I now have two diagnoses that many people like to write off as medicalizing normal human functioning: ADHD and PMDD.
I invite those poor deluded people to walk a mile in my shoes. I’ve previously discussed how debilitating ADHD can be, so today, it’s all about PMDD, premenstrual dysphoric disorder (with the excessive length and defensive tone brought to you by the letter D for Dysphoria…)
Most* of what the Internet has to say about PMDD is either useless and/or underinformed, or 2) contentious opinions with no real empirical basis (which fill me with rage) from people with zero exposure to what PMDD means in real life.
Let me set the record straight(er): PMDD is not stigmatizing or simply medicalizing a normal female experience, because this ain’t your mama’s PMS. Technically, with estimated 30%-80% heritability, it’s my mama’s “PMS”, which struck fear into our little hearts as children (none of us knew that was why she went bonkers on a regular basis, of course).
In fact, calling PMDD a “severe” form of PMS is beyond insulting – the fact that the symptom lists are the same is incredibly misleading and is likely the root of much of the irresponsibly ignorant opining in the media. The general public simply doesn’t understand what “severe” means in medical terms. As the amazing Ruby very aptly put it, it’s like saying that disembowelment is a “severe” stomachache. I do not jest when I say that it can be life-threatening.
Calling PMDD a ‘severe’ form of PMS is beyond insulting… It’s like saying that disembowelment is a ‘severe’ stomachache.
There isn’t yet much research on PMDD, but what they do know is that it’s not caused by anything to do with abnormal hormone levels, like you would see in PCOS. There’s evidence of low levels of serotonin precursors – the chemicals your body turns into serotonin – and in addition to the serotonin hypothesis, the general belief is that PMDD is caused by an abnormally oversensitive physiological reaction to “normal” hormonal variation.
So I’m just being oversensitive, you might say, as though I have a choice in it. But I’m really not that stupid, folks.
I don’t like…
- Pain that forces me into a whimpering heap
- Suicidal thoughts – they scare the shit out of me
- Lashing out at my poor husband with irrational temper tantrums at the least provocation
- Losing hours at at time over some triviality that sets me off
- Being so spaced out that I can’t talk coherently, read effectively, or follow the plot on a TV show
- Spending days crying
- Putting 90% of my energy into maintaining my composure because I can’t stay home from work all the time for a week or two every month
- Losing a quarter of my life to cognitive dysfunction and emotional lability
I only wish I were making this up, but there’s actually more that I’m not going into. A hell of a lot more. I have all 11 symptoms in a bad way. And me, I hit the jackpot! I’m genetically incompatible with the treatments shown to be most effective.
- First-line treatment is SSRIs, contraindicated by CYP2D6 ultrarapid metabolizer status, plus other (5-HT) genes: severe side effects extremely likely and sexual dysfunction guaranteed. With the right allele combination, SSRIs are poison.
- Physical symptoms are treated with NSAIDs like ibuprofen, naproxen, and aspirin. For CYP2C9 poor metabolizers like me, NSAIDs are not only less effective, there’s also greater risk of gastric damage.
- One oral contraceptive has been FDA approved to treat PMDD; apparently the drospirenone in Yaz is a meaningfully different progestin. My endocrinologist says that because hormone levels are not causal, oral contraceptives won’t help. On the cognitive-emotional end, so far I have to agree, though it does help physical symptoms and that’s very welcome.
- Doctors (five so far) are unwilling to give me real painkillers because – as far as I can tell – I don’t whine convincingly or loudly enough. It’s been brushed off so many times that I expect no help from anyone when it comes to managing pain. SIX THOUSAND mg daily of naproxen only takes the edge off the cramps. That’s cruel and unusual punishment for simply existing.
- Supplements and vitamins have been shown to help – PMDD is one of the few conditions where natural/alternative treatments have been studied more than pharmacological ones. I’m taking all the vitamins already, but homeopathy is mostly ineffective for me with the exception of Indica for pain relief.
- Moving to a holier-than-thou lifestyle health-wise generally helps – with the same recommendations as for every other mental condition – sleep hygiene, uber-healthy eating, exercise, weight loss. I’ve done all of that and seen no observable improvement to PMDD symptoms, although my general health is much improved.
This adds up to a pessimistic prognosis – to date, the best treatments either don’t work, cause intolerable damage, make only tiny improvements, or are just plain denied. As far as I can tell, I’m stuck with another 20-30 years of chronic part-time hell. I’ll have to endure rapid-cycling bipolar symptoms without any real hope of remission until menopause, which will itself make things even worse until that special time is over.
So let’s do some math.
12 months x 20 years = minimum 240 dysphoric episodes before my damn ovaries give out. If I’m lucky enough to hit menopause at 55, that is. Average episode duration ~ 8 days; 240 x 8 = 1840 days = 5+ years of guaranteed suffering, on top of the usual ration we all receive, menopause, and the sentence already served. That’s what I get to look forward to.
So go ahead, invalidate me and tell me you “don’t believe in” PMDD. Tell me that you believe suicidal ideation is a normal part of the female menstrual experience – everyone you know is doing it, right? Tell me that every woman has cramps so bad she can’t stand up, and that OTC painkillers are an adequate solution. Tell me that you think it’s OK to be simply incapable of functioning adequately a quarter of the time, and for doctors to just shrug and look away as if there’s nothing they can do.
What, you don’t think that’s normal or acceptable? Funny, neither do I. And I’m not alone.
*Candida Abrahamson’s blog has the best discussion on PMDD I have yet found on the whole entire Internet (as usual!)
**For my pre-menopausal comrades, if you’re adequately comfortable with your body, a menstrual cup is far more hygienic AND ecologically responsible AND economical AND comfortable AND convenient than traditional sop-up methods of dealing with flow. It takes a cycle to get accustomed, but seriously, I will never, ever go back!