At 19 I Trusted Doctors and it Just Didn't Occur to me to Question Their Judgement
To say I was systematically ignored by the healthcare system for 16 years would be something of an exaggeration. It was more like 15 and a half years. I suppose the problem wasn't that they were ignoring me per se, rather that they completely dismissed every single word I uttered, reassuring me that "some women's periods are just like that".
Let me tell you what some women's periods are “just like”. Some women wake up in the middle of the night in excruciating pain, take an exorbitant amount of painkillers that barely make a dent, and sit on the toilet for at least four hours, expelling all manner of bodily fluids from every orifice. When that's done it's time to go to work, exhausted after only three hours of sleep and still in pain. These women then double up on sanitary items, because using just one is a mistake they've made too many times. They insert the largest size tampon they can find, and also place a sanitary pad designed for night-time use in their underwear for the inevitable leak. They then travel to work, and upon arriving realise that despite their best efforts, they've leaked through their underwear and now have a delightful patch of red on their rear, letting everyone know what time of the month it is.
With that, they head back the way they came, having to either beg to work from home, take an unnecessary sick day, or rush back to work as fast as they can after getting changed and going through the entire process all over again.
Make no mistake, this is not normal, not by any means. And it's exhausting both physically and emotionally to have to do this every single month. More exhausting still is telling doctor after doctor that you can't live like this, while they assure you that you most certainly can.
Over the past 16 years I must have seen at least seven different doctors, nurses, technicians and other medical staff regarding my period and only one of them ever took me seriously. In the beginning, I think I just had a lot more faith in doctors than I do now. Perhaps it was naive of me but back then, when it came to authority, intuition went out of the window and I was left with this feeling of "this doesn't sound right, but I didn't go to medical school, so what do I know?"
I was 19, studying at university and getting sick and tired of losing at least a day a month to pain and heavy bleeding, so figured it was time for me to see a doctor about what I felt by this point was not 'normal'.
This doctor didn't really explain anything to me regarding what could be causing my symptoms, she just recommended that Depo-Provera would be a good option for me (Depo-Provera is a birth control shot that’s administered every three months). She showed absolutely no interest in investigating the cause of my symptoms at all, rather just giving me an option that would lessen the pain and bleeding.
Now that I'm much older and somewhat wiser, I can see that I should have asked many more questions before agreeing to it, but at 19 I trusted doctors and it just didn't occur to me to question their judgement. So I rolled down the top of my jeans and she administered my first injection. It was completely painless and seemed like a simple solution to my problem.
Except that I ended up having a period for six full months. Not exactly what I had in mind.
After the shot, I discovered that the receiver "may find that the shot makes your periods heavier and longer...This may resolve after you’ve been using Depo-Provera for several months". For someone who already had long heavy periods, the last thing I wanted was longer heavier ones, and yet this side effect was never mentioned to me as a possibility. Had it been, I highly doubt I would have gone down this treatment route.
Now, I want to take a moment to remind you that the internet wasn't like it is today, there was a lot less information and women weren't sharing their stories online. I don't think I'd ever even heard the words ‘endometriosis’ or ‘polycystic ovaries’ and it certainly never occurred to me to Google ‘Depo-Provera’. I’m not convinced I would have found anything back then anyway, even if I’d tried.
Every time something like this happened, it put me off going to the doctor again for this specific issue, sometimes for years at a time. Nothing I'd ever been told made me believe that these symptoms could possibly be signs of a serious problem, or that there was any way of getting rid of them. I’d been gaslit into thinking that this is just part and parcel of being a woman. Perhaps you think it's too much for me to say I was gaslit but I can assure you, by the end of this story you’ll understand just how easy it is for doctors to make you question everything!
Before I knew it, 2016 rolled around and I still hadn't had a single doctor take me seriously. I had moved house so decided to try again with my new family GP, hoping that this time I may have better luck. Well here's how that went…"Why don't you just go on the pill?" Again, no explanation, no potential side effects, just that apparently this is the solution to all of my problems. It’s incredible that he would know that, without actually knowing what my 'problem' was. I talked him into referring me for an ultrasound, which he did with an air of 'it’s a waste of time' about him.
So off I went with my referral form, not considering for one second that anything untoward would happen at the clinic. After all, they’re simply undertaking whatever has been requested by the doctor. And yet somehow I left that building without having the ultrasound and believing that I couldn't have one.
