forty years.

It's incredibly common, it's well-established, and it destroys lives. And it's completely unnecessary. All you have to do is stop taking the pill, or get your Mirena coil taken out, and return to your joyful, human, recognisable self. In the inaugural post for endowriter, I said I expected it to be common - but I didn't expect it to be so common, or the information to have been available for so long, and when I found that out, I wept. Because, as I also said in the first post, I wreaked havoc on my life and nearly committed suicide; the damage that I listed above is my own experience as well as cited sources; and it was all unnecessary. So here's the basics.

progesterone and progestogens
Progesterone is natural; progestogens are artificial.  Progestogens are in the combined pill (along with oestrogen), the mini-pill (progestogen only), the Mirena coil, the hormone implant, the contraceptive injection, and some HRT. The intolerance, however, seems to be the same:
Cullberg (1972) showed that women who had previously suffered from PMS reacted badly when taking oral contraceptives. This suggests that women with PMS are more sensitive to hormonal provocation than women without.1 
In other words, if you react badly to your own progesterone, you'll react just as badly (or worse) to the artificial kind. If you get bad PMS, the pill will be worse.

PMS and progesterone-intolerance
PMS is actually a form of progesterone-intolerance. Progesterone is released in the second half of your cycle, from when you ovulate to your period. (This is the luteal phase, usually 10-13 days long. It varies from woman to woman, but is very consistent for each woman.) Contrary to popular belief, it's not caused by your approaching period - it's caused by the progesterone released after you ovulate. That's also why symptoms ease within a day or two of your period starting. The symptoms for PMS and progesterone-intolerance are the same:
This hormone can produce depression, tiredness, loss of libido, irritability, breast discomfort, and in fact all the symptoms of PMS, particularly in women with a history of PMS.4 
The symptoms are often described in articles as "negative moods" or "negative affect". As mentioned at the beginning, this doesn't begin to describe the emotional and mental hell that women go through, never mind the severe repercussions on their lives.

Symptoms of progesterone-intolerance
The symptoms of PMS (which are also the symptoms of progesterone intolerance) are described by the American Psychiatric Association as follows.5  The first four symptoms are the strongest indicators.

1. Markedly depressed mood, feelings of hopelessness, or self-deprecating thoughts
2. Marked anxiety, tension, feelings of being ‘keyed up,’ or ‘on edge’
3. Marked affective lability (e.g. feeling suddenly sad or tearful or increased sensitivity to rejection)
4. Persistent and marked anger or irritability or increased interpersonal conflicts
5. Decreased interest in usual activities (e.g. work, school, friends, hobbies)
6. Subjective sense of difficulty in concentrating
7. Lethargy, easy fatigability or marked lack of energy
8. Marked change in appetite, overeating or specific food cravings
9. Hypersomnia or insomnia
10. A subjective sense of being overwhelmed or out of control
11. Other physical symptoms, such as breast tenderness or swelling, headaches, joint or muscle pain, a sensation of bloating, weight gain. 
That's a terrifying list, but it's also a highly medicalised list. It's an accurate list of symptoms, yet it doesn't give any idea what progesterone intolerance is actually like. I believe it's useful for medical professionals to understand the severity, so that side-effects are not dismissed; I believe that it's helpful for women to read experiences that reflect their own; and I believe that my writing can explain what it's like. Over the next few posts, then, I will write about the worst symptoms in turn, from my own experience: paranoia and panic attacks; loss of enjoyment; depression and weeping fits. For now, the best I can describe the worst of it is as - bereft.


My words aren’t spells, my virtue is no guard.
The music’s lies and hopes die at their birth.
The truth is barren; fantasies are ash.
Through hours like this, I age and trudge the earth.

I put my lips to sweetness, but it’s gone.
I put my lips to wine, but what’s the point.
I put the wine away, the kettle on
And put away the pain no hopes anoint.

I sleep so I can wake for work, I wake –
I work so I can live, and so I live.
I live, but if I feel it’s just an ache,
And even dreams have nothing more to give.

The music still has meaning, but it’s gone
To worlds where we might meet, and you might care.
And I’m too wise to say I can’t go on
While I can sleep and work, though nothing’s there.
— Megan Kerr

1 Panay, Nicolas and Studd, John. (1997) "Progestogen intolerance and compliance with hormone replacement therapy in menopausal women" in Human Reproduction Update, Vol. 3, No. 2 pp.159–171.
2 Studd, John (2010) (DSc, MD, FRCOG)
3 Cullberg, J. (1972) "Mood changes and menstrual symptoms with different gestagen/estrogen combinations. A double blind comparison with placebo" in Acta Psychiatr. Scand. Suppl., 236, 1–46.
4 Studd, John (2005) "Women, hormones, and depression" in The Management of the Menopause (3rd edition) Studd, John (ed.) New York, London: The Parthenon Publishing Group. (146-161)
5 Diagnostic and Statistical Manual of Mental Disorders, 4th ed. Washington: American Psychiatric Association, 1994.

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