“For as long as I have had my period, pain has been a constant companion that comes along with it. An inseparable duo that would visit me every month, if not twice a month, for 7 to 9 days. Oh, how joyous I was to have finally become a “women” I thought doubled over in pain. ( I am being sarcastic, I actually hated every minute of my first period and every one since. Who comes up with this crap about it being a great time?)
At tender age of 14, I was blessed to have joined this club at last. The pain I felt during my period was absolutely normal right? At least in health class that’s what they had been jabbering on about. I attended an all girls school, even though I was in pain, I was expected to participate in gym class, athletics carnivals, swimming carnivals and the like, having your period was no excuse
“We all get them here, your not an exception” I would have to beg my mum to let me stay home or write me a note for not participating even though she was on the “I think your being over dramatic” boat. I thought that was the worst of it. Boy, was I wrong.
Though out the following years of high school my symptoms began to grow worse. I remember having a few episodes of being in so much pain that I would faint in class and have to be carried to the sick bay by a teacher and my younger sister. Another time, a student and a teacher found me on the bathroom floor during English class. Needless to say, I had a few episodes like this that would result in a phone call to my mother on multiple occasions and on those multiple occasions she would deny that there was anything wrong with me and I was simply being a “hyperchondriac” or “being over dramatic” and insisted I was fine. I wasn’t. She was furious with me one day for getting my step dad to pick me up after one of these episodes. I still to this day don’t understand why she was so upset with me.
I always felt like there was something wrong with me. That It wasn’t normal to experience THAT much pain during your period. Despite what my mum thought, I thought it was best to seek out some answers for my self and made a doctors appointment. My mum told me over the phone on my way to the clinic “there is nothing wrong with you, you are completely healthy, you just have a low pain tolerance” she was right about them not finding anything and at about 15 years old I was told “some women just get bad cramps” by a doctor. Mum was right I begrudgingly thought to myself.
For years the symptoms kept coming and slowly getting worse. At 16 I scheduled another appointment with a different doctor and they listened to me complain about my “pelvis feeling like its on fire” and “vomiting, breaking out in a cold sweat and fainting from the amount of pain I am in” and they scheduled a blood test to check if I was pregnant and an STI check. This kept happening every time I went to a doctors clinic to discuss my uterine pain and other symptoms associated with hormones. Then when I was 18 they decided it was time to give me an ultrasound. FINALLY. I thought. They will find something for sure.
Now, when I went in for this ultrasound I had to drink a litre of water 30mins before hand. I can tell you, If there was a hell, waiting in the waiting room to be seen with a full bladder was close, but when I got into the room and they lubed up my belly and stated pressing down on my bladder to “get a good look” that, that was my hell. It took every ounce of my consecration not to pee myself. When they finally told me I could “relive” myself I was in turn relived. When I came back from the most glorious visit to the toilet I was told that it was time for an “internal” scan. What?!?! The sonographers holding up this wand. I felt the colour drain from my face… how had my doctor neglected to inform me of this quite confronting practice? My relief was shortly lived and I was back to feeling uncomfortable as I lay there watching the sonographer lube up this camera wand. I had to keep reminding myself to relax. I can tell you that I was far from relaxed about the whole ordeal, but we got there in the end and that’s another uncomfortable experience I can say I lived though. Just like a Pap smear only bigger…
The results from that ultrasound were nothing other than two little cysts hanging out on my left ovary. “Shouldn’t be causing you pain, women can have hundreds and feel nothing” ok toots, I get that, but I AM in pain and I’m starting to get tired of the run around I thought to myself what actually came out was “ but I am in pain?…” so they started me on the pill. It was going to lessen my pain apparently. 2 years later though, next ultrasound, hundreds of the little cysty fucks all over both ovaries and that’s how I got the diagnosis of PCOS… But wait, the plot thickens.
Years go by. I leave high school, go on to uni, go onto getting a full time job at the same time. Only, instead of crushing goals, my body feels like it’s crushing itself. I have to take multiple sick days, miss most of my classes, have to play catch up, jeopardise my job all because of this disease I didn’t yet know I had. I remember one particular day being alone at work and just huddling up in a ball on the floor in pain sobbing trying to get it together so I could get on with the day.
This goes on for sometime and no one can figure it out “geez you get sick a lot, must have a poor immune system” I’m at a loss and for 2 years I am utterly depressed. No one understands what I am going though, no one listens, everyone thinks I am lying or faking these illnesses or being over dramatic. I feel so alone. Why am I like this? Why can’t I just feel healthy? What am I doing wrong? Why doesn’t anyone just understand? I was at my lowest of lows. I felt like I was drowning and that things for me would never get better and I was doomed to be stuck and in pain with this grumpy uterus ( I often refer to my uterus as Freddy Kruger, as I honestly think that if my uterus was a person that is who they would be) at 25 sex began to become unbearable, even using a tampoon was causing pain that it never did before. It was getting worse.
It took me 4 appointments with the gyno before I was able to convince them that I needed a laparoscopy to diagnosis what I was expecting to be endometriosis ( I expected I had endo since I was 16. When I first read the symptoms for endometriosis, I cried. That was my life. There was a name for what I was going through)
The day of my laparoscopy rolled around and I was nervous about the whole procedure as I had never had something so invasive done ( excluding the sonographer and the camera wand) but I was determined to find answers.
When awoke in the recovery room I remember just being out of it and asking for more painkillers and laughing ( obviously the laughing gas had me in a good mood) then once I was actually conscious the surgeon told me that I had stage four endometriosis that was everywhere. They were showing me photos of where it it was growing in my body, all over my uterus, ovaries, bowls, pouch of Douglas, bladder, kidneys and get this. My left ovary was stuck to the wall of my stomach and they said it was like cement. They were trying to flush it for what felt like hours. I know I should be horrified by what they are showing me and telling me but I’m just so fucking happy that I’m not the crazy one, that what I was feeling all along was justified and having that answer, finally having that answer for why I felt so shit all the time was there. I had it.
I told my surgeon after an lengthy discussion about my uterus and what have you, that I had been fighting for I diagnosis since I was 14-16 She said in most cases it takes women 8-10 years to get a diagnosis. Wait a minute, back the fuck up… 8-10 years?! So women have to suffer this long before getting any sufficient treatment? How is that even legal? It baffled me. It still does.
So, in a nutshell, that’s my story. It was a lengthy fight, but doctors are slowly becoming more aware and more is being done to create awareness of this wretched invisible disease that effects 1 out of 10 women in Australia. Endo/PCOS sisters if something is wrong, seek answers. If your not happy seek a second opinion. I cannot stress enough how important you and your health are. Fight for your right to have answers and treatment for a better, healthier uterus. All the power to you warriors
— Michelle O, Bendigo.