Let’s Chat with Monique
by Monique Tait
Hello Everyone!
My name is Mon, I am 25 and live in the beautiful Western Australia with my husband and two doggies!
I got my first period towards the end of my first year in high school. I was almost 13 years old and for the first few years things were very normal. In 2012, around the age of 15 I started to experience some pelvic pain and was taken to my local emergency department where I was first told the pain was likely due to constipation and was sent home with a suppository. As a 15 year old I found this super daunting! My pain did not subside and I went back to the hospital the following day. It was then decided I had suspected appendicitis and I was admitted awaiting surgery. The following night I was wheeled into the operating theatre with no scans done prior and had my first laparoscopy. I woke up in recovery and once well enough I was taken back to my room where my mum called to tell me that as well as removing my appendix, multiple cysts on both ovaries were also removed. I had no follow up appointment post surgery and from that point things slowly started to go downhill.
Over the years I would experience pain, mostly in my lower left pelvic region. My periods started to become increasingly heavier (to the point I would sleep on towels) however they were 'regular' and I was always re-assured that everything I was experiencing was normal.
Fast forward to the beginning of 2015 when I started to develop ongoing digestive issues. I would frequently experience extremely painful episodes of upper abdominal pain, nausea, constipation. The only was I could describe it at the time was like my stomach was contracting tightening up, in extreme pain for a few minutes. Then relaxed and calmed down for a few minutes. These waves would hit out of nowhere and they were debilitating. Over the course of 11 months, I underwent testing, scans, iron infusions until I was eventually diagnosed with Coeliac Disease via pathology from an upper endoscopy. To be completely honest I had no idea what 'Coeliac Disease' even was! At first, I thought that meant I couldn't have dairy. I quickly learnt that Coeliac Disease and Dairy intolerance were to very different things however because of my Coeliac Disease I have since developed an intolerance to lactose which can be common for us Coeliacs. If you haven't heard of Coeliac Disease before either, let me explain. "Coeliac disease (pronounced SEE-lee-ak) is an autoimmune disease where the lining of the small intestine is damaged by tiny amounts of gluten (a protein found in grains such as wheat, rye, barley and oats). If you have coeliac disease, your immune system’s response to gluten causes damage to the small intestine when the tiny, finger-like projections lining the bowel, called villi, become inflamed and flattened. This is called villous atrophy and it reduces the available surface area of the bowel to absorb nutrients from food" (Healthdirect.gov.au). There is no cure for Coeliac Disease however those diagnosed must follow a strict, lifelong gluten free diet. I found this super daunting and with the help of a dietician it took me a few years to completely implement a gluten free diet. Adapting to a gluten free lifestyle really improved most of my symptoms however I continued to experience ongoing constipation and episodes of pelvic pain every now and again.
Now let’s take a little pause there and comeback to that part of my story soon.
It’s now December 2016. I was rehearsing for my annual dance concert when I rolled and injured my right ankle at the end of a ballet dance (en pointe). These types of injuries were not uncommon for me. So, I made an appointment with a physiotherapist for the following day to have my ankle treated and strapped so It was stable for me to participate in my dance concert. I got through the concert and went back to the physio where we commenced treatment for what we assumed at the time was a ligament injury and inflammation. Weeks were passing with no relief; I was going to physio twice a week and it was now at the point discussions were being had of seeing a sports medicine doctor for a cortisone injection so I could continue physiotherapy. I went to see this doctor and he also decided a cortisone injection was a good idea however I advocated for myself and requested an MRI scan to be done prior due to medical condition my younger sister has called avascular necrosis (AVN). Caused by lack of blood supply to the bone. This mainly affects both of her ankles and she has undergone two ankle fusions due to this disease before the age of 15. She also has juvenile idiopathic arthritis which she has basically has since she could walk. My MRI results came back and due to some 'red flags' It was then suspected that I too had arthritis, I started a short dosage of oral steroids, and I was referred to my sister's rheumatologist. A few weeks pass and my mum, sister, and I all head to the city (two hours from where we live) for our rheumatology appointment. We discussed my history, MRI results and a conclusion was made that I didn't have arthritis, but in fact Complex Regional Pain Syndrome (CRPS), A condition my younger sister also has. Complex Regional Pain Syndrome is a chronic pain condition It is caused due to abnormality in the central or peripheral nervous systems and inappropriate inflammatory responses. Swelling, joint stiffness, pain, and changes in skin colour and temperature are the main symptoms. There's no known cure for complex regional pain syndrome (CRPS). The 'red flags' from my MRI were very mild bone damage (in the exact same spot my sister experiences a lot of issues within her ankle). Had I proceeded with a cortisone injection without that MRI it could have been a recipe for disaster! Over the following years I continued regular physiotherapy and trialled many different medications to get my pain under control, this included seeing a pain specialist. Around 2019 I started seeing a naturopath to assist with my CRPS and now manage it without medications and with physiotherapy when needed with flare ups.
