Every vulva is unique and beautiful and deserves to be cherished.

Sex Education. (2019-).

So… It’s been an eventful year, and everything had become a bit much. Something had to budge, and as such my entries throughout the year were never published. My apologies for the disappearing act, but I’m back. Here’s to a new year I suppose?

You know those sorts of quirks that people are born with? Surely you know someone with an extra nipple, or a birthmark shaped like a lightning bolt or heart. Well, I have an extra bellybutton. Sort of. 

Three months ago, I had a Mitrofanoff procedure, or an appendicovesicostomy… try saying that ten times fast. In laymans terms, the surgeon removed my appendix and used it as channel to connect my bladder and abdomen. This channel is then used for catheterisation. Basically, I have a hole in my stomach, below my below button, which I stick tubes through to pee. I know, it’s a lot to wrap your head around… even for me. I mean, imagine looking in the mirror and seeing your appendix sticking out of your stomach like an outie… it gets trippy.  As far as “miracle cures” go, this has shown me greater benefits than any number of cranberries thus far. Plus, I can pee standing up – I know every girl is jealous after reading that.

Prior to this procedure, I did intermittent and in-dwelling catheterisation (IDC) via the urethra. I have been doing these procedures independently for about five years. You could certainly say I’m well-versed in the procedure and female anatomy. Now, before you start about the vagina, let me clarify something: the vulva describes the entire organ; the vagina is an opening connecting to the uterus; and the urethra is a tube connecting to the bladder. Constant catheterisation and trauma to the vulva resulted in a severe case of vulvodynia.

Vulvodynia describes chronic, often invisible, and unexplained pain of the vulva. It makes certain clothes impossible to wear, penetrative sex terrifying, and urethral catheters a literal hell. Imagine everyday multiple times a day, trying to insert a tube through your urethra and into the bladder. Could you imagine? Probably not. It causes discomfort, though it calms down upon removal. Now imagine, every single night inserting a large tube into your urethra, and into the bladder. Then instead of removing it, you inflate a balloon in your bladder, and attach a drainage bag. Then imagine both procedures with a hypersensitive vulva. Now you’re to resume your nightly routine and get a full night’s sleep. Bullshit. Every night I had to do an IDC, I had to experience severe physical and psychological distress. Not only did it cause inescapable agony, but very few people acknowledged the pain as real. 

When the surgery was initially discussed, it was considered a potential treatment for repetitive infections, bladder retention, and vulva pain. I was placed on the waitlist and categorised as a Category B elective surgery, for which the wait time is 90 days. 90 days lapsed. I hadn’t had the surgery or been contacted by the hospital. I had been doing IDCs for months on end and was in constant physical pain and mental anguish. Imagine typical teenage angst with a dash of chronic illness and invasive treatments. During this time, waitlists were infinite, and everything was delayed due to limited resourcing, the effect of the pandemic, so on and so forth. I understand that. What I didn’t understand, was why that was not communicated to me. I am doing wildly invasive treatments every day that cause immense physical and psychological distress. I am waiting on a surgery that seems to be the only hope… and I’ve not heard a peep from my healthcare provider. A letter or phone call simply stating that they’re experiencing greater wait times is all I needed. Instead, I was left to wait, with no idea what was happening – was I still getting the surgery? 

Finally, I got a date. Then I got the surgery. During the recovery of a Mitrofanoff procedure, you have tubes coming out every which way – stomal IDC, urethral IDC, epidural, oxygen, IV. It’s a rather tangled web. Unfortunately for me, there was an issue with my epidural and as such I had paralysis on one half of my body lengthways, and sensation on the other. Sensation is not fun following surgery, especially with all those tubes and multiple chronic pain disorders. Days further into my recovery I regained more sensation and with it came more pain. Yes of course the surgery was painful, but today I’d like to focus on the vulva pain. Yet again I was left crying every night because the urethral IDC irritated my vulva. Eventually, I was discharged on a trial run sort of thing. Go home for one night, see how you go, and come back to hospital if needed. All in all, I recovered quite well from the surgery. I was discharged with a bunch of supplies and home turned into a bit of a DIY hospital. I couldn’t risk infections following surgery, and so I remained on a strict medication and IDC regime. Makes sense right? Doesn’t mean it didn’t suck ass. Never have I ever looked more like an old lady – hunchback, holding my newly operated on stomach, carrying a drainage bag like a new purse. And it hurt like a motherfucker. Post-op acute pain, as well as agitated chronic back and vulva pain. 

Weeks later, the stoma is operational. I can now catheterise through my stomach instead of the urethra. There’s a learning curve, as there always is with these things. But now, I am doing far better than previously. My pain levels and infections have reduced, and I’m still an insomniac but am no longer kept awake due to agonising vulvodynia, as witnessed in the surgery lead up and recovery, as well as years before. Not to see the world in rose-coloured glasses – but this is perhaps one of the best health outcomes I’ve experienced to date. 

Now I know everyone avoids discussing reproductive and sexual health like it’s the plague, but it is a conversation that needs to be had. I cannot articulate this enough – reproductive health is imperative to quality of life. It took the longest time, but I finally feel as if my vulvodynia is under control. It still hurts don’t get me wrong, but I can wear tighter clothes and experiment as a teenager should be able to. I know this is a taboo concept, but I’m keen to start a conversation around it. Sexual health issues are very real. They need to be treated as such. They need to be spoken about. I invite anyone with their own experience to contact me on the socials or in the comments; I will try to use this blog to start a conversation. I’m thinking Sex Education meets Greys Anatomy… what do you think?