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.

IMG_8837First 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).

11137908_1567817076831471_1478026444_nIt did nothing.

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[1] 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[2] 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.

10885350_10153303133819853_6437307083580268086_nI 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[3].

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?

  1. I had one done later, the results from which pointed to a whole lot of nothin’ []
  2. Where, incidentally, you can get fluconazole over-the-counter. Which I most definitely did. []
  3. 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 []
  • AfterDark

    I had biometric internal vaginal PT for nearly a year. It did help some with the every day pain. The long term affects for me are no sex. Penetration is difficult and orgasm is next to impossible. If I actually do orgasm, which is rare, I get a Charlie Horse that starts in my but cheek, travels through my hip and follows through to the inner labia – all on the left side. And when that muscle starts spasming, it could be 5 minutes or 5 hours before it stops. I also have permanent structural damage to my bladder. Basically nothing below my waist works the way it was designed to do. I’m glad to see another blogger discussing this topic. There’s so very little information anywhere, even within the medical community, about this condition.

  • Sara Testarossa

    Just wanted to say that I’m wishing you all the best with your health, physical, mental, and emotional. I read your post on your mental health struggles and identified with quite a bit of it, and having physical problems (mysterious ones at that) piled on top sounds utterly exhausting and spoon-stealing. I hope that whatever treatment is working keeps working. And it is cool that you got to review something you never thought you’d need (dilators) and that they’re good quality, even though it sucks you need them. Sending you good vibes! (hehe vibes)

  • crazymakeupgirl-92

    I get this, so much! but sadly yours is on such a bigger scale, im glad mine was sorted out in the end! in may I had my first UTI in my adult life (im 23). I went to the doctors, went onto antibotics and that was that in a week I was feeling like myself again. however in june I suddenly felt like I had one again. it was awfully sudden and very painful! I went to the doctors, they did a exam, took swabs and a water sample and sent that all off, but the dip test showed no infection so I was sent home being told I needed to wait a week for the results. I spent a week sat straddling my chair in my room the only way I was comfortable. got to the point that I couldn’t move to get myself food or drink and phoned my mum crying. painkillers over the counter and anything else meant to help UTI were doing nothing.
    the results a week later? they found nothing, and my doctor said. “theres nothing else, just drink lots”. and that was that.
    that started 2 weeks of phonecalls to doctors trying to get them to listen, like you I have mental illness and I still feel now that they didn’t believe me because of this. it was only 3 weeks after it had started that I had enough, I was crying unable to stand, sit, lay down! I was a wreak. it felt I was peeing razor blades, pain and discomfort around my urthera and being happiest in the bathroom. I was drinking at one point 6 litres of water to no avail.
    im in the UK, and I found a chemist were you can buy antibotics for things like a UTI over the counter. £50 and 2 courses later I was back to almost normal.
    like you, I have possible long standing damage, I cant hold my pee like I used too and I get discomfort & pain very easily around that area.
    I cant imagine going through it for months, I hope they get to the bottom of this sooner or later x

  • Polly Vincere

    I also have often been uninsured or on the state’s plan in recent years. You are right that discussing the pain gets you labeled as an addict. Unfortunately sometimes the pain is the clearest symptom of the problem.

    I’m sorry you had to go through all that to get help, and that even then, it’s only minimal. I hope you find what is wrong, but more importantly, a doctor who will listen and TRY not to treat you like a number.

    I also hope a doctor reads this and takes the time to reconsider what to do when a patient doesn’t get better.

    • I’m currently seeing a uro-gynaecologist at a research hospital, as well as a physical therapist who specialises in pelvic pain disorders. While there is not real cure for this situation, it is something that can hopefully be managed more-or-less. It very much is like other chronic pain conditions- good days and bad days.

      • Polly Vincere

        Chronic pelvic pain requires a lot of spoons, for sure. I’m glad you have such qualified help. I’m also thankful you mentioned the physical therapist. I’m going to mention that to my gyn to see if I can get relief myself that way.

        Also, thank you for writing this. It took a lot of courage and gives me courage and hope for my own issues. ♡

  • Wow. WOW. Halfway through I’m thinking “They NEED a real-life Dr House” (why doesn’t he exist??). I am so sorry you’ve been through this much bullshit. I’m starting to wonder what is happening in med schools that I am hearing too often from myself and my friends “WHY did it take me so long to find a doctor who would think of this?”. I am starting to really appreciate, and want, the doctors willing to think outside the box with treatment. I hope you find something that cures this soon.

    • I have mixed feels about a real-life Dr. House if for no other reason than the number of times an episode that he nearly (or actually) kills the patient.

      This isn’t something that will ever really be cured, as far as anyone can tell, but it is something that can be managed. More or less.

  • Artemisia FemmeCock

    I’m glad you’re feeling a little better, for whatever reason. Sending so much love and cute bats.