The silver lining of my Endometriosis story… By Maddy Forster
The silver lining of my Endometriosis story…
If you suffer from Endometriosis or know someone who is, this is a story of my journey and how I’ve used my experience to my power and built a business.
I remember it was clear as day, hearing the words from my third surgeon after my fourth laparoscopy ‘it was far worse than I anticipated, I am diagnosing you with Stage 4 Endometriosis’. A bittersweet feeling really, finally some relief and validation for the dismissal from doctors I’d had in the previous years but at the same time, a million thoughts rushing through my mind because this was real and there was NOTHING I could do about it.
Let’s go back a few years… rewinding to 2010. Little Maddy in Year 7 at a Catholic Girls college in Melbourne. I was always passionate about going to school, tried to make good friends and I was convinced I wanted to be a primary school teacher growing up. One morning in mid-November 2010 I woke up unable to move my right hand, a week or so after fighting a viral ear infection. I ran straight to mum seeking her guidance as I tried to brush my hair for school but the functionality of my hand had stopped working. We went straight to the doctors for an x-ray where mum expressed her concerns that with a family history of Rheumatoid Arthritis, she was worried I was following the same path. Similarly, with my experience of doctors nowadays, the GP literally laughed in my face and said, “it’s impossible this could be arthritis, let’s do a scan and put a brace on, it’ll clear in a week or so” So as you do, you follow the guidance of the medical professionals and do as they say. A week later, I was no better. This went on, seeing different doctors for advice for a couple of weeks before enough was enough. We decided to see a sports doctor in the CBD who looked at my hands and sent me for a blood test immediately, which confirmed I had Juvenile Rheumatoid Arthritis. As a 12-year-old with her whole life ahead of her, this was very confronting to hear and I remember saying to mum, “but isn’t arthritis for old people?”.
My life has never been the same since that diagnosis. For 10 years I was treated with a low-dose chemotherapy drug to treat my peripheral inflamed joints. Nowadays I inject myself once a month with a biological medicine to treat my sacroiliac joints as they are the most inflamed joint causing me pain. The reason this is relevant to my endometriosis journey is because I have been dealing and managing my health struggles for 13 years. I don’t remember what life was like before 12. My high school years were tough, I was bullied for being different and found myself being forced out of friendship groups because I missed so much school. Throughout years 9-11 I had teachers coming home to help me when I missed longer periods of school, especially during the winter months due to my very low immune system.
Growing up at an all-girls school we knew what periods were and a lot of my friends already had theirs. I was later than anticipated with my mum being an early bloomer, but I was in Monash Emergency Department waiting to be admitted one day for pain management when I went to the bathroom and got my first period. It was such a relief considering the medication I was on.
My periods were normal for the first 3 years. Regular, and if anything, a bit heavier than usual. Coming into year 12 I started experiencing pain around each period which was worsening each month. It got to the point where I went to my local GP for some guidance and was immediately prescribed the contraceptive pill with no second thought. Again, I trusted my medical professional’s advice. It got me through my VCE and aside from gaining a lot of weight I didn’t really have many side effects. 2016 came around and I started spotting at the near 12-month marker of being on the pill, so we changed it up and tried another. This cycle repeated itself twice again. Fast forward to February 2018 and I was experiencing really bad pain again, so I requested to go and see a gynaecologist for further review. This specialist was a general gynaecologist which at the time was all I needed. I went through the stages of ultrasounds, blood tests and beyond to try and determine whether anything was wrong internally. A couple of cysts appeared but nothing sinister was seen, however we concluded based on my symptoms to go and have a laparoscopy to investigate further due to my symptoms.
I had a Mirena inserted and decided to stop the pill because it was causing me hormonal acne and doing more harm than good to my body. I had to be on contraception due to the medications potentially causing deformities if I were to fall pregnant.
I had two laparoscopies with this surgeon in two years and both times I was told “there was a tiny bit of endometriosis, but your tubes are clear and there are a couple of cysts but nothing to worry about. I’ve put the Mirena in and you’re now good to go”. My second laparoscopy in 2019 I was sent home 3 hours after waking up and was back in ED just 5 hours later due to the excruciating pain.
My experience with my first gynaecologist was terrible. She was inexperienced and not providing me with correct advice or management for my symptoms. In 2020 COVID started and the whole world changed. This time I called that same doctor saying my pain was back and I was told to “just take panadiene forte and it will go away”. Even though I knew my body and this pain was exactly the same I was feeling only 10 months prior. I decided to present in an emergency department and start seeing a new gynaecologist who has a very good reputation in Melbourne. I felt safe and comfortable that surely, she would be able to fix whatever is going on. Due to the extent of the way the world was, for me to have my third surgery I was required to have a colonoscopy, MRI, CT scan and multiple bloods to prove this pain wasn’t coming from anywhere else other than my reproductive system. It turns out my inflammation markers were extremely high, and I was diagnosed with rheumatoid arthritis in my back for the first time, but that wasn’t the cause of this pain. So, when I went and had my third laparoscopy after being alone in hospital for 8 days due to no visitors, it was a horrible time. I woke up to my first ever ‘official’ diagnosis of Stage 3 Endometriosis. I couldn’t believe I had an answer (even though I later found out it wasn’t correct) but it was something. I had the Mirena taken out because I thought maybe it was causing further complications, and I was recommended that voluntary menopause would be a great option going forward. I was only 22. This petrified me and I decided against it, with the only other option given to me to go back on the contraceptive pill and try again.
