Let’s Chat with Tiff
By Tiff Calam
Hi, my name is Tiffany and I've been suffering from severe endometriosis for all my life.
I remember getting my first period when I was 9! It felt strange and weird. None of my friends had a period or even knew what a period was. By the time I was 13 some of my friends started getting their periods meanwhile, I was going down the oral contraceptive route to help balance my heavy periods out. This often left me feeling quite isolated and I struggled to make friendships due to feeling left out or feeling like I wasn't “normal”. When I was 16 I was put on a stronger contraception due to the current pill not being able to settle my painful periods. By this point a lot of my friends were going out to parties and doing everything a normal 16-year-old should be doing however I was spending my weekends with my mum going to the doctors to try and get some answers or even bedridden due to the cramps and the nausea. After getting no answers I just thought this might be normal and maybe no one else wants to talk about their periods hence why everyone keeps saying their’s isn't painful? So I just got on with life as much as I could.
I think I managed my pain and periods for 3 years until enough was enough! By this point, I was 19! I saw another GP, a female one. I spoke to her about what I was going through and she referred me to a private gynaecologist. I remember saving up all I could to see this gynaecologist to be dismissed again and told this was normal and that as I aged it would get better and easier…. The disappointment I felt was heartbreaking, I started feeling crazy and again very isolated which took a turn on my mental health at the age of 19!
By the time I was 20, I took matters into my own hands. I started studying nursing, not to help people but to learn more about the human body, especially the women's reproductive system! I figured if the doctors won't help me, I'm going to help myself and figure it out myself. I didn't believe this was normal because my sister's periods were nothing like this, especially my mum's and all my friends! I turned 21, I was a second-year nursing student on my first hospital placement. I got my period on my first week of placement and I remember absolutely pushing my body to the max and just doubling up on pronstan and Panadol to get through the day. The nurse I was paired with had asked if I was ok and I broke down in tears and told her what was going on. The nurse asked if I had ever heard about endometriosis before. Now this was the first time I've ever heard the word endometriosis, she mentioned she has stage 4 endometriosis and explained to me the symptoms and what it is etc. I remember going home that afternoon and researching the hell out of endometriosis. I thought to myself OMG!!! I think this might be my issue! As I finished up my last year as a nursing student I focused a lot of time on endometriosis and women's health. I started writing a journal of my symptoms and when they occurred, what triggers the pain etc, I continued to research what helps with endometriosis and tried to change my diet around and went on another oral contraceptive pill that again was stronger, I was advised to stop my periods all together! I turned 23, and moved down to the Gold Coast to get into gynecology nursing! The pill wasn't helping with the pain. My sick leave started to increase! I was fired from 2 jobs due to the increase in sick leave which was a shock because I thought working in health, there would be a better understanding and more support which I was wrong! By this point, I felt defeated again! I left my friends and family behind to move for a better future but it didn't feel better. I googled a GP nearby on the Gold Coast (who to this day is still my GP) I remember walking into her office with my journal and tears in my eyes asking for help! I told her what was going on how I've been managing what other doctors and specialists have been saying, what I've researched etc! AND FINALLY, I GOT HELP!! The GP mentioned endometriosis and PCOS. This is the first time a Dr has mentioned those words to me! I felt relieved, she sent off an urgent referral to the hospital and we did ultrasounds, I was finally given some pain relief to help with the pain and we did numerous blood tests! I was seen by a Gynae within 3 months and surgery was booked for another 3 months! I thought to myself OMG ITS NOT IN MY HEAD, I'M NOT CRAZY!!!. 2 months passed and I was at work looking after a patient and I got this sharp pain in my right side and it was associated with nausea and vomiting. I thought oh god my appendix!! I was rushed to ED where they found a 15cm ovarian cyst that had twisted therefore I needed an emergency surgery! I had mentioned I was awaiting a lap for endometriosis and the gynae said they would go in and have a look when removing the cyst. Anyway, I had my surgery I woke up and asked the nurse if they found any endometriosis and the nurse said sorry no. You can just imagine the devastation on my face and the heartbreak!! I went to my post-op appointment at the hospital demanding answers! A different gynae attended to me and she said no endo was found but they took no pictures or any biopsys. I expressed my concerns and she listened and understood. She said “I've looked at your folder and it's impossible that this isn't endometriosis” She got the head Dr of the gynae department involved and we decided to do another lap 8 months apart, at this point, I was 24! The day came for my 2nd lap I woke up and remembered asking the nurse “Please tell me they found endometriosis” The nurse said she would get the doctor. The doctor came and said Tiffany we have found stage 4 endometriosis today and we have done an ablation to burn away the endometriosis tissue! I BALLED MY EYES OUT!!!! I have been fighting all my life for answers and I finally have my answers! It was a relief to know I wasn't crazy, a huge weight was lifted off my shoulders that day! Unfortunately, I'm now 28 and have had a total of 4 endometriosis surgeries. I have also been diagnosed with PCOS in the meantime! Because it's taken so long for me to be diagnosed with endometriosis and how many surgeries I've had, my fertility has been affected! I don't know if I will ever be able to have a baby or have the joy of going through that process naturally. My bladder and internal reproductive organs have been affected which is again heartbreaking! Living with an incurable illness you never feel like you can get ahead in life especially when it comes to your finances. I've spent more than a house deposit on surgeries, allied health appointments, contraception and more. However, as much as the negatives keep on coming I no longer feel isolated and alone! I've come across numerous women since being diagnosed who can relate to me and have similar stories and are open about sharing their stories! I've lost myself but have then also found myself in a different environment and community! When I look back at everything I've gone through it makes me so proud to see where I am now! It took time but I'm here, still advocating for myself and other women! I now work in an environment that supports my sick days, understands them, respects me and respects that this isn't my fault and I'm doing everything I can do to help myself and my quality of life with now stage 3 endometriosis! My only advice to women who are going through what I did is to keep fighting, even on the hard days! Keep advocating for yourself! The hard days are temporary! It will get easier and my story shows that!
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