I’ve talked before about my struggles with mental health treatment. I know I’m often found going into tirades about it on twitter. What I haven’t talked about to nearly anyone is that since roundabout last August or so, I have been struggling with an ongoing health issue which has made my whole profession as a Sex Utensil Savant more than a little awkward. My genitals have been a no-go zone nearly this entire time, either due to extreme pain or physician’s orders.
First we thought it was a UTI, so I went on antibiotics. Then it was another UTI, so I went on different antibiotics. That UTI got worse, so we changed antibiotics. A brief respite before once again the constant bladder pressure, the persistent urgency with barely half a teaspoon’s worth of pee, my urethra so swollen I couldn’t find my vaginal opening anymore, and excruciating pain. Discomfort and pain that kept me awake despite stacking my standard Ambien with an extra Xanax or two. I was going through boxes of Cystex and Uricalm once per week, at least. I lay exhausted and restless in bed in with my (albeit adorable) hot water bottle, or surrounding myself with icepacks like orbital rings.
Still no relief and mentions of Interstitial Cystitis/Painful Bladder Syndrome (the Fibromyalgia of urinary tract issues) started cropping up. I had to fly cross-country for my father to have brain surgery so a stopgap script for “overactive bladder” antispasmodic medication began, which I thought was helping but in hindsight I’m not so sure. My mother remarked at how little I was eating. It was true- anything that puts any amount of pressure externally or internally felt awful.
I got back home and off to a urologist for lots of peeing in cups, and lots more antibiotics. Nothing was getting better. I had a cystoscopy done, and talk of Cancer began. The numbing jelly they squeezed up my junk gave me the first relief in ages, but that was just a lucky side-effect which wouldn’t last long. Next up was a CT scan, the results of which said probably not cancer, but also no other real suggestions. A six-month regimen of- you guessed it, more antibiotics was prescribed. I was already restricted in what I was allowed to eat and drink based on my food allergies, and I was further restricted to basically nothing delicious at all and no way to make it delicious.
I was in pain. I had BEEN in pain for months, but as most of my life has been spend uninsured or welfare insured I’ve learned not to bring it up lest I be seen as drug seeking. I’d been suffering through alternating hot water bottles and every icepack and bag of frozen veg I had in the house. I finally talked about the pain, and I finally told my partner. I’m sorry it took so long. I was prescribed the gothest of medicines ever: Belladonna and Opium. Except no one carries it. NO ONE. I was quoted at 7-14 days from the time I dropped off my prescription to when I *might* see my medication. Medication for severe pain. I managed to obtain some clandestine relief and finally got what was supposed to be the magical medication. I was literally shoving “flying ointment” up my cunt (I had the choice of where to stick it, and for once I opted away from the butt).
The day after starting it, I was in so much pain that I called my parents. After hours of talking to them pondering going to the ER, calling my urologist at home and being given no real suggestions (but he seemed legitimately upset at his lack of options for me), texting with friends trying to weigh the pros and cons of an ER given my trypanophobia, and another hour or so talking to my folks, I texted my partner. “I’m trying to decide if I should go to the ER”. They graciously offered me a ride if I needed it. After back and forth and mostly me thinking out loud via text “I think I do need to go. Yeah, I do.” and so we went.
The ER I chose to go to was amazingly gracious about my trypanophobia and saw me remarkably quickly. After talking to the doctor we determined that trying to run a bunch of imaging tests that had already been done, that an MRI could maybe show something but would be less costly to me outside of an ER visit, we opted for symptom management. I was given Valium which helped remarkably with the bladder pressure, and straight up oxycodone which of thankfully helped the pain. The doctor came back, and looking at my chart he asked me if I’d been treated for any fungal infections. I hadn’t. I did have a standing script for your basic fluconazole at the pharmacy, given all the antibiotics I’d been on, but I’d somehow managed to not get a vaginal yeast infection through the whole ordeal. “I’m going to try something a little unusual- it can’t hurt, but it might help” and gave me what was essentially a double dose of Diflucan.
I woke up the next morning and didn’t need the Valium OR the opiates. We were on to something. Reporting back to my urologist net me a one-week round of antifungals (more fluconazole) and I felt better. I felt GREAT actually. I even kept my trip to Toronto to present at the Feminist Porn Awards– where I looked FUCKING FANTASTIC. It turns out you can get a fungal UTI. They’re rare, but they happen. Why no one, including my urologist, tried this sooner I have no idea.
I started to feel better, and then the irritation started to come back. I tried tossing cranberry juice at it (I wouldn’t learn until later that this probably exacerbated the situation) and trying to shove as much fluid in me as possible. I went back to barely peeing, my urethra swollen and red, and my period came two months early. Talk of long-term or possibly permanent damage to my ureters, bladder, urethra, kidneys, and liver were (and still are) all on the table.
I resumed the icepack/hot water bottle regimen and the Valium, and it helped a bit. I learned that I can actually wear an ice pack long enough to chill my urine inside me. It’s not advised, but it’s possible! I have good days and then bad days, and some half and half days. What I don’t have though are any spoons. I think I dropped all my spoons somewhere back in 2014. And I’m starting to run low on sporks.
Bodies are bullshit and they commandeer our whole lives sometimes. There’s a feeling of betrayal that I’m struggling to come to terms with. There’s the realisation that I need to ask for help, and I need to trust those who tell me they care about and love me to be there for me to help. I need to trust. I need to heal. I need my life to stop being an episode of House MD.
There have been two positive developments recently in the form of medication and physical therapy. I’m seeing improvement, but it’s unclear exactly why. The incredibly restricted diet? The nortriptyline? The PT? Things just going into remission on their own? Who knows. I’m still not eating very much, I’m still in varying degrees of pain, and I’m still not really sure what is going on. But I am better than I was earlier in the year, so I’ll take it for now. I can still eat avocados and sashimi, so it can’t be all bad can it?
- I had one done later, the results from which pointed to a whole lot of nothin’ [↩]
- Where, incidentally, you can get fluconazole over-the-counter. Which I most definitely did. [↩]
- Though I do get a sick enjoyment out of listening to Massive Attack now when I walk through the medical complex to see my uro-gynaecologist [↩]