It’s 3am, I’m wide awake, and feeling guilty about it

This morning, I woke up tired. I know, big surprise for someone living with a chronic condition. Whether it’s painsomnia, stress-induced insomnia, or regular old insomnia, it’s all too common.

I take a prescription sleep aid every night. I’ve stayed away from more effective but more addictive sleeping pills and currently take a low dose of tricyclic. I also take several supplements. I have found that melatonin, 5-HTP, and l-theanine are effective combo. However, I still get those nights where I wake up every couple of hours or can’t get back to sleep. Sometimes I give up in frustration and take an over-the-counter sleep aid as well. Other nights, like last night, I feel guilty about taking anything extra and just trying to get back to sleep.
Now I’m exhausted. Or maybe I should say extra exhausted since I feel fatigued most of the time. I’m wondering, what is that guilt about?

I always feel like I should take the least amount of anything that I need. I worry about what everything I already do take is doing to my body. I feel like I need to justify all of my prescriptions. I wonder if I failed somehow because meditating and yoga don’t make me sleep.

But, I have a bonafide diagnosis for a debilitating condition. According to my sleep study, I come out of deep sleep into light sleep 14 times an hour. If I need to take extra supplements in the middle of the night then so be it, right?

I think this comes down to a sort of internalized stigma about being sick. The assumption is that you must have done something wrong to get sick in the first place. Or if you do the right thing you’ll get better. Or maybe it’s the assumption that if you try harder, or get tougher, you’ll get over it. Acceptance of my condition has come in stages. Recognizing my own internalized ableism is another stage. I think it’s good that I want to take the least amount of medication possible, and try to see where supplements can work instead of prescriptions. But that attitude is only ‘good’ to the extent it helps me manage my condition, not when it becomes a means of self–criticism for being sick. I already have enough fatigue without adding extra sleepless nights because I wouldn’t let myself accept that I need help to sleep.

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November 2021

I shudder when I remember that summer. I was so frustrated with my body. I couldn’t understand what was happening. Newly engaged, and we couldn’t be intimate. Every time we tried, it ended in tears. My partner tried to be strong for us, to be positive, but I wanted him to be vulnerable, to show me he hurt too. I tried crazy things, like inserting yogurt and even garlic in an attempt to get rid of what I guessed might be a horrible yeast infection gone wrong. That ended up with me going to an emergency room with cramps and irritation, and a look from the doctor like I was going to be one of her stories (“I had this crazy patient who…”). Vulvodynia isn’t just a yeast infection, and don’t put garlic anywhere near your vulva – they aren’t friends!

After months of waiting, I finally saw an OB-GYN with expertise in vulvodynia. She confirmed my diagnosis of provoked vulvodynia (also called vulvar vestibulitis). Her first course of treatment was a topical compound cream of lidocaine and gabapentin.

A 2008 study of 35 women with local and general vulvodynia women treated with topical gabapentin found that 80% had a 50% reduction in vulvar pain (Boardman et al., 2008). The benefit of topical application is that you avoid the body-wide side effects of taking a pill. If you are interested in a topical treatment, another option is topical amitriptyline and baclofen (an anti-depressant and muscle relaxant, respectively). A small retrospective study that investigated this treatment found: 29% of patients reported no or little (<30%) improvement, 18% reported moderate (30-60%) improvement, and 53% reported much (>60%) improvement (Nyirjesy, 2009).

Unfortunately for me, after 3 months there was no change in my pain (and no sex either). I also felt that the base cream was even causing some irritation around the outer labia. So, the journey to find an effective treatment continued…