This was written sometime between November 6th and November 12th, 2022, but at the time I refrained from publishing it as I had more to say – and as usual, burned out before saying all of it. But what's been said here needs to be said.
Last week I was diagnosed with persistent genital arousal disorder (PGAD), which is something I've apparently had for a very long time without diagnosis or treatment. It became worse early this summer when I went off the Effexor and increased my trazodone -- two things that can both cause PGAD to start.
I've been dealing with this since I was in my early teen years, when psychiatrists first put me on an SSRI/SNRI carousel, unable to decide which to keep me on. Since then, my doctors and therapists have blamed my insatiable sex drive on stress, anxiety, trauma, and/or bipolar's "hypersexuality." Those can all contribute to PGAD but they aren't PGAD.
It turns out that what I thought for a long time was an insatiable sex drive (literally insatiable -- the more sexual stimulation I had, the more my body craved it, even immediately after having an orgasm) was actually a chronic pain condition. It can manifest in many ways. In me, it has always felt like my genitals were burning -- I had assumed with sexual desire as when I did become sexually aroused, my genitals burned even more. When it's at its worst, as it has been this go-around since June of this year, it includes a bad case of restless legs syndrome. I can't stop my legs from pumping or rocking, I can't stop my muscles from contracting, all of which feels sexual because that's what my body does for sexual activity.
There are many probable causes of PGAD, most of which I have: Anxiety, panic, depression, catastrophizing, hypervigilance, sexual/emotional/other trauma, other psychiatric comorbidities, sexual functioning, other medical comorbidities, hypertonic pelvic floor muscle dysfunction, pudendal neuropathy, sacral Tarlov cysts, and lumbar disc disease.
There are some treatments, but as with most chronic pain conditions, the best approach is graded and multifactorial. Stress is a huge aggravating factor along with mechanical, hormonal, and other aggravations including friction.
PGAD greatly impacts mental health and it is associated with a high risk of suicidality.
The last time my PGAD symptoms were this bad, it was Labor Day weekend of 2014; due to many factors in my life at the time, I tried to kill myself that Friday. I didn't succeed. All I've ever wanted to do since coming to from that overdose has been to live, to live fully, to live freely. That's what I've tried to do. I started being fully honest with my mental health care team (only to be told, among other things, that I wasn't disabled, that I am cis, that what I thought were my sexual issues made them uncomfortable, that I was fine). Because I didn't have a medical diagnosis that explained what was happening, I was gaslit, had my experience and suffering minimized, and in summary, didn't get the support I needed.
After my overdose, I also started being fully honest with myself about my body and started seeking help for it. Since August of 2014, I've had ten hospitalizations; eight major surgeries; two signficant diagnostic procedures (a subdural bolt screwed into my skull and a lumbar puncture); three ketamine infusions; thirteen nerve blocks or joint/facet injections (most of which were done under fluoroscopy); and at least thirteen CT scans, thirteen MRIs, and nine X-Rays. I failed to track other studies I have had done, such as cystoscopies, nerve conduction, urodynamics, and a lot more. I have accumulated so many physical and mental diagnoses that my providers refer to my case as "complicated," "complex," "extensive," and "out of [their] scope." When I overdosed and started speaking openly with my mental health team, they told me I would probably never be able to work full-time again. Despite all of this, I am continually denied disability benefits and am forced to live in systemic poverty.
In short, since deciding to be honest with myself and my providers about how I was feeling, I've actually been able to live less of the life that I want. I'm not living freely; I'm inexorably tied to the medical industrial complex. I don't want to live this way. I don't want to die. I want to be free. Only the circumstantial facts of my life have changed since August of 2014. I'm still stuck.
I thought that by getting divorced and getting back on Medicaid, my life would improve. I thought I'd be able to have access to the healthcare I needed – which I'd had before getting married, when I was previously on Medicaid. Once married and on private insurance, we couldn't afford the premiums, co-pays, and co-insurance. But I didn't know what was coming – I didn't know that my body would demand care from specialists who, on the whole, do not accept insurance, let alone Medicaid. I was not prepared to receive a diagnosis from a geneticist for a condition in which the leading experts recommend concierge medical care because most hospitalists, let alone primary care providers, have no idea how to treat any of its impacts.
It wasn't naïveté alone that got me into the shitstorm I am in – it was naïveté, genes, medical neglect during my childhood, childhood sexual trauma, and lack of knowledge given to the lay public about how rare medical conditions, capitalism, and the medical industrial complex do not play well together. What has "helped" get me here and trap me here is also enforced systemic poverty, lack of support and education for health care providers, lack of health care providers in general (which could, in part, be solved by policy changes such as universal single-payer health care, loosening of immigration policies to allow more health care providers – as well as people who work in support staff capacities – and their families to emigrate to this rotting husk of a republic, and free higher education), the renewed uptake by those who hold power in the belief of lebensunwertes leben, the bureaucratic nightmare that is the social support system... listing these is stressing me out.
My life stresses me the fuck out. I'm coping and I haven't the slightest idea how I'm managing to do so. Maybe it's the sheer audacity of my desire to keep living, my desire to have the life I want, my desire to feel better. Maybe it's the audaciousness of hope that these things will come to pass despite the odds decidedly not being in my favor. I'm not a superhero like this or even like the one I tried to be.
As Ben Mattlin wrote, I'm not your supercrip. I'm a very lost, very scared, very trapped, very poor, very stressed, very symptomatic, very uncertain person who is not overcoming their disability like a good cripple "should." I'm not okay.