Has a trip to the toilet ever been a life-changing moment for you? In 2010, it was for me.
I was still in uni, and scrawled my friend Emily a note during a particularly boring presentation that said “toilet, brb”, excusing myself to answer nature’s monthly call. Sorry it’s not the most interesting note, I didn’t realise at the time that this would be the start of story I’d be recounting to the public.
Now, not to get all clickbaity on you, but what happened next sure surprised me, and if you’ve ever used a tampon it will probably surprise you too.
As I inserted my regular-sized, cotton tampon, my jaw dropped in pain. It felt like a serrated-edge knife, wrapped in sandpaper, slicing up the right side of my uterus.
Assuming it was some sort of freak incident, I figured the pain would die down in a minute, and returned to class. When I could still mentally trace the knife-like line the tampon had taken half an hour later, I removed it. The searing pain took another hour to die down from there.
That was October of 2010. Now, it’s five and a half years later and I’ve seen 17 different specialists, been on 16 different forms of medication, and done every test and procedure under the sun, including doctors inserting a camera wherever they could fit one, an injection of pure alcohol straight into my vagina, and Botox into my pelvic floor muscles. Basically? My vagina is a real housewife from hell.
It’s five and a half years later and I’ve seen 17 different specialists, been on 16 different forms of medication, and done every test and procedure under the sun.
Calling the journey to find answers “frustrating” would be the understatement of a lifetime. Calling it “infuriating” doesn’t cover the feelings of hopelessness, helplessness and despair. The most apt description I can conjure up is “it’s fucked”. The process of trying to deal with chronic pain in Australia is fucked.
After my excruciating trip to the bathroom, I made an appointment to visit my local (female) GP. She referred me to my first gynaecologist, an overworked woman who was perpetually running 90 minutes late. Her waiting room jam-packed with pregnant women and noisy children, I was the only patient of hers who wasn’t pregnant. When she finally called my name, I told her all about my pain, how long it’d been going on, and the excruciating nature of it.
She put me on the pill and turned me away within 15 minutes. In the three visits I made to her, she never once examined me.
I visited my first gynecologist three times and she never once examined me.
My second gynaecologist was better, although she had all the social skills of Angela from The Office. She examined me, prescribed me anti-inflammatories (without warning me to take them with food), and we spent the next year trying out every steroid cream under the sun. She also performed a hysteroscopy to see if there was anything odd going on from the inside out, the results of which showed nothing unusual.
In late June of 2012, 14 months after that trip to the toilet, I expressed my frustrations at not making any progress. I had no diagnosis, no relief, and no answers. I was six weeks away from taking a three-month holiday to America that I’d been planning since I was 14, and as a single girl in her mid-20s, I wanted the option to be sexually active if I chose.
“Well, I guess I’d better take another look,” gyno #2 said, opening the doors to the adjoining examination room.
The examination went the same as all the previous ones: She poked me, I yelped in pain, she said “ergh, so that’s still quite sore, isn’t it?” and left the room, allowing me to get dressed.
I returned to her office and tenderly took a seat. Once provoked, the pain would last for up to half an hour, so in order to sit down, I would have to cross my right leg over my left and shift all of my weight onto my left side. I waited for her diagnosis.
“Well...” she began. “I think I may be out of bright ideas on this one.”
With that, she referred me to a vulva specialist, charged me $100, and sent me on my way. The entire appointment took under 10 minutes, or as I like to recall it, $10 a minute to be poked in your sore vagina and told that they can’t help you. The situation was so absurd that I laughed out loud to myself about it on the way back to the car.
After wasting almost a year of my life, my second gynecologist charged me $100 - $10 a minute - to tell me that she was "out of bright ideas".
The wait to see the vulva specialist was over six months in the public hospital, and over a year at her private rooms. Gobsmacked at the prospect of being in pain for another six months, I put myself on the waiting list and got a referral from my GP for gyno #3.
My third gynaecologist was a soft-spoken, kind, elderly man. Before this appointment, I had requested to only see female doctors for my female problems, because I’d been too shy and embarrassed to even speak to a male doctor about anything of the sort. But now I was begging my male GP for a referral to any gynaecologist who could see me, and setting up an appointment with my new male gynaecologist.
