The first time I had an ultrasound was quite the experience for me. I remember being in the gyn’s office, not sure what to expect. In hindsight, I probably should have done a little research about what it was so I wouldn’t have been so surprised, but it skipped my mind. The gyn handed me a large piece of what felt like tissue paper and told me to take off my jeans and hop on the examination chair. I hastily took off my trousers and tried to cover as much as possible with the tissue cloth and I got on it. I remember trying so hard not to laugh as she slipped the probe thing into my vagina. It went in so smoothly too, probably because of the gel they use and maybe because I was still spotting, albeit incredibly lightly after having had my period for almost six months. I was trying hard not to giggle and trying to keep my mind busy for the fifteen-ish minutes it took.
What prompted me to get the ultrasound was the growing fear that I’d been misdiagnosed with PCOS. At the time, I was trying to learn a lot about PCOS and how I could manage it and I’d been listening to a lot of PCOS-centred podcasts as well as following people online who talked about it. While listening to one of these podcasts, I can’t remember which, one of the women said that if you’ve been told you have PCOS but are experiencing confusing symptoms like heavy bleeding, then you should probably get tested to see if it could be something else. She said it in passing but that thought exactly had been on my mind for a while.
I had been on my period for close to six months and while I suspect now that it was because I lost weight too quickly, then I was convinced that I had been misdiagnosed. People with PCOS often complain about not getting their periods for months-years and there I was bleeding for the whole clan. It was such an indescribably uncomfortable experience to be bleeding heavily for months on end, waking up and expecting some respite but instead being met with child-size blood clots. Besides the comment from the podcast, the fact that I was getting very ill also made me book several appointments with my GP.
Before I could get to an appointment though, I took to my trusty friend google to see what else I might have. The first suspect was fibroids. This seemed pretty reasonable as I was aware my mother was dealing with that and that’s what the ultrasound was checking. I didn’t have any fibroids, but I did have cysts on my ovaries. This confirmed to me that I hadn’t been misdiagnosed at least, although not everyone with PCOS has cysts on their ovaries. I was still frustrated though, so I asked the gyn, if it’s not fibroids, what is it? It can’t just be PCOS doing this to me. I can’t remember her answer, but I don’t think it was very helpful at the time.
So, I went back to google. I suspected the possibility of all kinds of conditions from adenomyosis (was convinced I had this) to endometriosis. I felt so helpless because the doctors weren’t taking me seriously. I was aware that being young and black in a predominantly white society might expose me to some bias, on top of that women are often not taken seriously enough by their doctors. This only made me sadder and I told myself I’d pay to get as many tests as necessary done at a private clinic. I wish I could just have told my parents, but I knew they wouldn’t understand so I resolved to handle it myself. When confronted with the cost though (£700-£1000), I immediately gave up this idea. By that time my periods had started to be regular anyway and the heavy bleeding was effectively managed with tranexamic acid, so I figured I’d leave the tests for when I could access them easier.
I think what gave me grief the most was that my understanding of PCOS was so narrow. To be fair, there could be more research on PCOS done, particularly how it affects everybody very differently. A lot of websites say irregular periods are a possible symptom but most people I was listening to reported having no periods at all or light bleeding. Rarely did I come across people with PCOS experiencing such heavy bleeding. So, what I understood to be PCOS at first was just no periods and difficulty having kids. But in reality, many people with it experience a wide range of symptoms including Menorrhagia.
Now, I still do believe there is a possibility that I might have another condition, but I know for sure that I have PCOS. I think it’s really important for people to be informed about how vast and how different the symptoms may be present in people diagnosed with PCOS. In being informed, a person can better understand and relate to professionals their symptoms so they can begin the process of managing them.
Menorrhagia: heavy or prolonged bleeding. It is caused by low levels of progesterone in people with PCOS.
Useful website: What are periods like when you have PCOS? – Northside Gynaecology. [online] Northside Gynaecology. Available at: <https://www.northsidegynaecology.com.au/what-are-periods-like-when-you-have-pcos/>
PCOSTalk 