Let’s Chat with Jahanna
by Jahanna Katt
Growing Up with the Invisible
Let’s start with the awkward introductions shall we. I’ll go first. My name is Jahanna, I am 22 years old, I am a Radiographer, and I live with Endometriosis, Adenomyosis and Pelvic Congestion Syndrome.
Alright so from the beginning. The night before my 12th birthday. And my period arrives. Woo hoo womanhood, what a way to make an entrance. Fortunately for me my first period was great. No cramps, light bleeding, and it only lasted 5 days. And that’s where the luxury ended. My cycle turned into being 21 days apart, bleeding for at least 10 days, and me wearing large overnight pads all day, every day, that needed to be changed every hour. I also started to experience unpredictable bowel habits and bladder pain. Mum told me that this might be my normal and unfortunately I must have inherited the bad period genes from her side of the family. She didn’t know any better at the time, and neither did I.
Fast forward a year, I am now 13, and after coming back from an overseas holiday I just felt sick all the time. I mean ALL the time. I stopped eating a lot of food, and only really ate when my parents forced me to. I stopped going to school and soon spent most of my days in bed. Countless doctor's appointments, scans and tests later, I became severely unwell which landed me a stay in hospital. No one could find anything wrong with me. One exploratory surgery later and my normal appendix being removed “just to be safe”, an ovarian cyst was found to be burst, causing fluid to be floating around in my pelvis. This surgery was however performed by a general surgeon not a gynaecologist, so endometriosis was not investigated at the time. When leaving the hospital, the surgeon put me on the pill to prevent further cysts. I didn’t know any better at the time.
Over the next few years my health continued to deteriorate. Constantly feeling nauseous, pain gradually getting worse, my periods getting heavier. I went and saw a gynaecologist, who suggested I try a different pill. Then a different pill, and then another pill. Surprise surprise, these did nothing. This is when the doctor's answers to my symptoms started to change.
Most questions asked by the doctors included ‘Do you feel alone?’, ‘Do you feel like you need attention?’ They started thinking it was all my head. That I was making it all up. Because I was a teenager and sometimes teenagers do this to get attention...
One memory I will never forget about being in high school is asking the teachers during class to go to the bathroom when I had my period. Most of them would always say no. They said surely you can hold on for an hour of class. Little did they know that my period was so heavy that as soon as class finished, I had to literally run to the bathroom, making it just in time before my school pants were soaked in blood. Oh and let's not forget about the pain. The pain of thinking someone is ripping barbed wire throughout my abdomen, so bad that my legs went numb and unable to move. Still think this is normal or I’m just making it up?
After missing a lot of high school, then came university. Where the real fun in my story begins. Suddenly my pill that wasn’t working fantastically anyway, completely stopped working. I started bleeding every 2 weeks and knew this can’t just be my normal. So off I sort to seek a second opinion.
At my new gynaecologist after telling her my entire story, the first thing she said to me was, ‘Have you heard of Endometriosis?’ All I knew of Endo was that my Aunty had it, but I didn’t know what it was or what it did. She proceeded to explain to me what Endo was and suddenly, everything clicked. All of the symptoms and all of the years. For the first time I felt hope. Hope to finally live a normal life. That next week in 2019 I was in for a laparoscopy, and even before going under I was still second guessing myself and thinking they wouldn’t find anything. This is what years of medical trauma does to you.
It was during this surgery that I finally got my diagnosis of Endometriosis, 7 almost 8 years after my symptoms first started at age 19. The relief was astounding. However, this was short lived. When I soon realised there is no cure for Endo. It can grow back. And much to my disappointment I also found out my surgery had been performed with ablation not excision. Yay, lucky me.
After surgery my symptoms continued to get worse and worse. I was bleeding every day. Every single day. This is when I decided to seek out an Endo Specialist. I was so nervous. Nervous for what my future held. However she was so lovely! She immediately started me on high doses of hormones to stop my bleeding, which it did after having a period for a year. I was also sent for another ultrasound, which showed some abnormalities. In particular, the veins in my pelvis were very large, almost 5 times the size they were supposed to be. This led me to another diagnosis, Pelvic Congestion Syndrome. Surprisingly even with another diagnosis under my belt, it wasn’t a shock to me. All the symptoms fit, and I think I was just so used to getting given bad news with anything to do with my body.
Unfortunately after a couple of months I had to reduce the high doses of hormonal medication as this was just a temporary fix. For course this brought back the heavy constant bleeding and the pain only continued to get worse. My specialist then tells me ‘This is just something you may just have to deal with’. I was so angry. This is what the doctors over the many years had always told me before I was diagnosed with Endo. I was not going to do this again. So yet again, I was back to square one researching a new Endo specialist.
After a couple of months, I found another specialist. Going to that first appointment was so nerve-racking. What if he was just going to be like all the other doctors, telling me what I'm going through is just my normal? However, this was not the case. He is still my current specialist to this day and he is wonderful. My initial consultation ended up taking 1 hour and 30mins, 3 times the length a normal appointment should go for because of my extensive medical history, him actually sitting there and listening to everything I had to say, and him formulating a plan for me going forward. I walked out of that appointment with everything I needed. A few months later in 2020 I ended up having an extensive laparoscopy and hysteroscopy with this specialist. Significant endometriosis was found which was not surprising, my extensive pelvic congestion with additional Nutcracker syndrome was shown (to the point where one of my ovarian veins was the size of his thumb!!), and I also received another new diagnosis of moderately diffuse adenomyosis. Waking up out of that surgery was such a relief, there really was causes for my crazy ongoing symptoms and it wasn’t all in my head. Months following that surgery was really rough. Even though the surgery is keyhole, so much is work is done internally and recovery really does take a long time.
There is so much more to my story that I haven’t shared. I have only just touched the surface, like so many of you. If I told you everything, we would be here writing a novel. For some it's probably a bit overwhelming to read, but please just know that I am doing ok. I am a pretty positive person, and I do believe there is hope in my future. What I would love from you all is to walk away knowing that if you or someone you know is experiencing anything abnormal, please seek help. Whether that be painful periods, heavy periods, irregular periods, ANYTHING. Trust your gut feeling that something isn’t right. Don’t stop until you get answers. Help them seek the help they deserve until they are heard.
(With Endo awareness month happening now, I am hoping to start my own Instagram page to share more of my day-to-day story and raise some more awareness to these conditions. It is called @_crampingmystyle_ if you would like to give it a follow. )
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