The examination only took about two minutes. He took a cotton bud and pressed it gently against different parts of my vulva, until he hit the spot where I yelped in pain.
It was as he suspected, he told me, once I was dressed and sitting ever so tenderly. I had Vulvodynia, and although it was only in the one spot, it was quite bad. He prescribed me Endep, an anti-depressant, which was supposed to numb out the nerve endings, and a weaker version of one of the creams I had already been taking, that I was to use daily. I left feeling elated. I had a diagnosis, and I had a prescription for a cure in my hand!
The next week was a blur as I adjusted to taking Endep. I was sent home from work because I was so strung out I couldn’t function. Working in retail at the time, I couldn’t comprehend the questions customers were asking me, my body felt heavy and lethargic, as though I had the flu, and I was more exhausted than I had ever been in my life. Unable to work for four days, I was determined to keep taking what I perceived to be the key to my cure.
At some point during that week, I did Google Vulvodynia, and as it turns out, it’s kind of a bullshit diagnosis. Vulvodynia literally means “pain of the vulva”, so getting a diagnosis doesn’t actually mean anything. You go to the gyno and say “I’ve got this pain, here,” and point to your vulva, they poke you there and basically say “ah yes, you’ve got pain in your vulva!”, except they call it Vulvodynia.
You go to the gyno and say “I’ve got this pain, here,” and point to your vulva, they poke you there and basically say “ah yes, you’ve got pain in your vulva!”, except they call it Vulvodynia.
At the time, though, I wasn’t too concerned about this. I mean, Charlotte from Sex and the City had Vulvodynia in that one episode (where they used it as a punchline about having a "depressed vagina" rather than addressing it in any realistic manner), they put her on anti-depressants and she was fine! Unfortunately, things didn’t work out quite as smoothly for me as they did for Charlotte in Sex and the City.
To a small degree, the Endep helped. While I still experienced pain when I touched the area and the thought of sex still terrified me, I was able to use tampons again. But the side effects of this drug far outweighed its benefits, for me. I felt like I had the flu, every single day. My muscles were lethargic. I felt like a rock in quicksand trying to get out of bed every morning, and as a morning person, the difference in my routine was vast.
Aside from that, the hot flushes I got were intense. Thirty seconds of sunlight could trigger a hot flush that would last for hours, sending a waterfall of sweat trickling down my back, and forcing me to adapt the counter-productive solution of wearing a cardigan on 40-degree days to hide the fact that my singlet underneath was drenched through.
The weight gain was also not ideal, as I gained 10kg in the space of two and a half months. With no energy to exercise, my mood dropped, along with my self-esteem. I no longer felt like myself. In my medicated haze, I watched on as the person I had once been disappeared and left a sad, defeated shell of my former self in her wake. I waited for my appointment with the vulva specialist, building her up in my mind as the solution to all my problems over the months-long wait.
How wrong I was.
Gynecologist #4, the vulva specialist who I had anticipated to be my light at the end of the tunnel, refused point blank to take me off Endep when I explained all my symptoms.
I cried as I explained to her that I was miserable on the Endep and wanted to go off it because it made me want to die. She asked me if the Endep was helping. I replied that the problem was far from “fixed” and the side effects were making me miserable and depressed so it didn’t feel like I was getting any benefit out of it.
If the problem was that pain made sex a non-option, and the Endep didn’t help with that problem, then was it really helping at all if it was also giving me all of those side-effects?
“Do you have a boyfriend?” she asked.
“No… “ I replied.
“Well, we’ve got all the time in the world, then,” she responded flippantly, before telling me that she would be “hesitant” to take me off of the Endep because I’d been “teary” through the whole appointment, ignoring my dispute that I had never been “teary” about my situation before being on Endep. She told me to raise my dosage, despite the fact that I’d been on a higher dosage already with no difference to the pain.
The appointment left me gobsmacked and defeated.
Aside from ignoring my pleas to take me off a medication that made me wish I was dead, the implication that my being in constant pain for 18 months was not a pressing issue unless there was a man at home whose sex life was also suffering was unbelievable.