This is where I suppose I need to explain that this story isn't that tale as old as time of women not getting the healthcare they deserve, it goes much deeper than that. It's the story of how our ‘free’ healthcare system was only accessible to straight women at this clinic (and I’m sure at many others) and how sheer ignorance can turn into homophobia.
I have no idea what was written on my referral form, I honestly didn't read it, but the technician did the external ultrasound, then before moving onto the internal one she read something on the form and asked, "Are you a virgin?" To which I replied "No" and she just looked at me, then back at the form, and back at me again.
"I don't have sex with men if that's what you're asking", and she repeated, "So you're a virgin". "No". "If you're a virgin we can't do this procedure". Exasperated at this point I repeated that I'm not a virgin and her final response was, "If you haven't had sex with a man, we cannot do this. It's legislation".
I cannot explain how surreal this moment was and how helpless the situation felt. She wasn't going to do the procedure no matter what I said and her insistence that it was legislative, while completely nonsensical, still made me question myself. I figured the doctor would have something to say about it when I went back for my ultrasound results, so I left with little fanfare.
That optimism was short lived. He couldn't have cared less, just shrugging and saying “Well your external ultrasound came back normal so I'm sure it's fine”. It makes you wonder what the point is of an internal examination if you can see everything you need to know externally but again, I was exhausted by constantly coming up against people telling me there was nothing wrong. Of course I had all of my symptoms, but this doctor was adamant that the pill was the only solution and he wasn't willing to offer any more.
I would like to say that my mistake was going to a male doctor, but I've had the exact same treatment from every single medical professional I've seen, either male or female, so at this point that seems irrelevant.
In hindsight, my mistake was not standing up for myself when something was obviously very, very wrong. What did that ultrasound technician think? That my hymen was still intact and she was going to take my virginity with the probe? What does virginity even mean in this regard? Is she telling me that my anatomy is different to that of a woman who is sexually active with a man because I've never had a flesh penis inside of me? And that I don't deserve healthcare because of it?
Needless to say, this humiliation turned into another two years of silence and monthly pain while I tried to deal with the symptoms through hot water bottles and codeine, neither of which were particularly effective.
Then in 2018, I found myself at the Hassle Free Clinic in Toronto and thought that this would be the perfect place to ask about my previous experience. All the doctors are female and deal directly with sexual health issues. Being so close to the Gay Village, it's one of the most LGBTQ2S+ friendly clinics I've experienced.
So, guess what, it turns out that there is no real legal reason the previous clinic refused to undertake my ultrasound. Who knew?! Okay, we all knew. This is the first time any doctor has ever listened and responded in an appropriate way to concerns about my period.
Straight away she told me that it sounded like endometriosis and then went on to explain exactly why it's problematic, something which no other doctor has ever done. If you aren't familiar, endometriosis is a condition whereby cells that usually grow in the uterus are also found on other parts of the body such as the ovaries, fallopian tubes and even the bowel.
When these cells shed each month they cause inflammation and scarring as the blood has nowhere to go, causing chronic pelvic pain. Symptoms differ from person to person, but this is the most common outcome of the condition. The purpose of the ultrasound is to exclude all other possibilities, as endometriosis can only be diagnosed through surgery, and this is only recommended for those in debilitating pain, or those trying to conceive.
With that in mind, the doctor recommended a specific pill, Lo Loestrin Fe, which she said may stop my periods altogether, perfect for someone in my situation as it prevents any further scar tissue building up. (For those of you concerned by not having a period each month, you may want to read this Guardian article first). She suggested that I try a pill treatment for a year and if this relieves my symptoms, then it's very likely endometriosis. But first, I needed to get an ultrasound to make sure it's nothing else.
That’s when I spot the referral form. It’s for the same clinic as before.
She told me not to worry, it was highly unlikely I’d have the same technician and that they refer people there all the time with no issues. So off I go ready for ultrasound round two, not thrilled about the prospect of going back there, but telling myself that the doctor was right, what would be the chances of having the same technician twice?
Sadly, it turns out that it doesn’t matter who I see at that clinic, they all seem to believe that women who do not have sex with men are virgins and cannot have transvaginal ultrasounds.
"Are you a virgin?", this new technician asks. I REALLY need to start reading my referral forms. While I refuse to believe anyone wrote the word 'virgin' on there, it obviously says something that's making these women ask this question.