Around the time I started seeing my naturopath I started to develop severe cystic acne. Something I never experienced as a teenager or through puberty. My digestive symptoms were also flaring up. I was told my acne 'was not hormonal' but I just knew deep down it was. After many, many months of trying different supplements, creams, face washes, medications, you name it, I decided to seek the help of a dermatologist and started Accutane as a last resort to try and clear my skin prior to my wedding. I took this medication for 10 months and though it worked absolute wonders for my skin, but the side effects were no joke — dry skin, hair loss etc! Having such severe acne made me feel very self-conscious, however due to the severity and irritation I didn't wear any makeup to cover it and instead just had to embrace it until the Accutane had done its job.
My digestive symptoms continued and at the beginning of 2021 just days after returning home from what ended up being my final dance competition, they became worse. I trialed some medications for the symptoms, I underwent testing, and all came back clear. I was referred to a gastroenterologist and the day before my appointment in the city I presented to the emergency department with severe pelvic pain. I was barely offered any pain relief and sent home with an ultrasound referral. We travelled to the city for the gastro appointment, and I left with some new medications to try for reflux. We returned home and I went straight to get my ultrasound. During the scan, the sonographer explained that she couldn't see my ovaries and asked my consent for an internal ultrasound to get a clearer picture. The scan finished and the sonographer asked me if I knew what Endometriosis was, and she felt strongly that due to my presentation and previous history I likely had endometriosis. I walked out of the scan in tears. I immediately made an appointment with my regular GP to decide a plan going forward. Me being me was desperate for the results and had them sent to a local walk-in doctor as well. I went along only to be told by this doctor that he 'didn't think I had endometriosis and if I was that desperate for an answer, I could travel back to the city to get a different, more in depth scan done. But it was highly unlikely I had it'. I didn not agree and went to my normal GP as planned to where I was immediately referred to gynaecologist with a mention of a diagnostic laparoscopy and that this could be the cause of my digestive issues. I was able to get an appointment with them within a week and surgery was booked for December 2021. It was around this time I started my page @withendo_ which has become a safe place for me to share my experiences and connect with others on a similar journey.
The weeks following my gynaecologist appointment my pain and symptoms became aggressively worse. I was hospitalised three times within a month due to severe constipation (faecal impaction), extremely heavy bleeding and severe pelvic pain. I began taking the pill for the first time in my life just to get me through until surgery, which I have since stopped taking. My surgery date was brought forwards to the end of September 2021, and I had another upper endoscopy and colonoscopy procedure two weeks prior where I had a polyp removed, haemorrhoids treated and was told I also had chronic gastritis. My surgery day came around and I was extremely nervous, but optimistic at the thought of finally having an answer.
I woke from my 45-minute diagnostic laparoscopy to be told I was diagnosed with endometriosis, and removed from my uterosacral ligament, pouch of Douglas and bladder. All endometriosis was removed except some on my bladder that was 'too risky to remove due to risk of injury'. Much to my surprise my ovaries and bowels were clear. Following surgery, I haven't had much relief from my pain, symptoms and my bladder symptoms have been exacerbated due to what I believe to be the endometriosis left on my bladder. I am currently in the process of seeking additional medical advice for this and stuck in the unknown of what my journey looks like going forwards. This experience has been rough, but I am so lucky to have the support of my friends, family and amazing husband who has held my hand through every step of this journey.
If you are reading this and currently feeling alone or unclear of the path ahead my biggest advice would be to surround yourself with a supportive community to lean on. Build a medical team you trust and don't be afraid to seek a second opinion if something doesn't feel right, you know your body best!
Thank you for reading my story, I hope it has been helpful to you in some way.
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