Tiffany's Journey to Diagnosis
By Tiffany Bright
September is PCOS Awareness Month, and at QENDO we’re sharing stories from the incredible people in our community who live with this often overlooked condition - 1 in 10 are effected by PCOS. Tiffany Bright shares her journey to diagnosis with both PCOS and endometriosis, giving a name to the symptoms that she always assumed were normal, until she had a conversation with a workmate (and QENDO volunteer!) who shared their story and offered support.
Hello, I’m Tiffany and I have newly been diagnosed with polycystic ovarian syndrome and endometriosis. This is my Journey to Diagnosis.
So let’s go way back to 2008 when it all started. First period arrived on my thirteenth birthday, what an awesome gift, becoming a women. Don’t get me wrong, I was pretty excited to know that my body was finally doing what it needed to. Unfortunately it did come with a few hiccups over the years.
First was the cramping. They would sometimes ease and I could just go on with my day like I didn’t even have a period and then other days I felt like my uterus was creating a knot inside me. I would bend over in pain and I felt like I couldn’t even get out of bed, let alone even have the energy to go to school. Then was the bleeding, I’m not going to lie some days were gross. I would always leak through a pad at school, so I always took an extra skirt or pair of shorts with me in case. I would have to change a pad around every 1-2 hours, which gets hard when you’re at school, so I started to get paranoid and always would have a jumper tied around my waist even in summer time. I also had a problem with large clots, some days I would have up to 6 throughout the day, around a 20-50 cent sized. Then other days I would have a handful at once, those days were the most painful.
So all this continued until I was about 19/20, until my periods started to become irregular, coming perhaps every 3-4 months and sometimes longer in between. Back then I thought it was the best thing to ever happen, to not get a period, and I would have another month pain free. If only I knew what I know now, I would have jumped on the chance to get it sorted.
2018 came around and I got a new job (keep with me, it plays a huge part in my journey). It was a fantastic little family owned business, with amazing people. I still continued to have problems with my periods and pain and always irregular. There was this lovely lady that I got to work with, who has endo (endometriosis) and PCOS (polycystic ovarian syndrome) and I had never heard of either one of those conditions at that time. I thought what I was going through was completely normal and that every other woman went through the same thing. But oh boy was I wrong!
So I started talking to this lady about PCOS and she started telling me the different symptoms and how it affects your body with irregular periods and so much more. I was blown away by what she had to say that day, I felt like I ticked a lot of boxes for PCOS. I was terrified of talking to doctors about my period and what was going on with my body, I was also scared of being sent to a gynaecologist. So one day the pain just got too much for me to handle and I went and saw my GP. She asked me all these questions about my periods, how often I have them, do I bleed a lot and if I get blood clots and the size. So after explaining pretty much most of my history to her about it all and my many symptoms, she asked me to go get some blood tests and ultrasounds done. I still remember the words coming out of her mouth, “Now be aware they will most likely want to do an internal ultrasound.” Now I felt like I was going to be sick, I was terrified, someone looking at down there and sticking something inside me? No thanks.
I can say it wasn’t as bad as I thought it was going to be, the only thing was that my period started that same day I had to have the ultrasound. They still did it and I was watching up one the screen when she did the internal ultrasound, she started to count the follicles on my ovaries and I remember when she started to get to double digits I was like: okay, so maybe something is going on. It was all over within about 20 minutes including the abdominal ultrasound. A few days passed and I got a call from my GP to come in and get the results, she said that I have to meet 2 out of the 3 criteria to be diagnosed with PCOS. Thus came the time to go see a specialist.
When the day came for my appointment with the new specialist on August 11 2019, she went through and explained what the ultrasound found, and what my hormone levels were doing. Once again I felt that sickening feel of waiting for those words: “Tiffany, you meet the criteria for PCOS and so I am confident to say that you have PCOS”. I was shocked, I took a deep breath once I left the specialist office. I did cry afterwards, it was a huge thing to be told pretty much all through my teenage years what I went through wasn’t normal. So I jumped on social media and found different groups for PCOS. I was blown away by how many other women had the same illness.
The lovely lady I work with took some time out of her morning, to come along to my new gynaecologist. I was a little nervous as he’s a male, He was and is really lovely, we spoke about my PCOS diagnoses and also some family history. My mum was adopted so I had no history from her side, but my dad’s side seems to be where I got it from. So as we talked about it he said “I think there might be more going on, especially with such a big family history, so we can book you in for surgery and see if we can find endometriosis”.
I had 2 weeks to think about if I wanted surgery or not. I was so lucky at the time, and still am to have someone who had been there and done that already, so we sat down a couple times between that two weeks and spoke about it and why it would be beneficial for me to have the surgery. I was scared, as much as I had so much support around me. So I made the decision to have the surgery, but as I write this and look back I am so glad I did. I was booked in for July 2nd 2020.
July came around super quick, the lady from work sent me a QENDO pre-surgery list and things to bring to hospital with me, which made it easier to pack my overnight bag as I was so full of emotion before the surgery day. Without it I would have forgotten half the things to bring with me! Surgery day arrived and I was more anxious about it than scared, just not knowing what he would find. What if he finds nothing? I asked myself. There were so many different things running through my head.
My specialist came and saw me about 4:30 pm that afternoon and said “it all went well and that he had found endometriosis, it’s only a small amount but it is there”. Amount of disease is not correlated with amount of pain, so even a small amount of endometriosis can cause a lot of symptoms. To know that the pain that I had felt over the years and the horrid bleeding wasn’t just in my head, and now to know that none of it was normal - it was a mix of emotions. It took about a week for my diagnoses to really hit me, start crying about it, and then asking all those questions, like: will I be able to have kids?. So many new questions came to mind.
In August 2020, one whole year on from my first diagnoses, it’s been tough. Some days are easy and I can breeze through without a problem. Other days can be a challenge, and one thing that I have worked out from my journey is that those challenging days are okay to have. My mum always told me that “Some days are diamonds and other days are stones” and it’s so true, John Denver had it right.
So now I’m onto my next challenge and that is babies. I am hoping that surgery has created more of a chance for me and my partner to be able to have kids, but we have 3-6 months. If nothing happens naturally, I have to see my gynae again and discuss where our next avenue is for having children. We are going to focus on taking it one month at a time and just hope my body wants to co-operate with me. I wish I had spoken up sooner instead of thinking it was “normal” to be in so much pain. Although I’m 26 now and only finding out about the conditions, I am still one of the lucky ones to have such a quick diagnosis and to be able to be helped through a tough journey ahead.
Just remember you are not alone 1 in 10 women are affected by PCOS, and 1 in 9 by Endometriosis. Just because it’s not physically seen by others, doesn’t mean it doesn’t exist. QENDO is an awesome site for information, don’t be afraid to ask for help and don’t be afraid to talk to your doctor. It is going to be a mental and physical battle but together we can stand strong. You’ve got this!
Are you looking for support and resources to help manage your endo, adeno, PCOS or infertility? We’ve got you. Our QENDO Members Space is a free resource where you can find referral lists of multidisciplinary practitioners near you, a video library of education events with clinical leaders in gynaecology and reproductive health, exercise and movement guides, and exclusive offers for services designed just for you!
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