But this time I was ready. I said, “No I am not, this happened last time. I don't have sex with men but I am not a virgin”. She spouted off the same old, “It's legislation”. I retorted that it’s not legislation and my doctor referred me here knowing my sexual history. I then asked, "If I had sex one time with a man at the age of 17 and never again since, would you do this procedure?" She said yes, so I asked "How does my anatomy differ to this hypothetical me?" Her response? "It's legislation".
I have never been so frustrated in my life! I told her I wasn't leaving without speaking to a manager, and after leaving the room to consult with someone she came back with not one, but two 'solutions.' One, I was to insert the probe myself. The perfect solution to any potential lawsuit; ask patients to undertake their own medical procedures!
But the second option was really something else. She suggested that instead of inserting the probe into my vagina, she could do it rectally! I mean, I'm no medical expert but this doesn't sound like the solution she thinks it is. Mostly because she's trying to solve a problem that doesn't actually exist but also because I would absolutely love to know the logic behind this suggestion; that somehow it's going to be less intrusive to insert something rectally than transvaginally?
Again I left the clinic with no testing, even more humiliated than last time and truly doubting if I would ever get this ultrasound that I needed. In my despair I called the Hassle Free Clinic. It was the only place that had listened to me and I felt like they would be able to sort this whole mess out.
For once, my optimism paid off. They acted immediately, calling the clinic and getting a manager to call me back. They then found a different place for me to get the ultrasound and booked me an appointment that went exactly as it should have done. Minimal questions, no judgemental comments, and the procedure was completed without any fuss. I also didn't experience much in the way of pain either, of course it was a little uncomfortable and not my dream way to spend an afternoon, but nothing like I’d imagined after the two year build up.
Physical health wise, I have never been happier since getting the results back from the eventual ultrasound. They showed nothing untoward, so I started taking the pill to treat the suspected endometriosis and haven't had a period since. It's been the most freeing experience to not have to deal with that every month, and fortunately for me, I’ve had no side effects from what I can tell. I know that's not the case for everyone; I feel fortunate in that regard. Perhaps there may be future health implications, but right now this is the relief I needed so I can get on with my life.
However, the humiliation of those encounters stayed with me. For many months I didn't think there was anything further to be done about it. The manager had apologised and I didn't even consider that there were other possibilities. And yet for some reason, in late October 2018 it suddenly dawned on me that I was denied healthcare because of my sexuality. This is where the second heroes of the story come in, the Human Rights Tribunal of Ontario.
I wrote to them regarding my case in November 2018, and by February I had a date arranged for a mediation session with the clinic. They took care of absolutely everything and it was an extremely straightforward process.
I had this ridiculous idea that I'd be sitting in a room across the table from them where we'd argue over what happened until they finally crumbled and admitted that they were wrong and begged for forgiveness. But what actually happened makes WAY more sense!
We sat in separate rooms while the mediator went back and forth between us until an agreement was reached. I had to sign a confidentiality agreement before entering into mediation so I can't tell you the outcome, but what I can say is that the case is now settled.
I want to make this clear, anyone who has been told they cannot have a transvaginal ultrasound because they have not had sex with a man, regardless of their sexuality, needs to know that this is factually incorrect.
Everyone should have access to healthcare regardless of their sexual activity, and should absolutely not feel humiliated because of who they choose to sleep with. In this fantasy world that the technicians were living in, only straight, sexually active women are entitled to know the state of their internal organs. Everyone else can just deal with the unknown. And the fact that at least three people in that clinic alone believe this to be true, tells me that this practice is more widespread than any of us care to admit.
It took me two years to reach a point where I truly realised what had happened to me, leading me to conclude that there must be hundreds, if not thousands, of people out there experiencing similar things on a daily basis, with no safe space for sharing or discussing their feelings.
So I created a website www.queerhellth.com where people can share their stories anonymously. This site is designed to help those who have no other outlet, no place where they feel comfortable sharing their experiences, and allows them to tell the world the realities of accessing healthcare as a member of the LGBTQ2S+ community.
Stories can also be submitted via Twitter, email, or through the Facebook group. This resource isn't just for people affected by poor healthcare. Whether you're a member of the community or an ally, you can effect change by using social media to share stories and help spread the word!
I hope that by empowering individuals to share their personal experiences and making these stories public, we can work towards building a healthcare system that’s accessible to all, while turning the shame onto those who truly deserve it.