Gyno #4 ignored my pleas take me off a medication that made me wish I was dead and implied that my being in constant pain for 18 months was not a pressing issue because I didn't have a boyfriend.
These appointments were typical. As I tried every treatment, nothing worked. I had a collection of failed medications in a box at home, and my gynaecologists tried everything from traditional methods to “let’s see what happens to those angry nerves if we flush them with pure alcohol” – the answer to which is, “nothing happens, but the procedure remains the single most painful experience of my life to date as someone who has been in pain every day since late 2010”.
Four years down the track, I found a pelvic pain team that worked for me in Adelaide’s Dr Susan Evans, a gynaecologist, laparoscopic surgeon and pain specialist, along with Patricia Neumann, a pelvic floor physio, and Michelle Martin, a psychologist and hypnotherapist. After spending thousands upon thousands of dollars, I was finally told that I “probably” had a central nervous system sensitivity brought on by a bout of appendicitis in late 2010, which also explained why my stomach went from being one made of steel to one that can no longer tolerate wheat, onion, garlic, lentils, and anything else fun. Her team, like the team I see now at Sydney’s Women’s Health and Research Institute of Australia, specialises in tackling these difficult cases with lots of different symptoms together as a team, sharing files and information so that the patient doesn’t have to run all over town for their various ailments.
Dr Evans introduced me to capsaicin cream – literally an over-the-counter medication used to treat shingles made from whatever it is that makes chilli hot. It sucks, but it works. It is so painful to put a cream that is essentially the fire of a thousand chillis onto nerves that already hate you. It feels like a thousand needles stabbing you deep in the vulva. But then the next day? It’s better.
Two weeks after I started using this cream, my nerve pain was gone, after four years. The science behind it, as Dr Evans explained to me, is essentially “fight fire with fire”. The idea is to put the nerves in SO MUCH pain that it exhausts them to the point where they realise that everyday stimuli, like, say, a tampon or sexual activity, are fine.
But even with my nerve pain under control, I still have a lot of muscular problems. This is because when you have nerve pain, the muscles all react to those nerves sending your brain pain signals. It’s like, if I slapped you across the face, your face would tense up at the pain (sorry about that). But if I followed you around for four years, slapping you when you least expected it, all day, every day, eventually your muscles would be trained to stay tense in anticipation for pain, and making everything worse in the process.
For that, I do pelvic floor exercises, and recently had Botox done on my pelvic floor muscles, the idea of which is to freeze the muscles so that they give up fighting me and allow me to make progress in my physiotherapy. If only they’d had some left over to pump into my forehead to help erase all the stress of the last five and half years, right?
So the questions I am left with are: Why did it take me 17 specialists and four years to find a cure that was sitting on the chemist’s shelf the whole time? Why did I have to spend all my spare money on upwards of 15 different, often expensive medications? Why did I have to spend thousands of dollars having every test under the sun? Why don’t most specialists have any idea how to deal with the elusive case of Vulvodynia? And why do so many women have stories that are so similar to mine?
Here’s the thing. When this first happened to me, I thought I was some unlucky snowflake, the only girl in the world to be struck down by such a plight. Over the years, I’ve realised that my perception was so far from the truth. In fact, it’s estimated to affect between 15 – 25% of women, and I’ve come across a few of them in my own journey for answers.
Why do so many women have stories that are so similar to mine? Between 15 - 25% of women suffer from pelvic pain, so why is my story of dealing with so many specialists and having to spend so much time and money searching for a cure the norm?
They all have similar stories to me. Frustrated tales of doctors who don’t understand, who won’t listen, of treatments they’ve tried to no avail. Stories of distrust and disillusionment with the medical community. Stories of great expense, long waiting lists, and of feelings of hopelessness as they struggle to find the strength to keep on going when the road looks like it will never end.
Five and a half years down the track and still in pain every day, I am one of the lucky ones because I have a team who knows what they’re doing and my pain is, for the most part, under control. I can have sex again. I would like for there to be a day in the future where I don’t experience any pain, but I’m grateful to be where I’m at.
Image by 2il org (Flickr).