The pill has been one of the most detrimental medications I have ever taken. It completely ruined my gut biome and for me personally, it GAVE me acne! In 2021, I was working in a PR agency after finishing my Bachelor’s Degree in Communications and surprise surprise my pain was back with avengeance, only 10 months later. By this point I tried to convince myself it was all in my head because how could it be coming back so quickly? I decided to investigate alternative eastern medical routes and stumbled across my now Acupuncturist who has changed my life. She has educated me in so many more things than just my reproductive health, but also helped me see one of the leading endometriosis surgeons in Victoria. He operated on me in May 2021, after sitting in his office in tears begging for him to take the pain away because I just couldn’t keep going the way I was.
I woke up from that surgery, 3 hours later to the official diagnosis of Stage 4 Endometriosis. My left ovary was completely adhered to my pelvic wall which was also then attached to my bowel. My Pouch of Douglas was full of disease and there was so much scar tissue that he was surprised I even lasted the 10 months. How could each operation be so different, but all be so wrong at the same time? How are there doctors out there performing surgeries that are too far out of their skill set but still do it anyway? I didn’t even know I was having ablation, not excision! I felt so betrayed, hurt and I lost a lot of faith in the medical profession.
The fear in the back of my mind through all these surgeries has been “will I be able to have children?”. The one dream I have had since a little girl is to be a mother one day. This still stands today; I want to carry my own baby and have children in the future. As a preventative measure, I undertook 3 egg freeze harvests to have as a backup if I ever need it. My most recent cycle nearly 12 months ago has caused significant trouble to my body. My ovaries are now borderline polycystic, and I am experiencing an average 4-5cm cyst on a different ovary every 3 months. I never had problems with cysts before my last cycle! Another kick in the guts.
After my latest egg harvest, I was booked in for my fifth laparoscopy after my pain and symptoms returned during my week with COVID-19. My body has never been the same since testing positive. Post-harvest my surgeon said, “your ovaries were the size of melons, you had chocolate cysts everywhere, your urethra has scar tissue all attached so you are lucky the previous surgeons didn’t cause you to have a permanent catheter”.
This was a breaking point for me.
I recovered well from surgery last year, however in November I started getting an array of new endo symptoms I’d never had before. Still today, I am suffering from chronic pelvic pain, back pain, and leg pain… daily. It’s exhausting. I am seeing a new surgeon who can assist me in a holistic view rather than just surgery. We are aiming to manage my disease without opting for surgery as it will cause further damage for my fertility and general wellbeing. It’s hard. Some days I feel surgery genuinely is the easiest option for me because I know it gives me around 9-10 months relief. I am currently looking into Pelvic Botox as a treatment option as well.
Endometriosis has restricted me from working full time. I’ve tried three different jobs and have ended up ill in hospital each time. I felt like a failure, a disappointment and guilty that I wasn’t going to one day be able to provide for my family. In September 2022 I was well enough post-surgery to travel to Italy and had a life changing experience, I discovered a new purpose and dream. I enrolled in the Australian Style Institute Personal Styling course to take control over an aspect of my life that I refused to continue to let my health take over. I decided to find a career in which I could work for myself, to support my future, my partner, my family and hopefully one day my own children. Since then, I have started my own Personal Styling business – Mad About Fashion (@_madaboutfashion). I want to give women with or without chronic illness a reason to look in the mirror every morning and feel motivated to find their purpose like I’ve found mine. At the age of 25, I have never felt this driven in my entire life… It's all because I am creating a career that works around my health and my life and not the other way around. Chronic Illness is not supported enough in the workplace and there is a huge gap in an employer’s understanding about women like me.
Mad About Fashion, Styling made Simple aims to give the power back to women who may not have control over many aspects of their life. I want to show people that there are ways to dress despite their illness, occupation, financial status, or body shape. Mad About Fashion has given me another lease on life and will enable me to fill my cup by helping others, plus it’s another reason to keep fighting. Fashion has always been a big part of my life and I’m so proud and excited to be able to be a business owner.
Mad About Fashion is currently working on a website that is soon to be launched but for now you can find my details on Instagram on @_madaboutfashion.
Never give up! Ride the wave of the bad days but make those good days even better.