"Value Your Worthiness, Gather Your Strength": Brooke's Endometriosis Story
By Brooke Smith
Brooke Smith, 37, has had a long and complicated journey with pelvic pain, endometriosis, and now, adenomyosis. In this blog she shares her extensive journey and the medical professionals that have guided her along the way, taking us through the highs and lows so many of us with endometriosis have come to know intimately. From 14 to 37, Brooke has continued to stay positive in the wake of extensive and severe endometriosis, using her experiences to help others and our QENDO community. This post deals with infertility and IVF and may be sensitive for some readers.
I would to love share my journey story with you. I am aged 37 and I currently reside in sunny Hervey Bay. I moved interstate from Victoria to QLD in 2018 for work. I work as a digital creative in local government Media.I was involved with Endo Help and Gillian Walker together with Mabel Mitchel and nurse Bev King were heading a team of nurses to get funding for a pilot program for (ECN) Endo Care Nurses on the Mornington Peninsula (VIC) and I helped with the proposal design and case studies. I am still in touch with the girls as they continue their amazing work in awareness and support.
To give you some background about myself, I grew up and spent most of my life on the Mornington Peninsula, Victoria.
I have suffered from pain, inflammation and monthly period issues since the age of 14. Mum would have to come and literally pick me up off the floor under a table in the classroom or from the school nurse’s bay quite regularly. I recall the time when the school principal thought I was being a hypochondriac and she was very frustrated with me. I don’t blame either of them as I can see now how they were not to know about the true nature of my underlying illness.
I was put on the pill under mum’s permission and GP instruction at 16 years old, and I never came off OCP until I was married at 28 yrs old. I wanted to try for a baby with my now ex husband at the time. My body went into chaos off the pill. I never succeeded conceiving naturally and even saw a IVF specialist at Monash in 2012 with my ex husband. I never had the opportunity to proceed as the marriage ended.
Mid 2012, I had diagnostic Laparoscopic surgery at Peninsula Health after an emergency haemorrhage landed me at the ED. They also performed an appendectomy as I had lost my appendix from the endo wrapped around it. I eventually recovered from that health scare, but the Endo came back with vengeance during the next 5 years.
Late 2016 - I had a pelvic internal ultrasound with Dr Sophie Piessens at Monash Health to look at my bowels and it showed up on the screen as she broke the news to me. I remember her calling in the head Dr at the time to confirm what was seen at ultrasound. She was very lovely and calming and talked me through the whole scan which actually really helped take my mind off the pain when she pushed down on each ovary. I was living with a very poor quality of life and had recently been made redundant at my place of work. I had made plans to travel internationally. I was able to travel and have one of the best times of my life in between endo flares.
Late April 2017 - I had endometriosis excision surgery and a partial bowel resection. It was conducted by Dr Catarina Ang from Royal Women’s together Dr Peter Carne bowel surgeon specialist from Cabrini Health. I paid for this privately and the surgery was conducted at Cabrini Hospital in Malvern using my private health insurance. The wait with Monash Health (public) was too long and I became very physically and mentally unwell. It was my decision to go and pay privately to be treated, which is something a lot of people with endometriosis have to compromise. I had an endo nodule breaching the bowel wall and my reproductive organs were not mobile so they removed lots of adhesions.
I saw a Pelvic Pain Physio for 7 months after this particular surgery and I was on a hormone suppressant medication called Synarel prior to, during and post surgery for 7 months together with OCP. I like to imagine I’m one of the lucky ones who didn’t end up with a colostomy bag. Eventually, I was able to return to part time work and freelance work at home. I was unsuccessful in conceiving naturally with my current partner after coming off the OCP.
2018-2020 - In my new life in Hervey Bay, things were looking up. I built a new home together with my fiancé Jamie (my rock) we are very lucky to live in this beautiful part of the world together with my stepson Nathan. I still had fertility issues so we sought help from a specialist Dr Micheal Wynn Williams in Brisbane who was originally recommended to me by Dr Catarina Ang as she knew how complicated and advanced my endo was. We drove to Brisbane for what I thought would be a straight forward process into the next chapter of my journey.
On physical examination he felt endo present in the recto vaginal area. He considered my medical history and scan / blood tests and recommended to proceed to IVF asap or have another laparoscopy to clear things up again. SO I knew eventually I would need surgery. He also noted that it might be quite complicated for me in my condition and to seek a gynaecologist closer to home who could help manage IVF plan if possible. Michael has since moved to NZ to practise and live.
We consulted with specialist Dr Dana Moisuc who was very helpful and understanding of my condition. She is based in Sunny Coast but visited Fraser Coast on a weekly-fortnightly basis to consult. She was concerned about my condition moving forward into IVF but I was determined to start a family of my own asap and I persisted to work with her on my fertility. Earlier this year (before COVID) I was due for my first IVF round at Queensland Fertility Group and I was being overseen by Dr Dana on all aspects on the first round together with QFG lab. Understandably, sadly this all went on hold until QLD could resume IVF services safely during COVID. “Just another set back" i told myself.
One month or two later, I got the call from QFG that we were safe to resume and commence my first round but with strict protocols and rules. I knew this was going to be tough as I would be required to attend most of my appts and procedures alone. My determination drove me and we booked it all in. It was certainly a lesson in patience (which you’d think id run out of by now).
During my cycle the hormone injections stage was a rollercoaster. We ended up having a successful egg collection of 10, however only 3 embryos made it and only 1 A grade embryo made it to day5 blastocyst stage. There was concern raised for the quality of my eggs. We implanted our ‘one’ little bean but unfortunately it was not successful. They couldn’t really tell me much about why the quality was poor and I/we decided that we should get a second opinion and to explore the potential cause of my poor egg quality before rushing into another round of IVF.
I have a friendship connection who recommended City Fertility in Brisbane to us as they can help with more complicated and custom IVF and fertility issues. I chose to consult with Dr Andy Stamatiou who spent over 1.5 hours with me on a phone consult asking many questions that were more in depth and asked for to forward my entire medical history over to his office. He asked me to have fresh blood tests, MRI and ultrasound done. I had another follow up appt with him via phone.
My results revealed that I have 5 endometriomas over both ovaries and the MRI showed signs of adenomyosis. I was taken back by this but also not surprised that this was the case. My periods were getting much heavier and more painful and some days I could not get my pain under control for hours at a time. In particular, under my right side rib cage area. He recommended surgery as my priority to remove and salvage what we could asap.
Monday 26 October - I had a planned excision surgery at Brisbane Private. I also had cystoscopy and a zoladex implant inserted to help treat the adenomyosis symptoms. I was visited by Dr Andy on my second recovery day in hospital (last Tuesday morning), which I really appreciated as I was less groggy from the anaesthetic and more coherent.
He removed some of the endometriomas in my ovaries that were visible and excised any other endo sites, but then by chance he discovered endo nodule restricting my ureter between my kidney and bladder. I was and still am in total shock when he said we got there just in time. I had absolutely no idea that endo could do that.
I am planning to return to work next week if I’m well enough. Lots of healing to do.
My fiancé and my family in Hervey Bay (and my interstate family in Vic) are very supportive and they have been there right beside me. I feel very lucky to have such amazing people in my life. In the back of my mind, I know it will be back soon and in the meantime, I’m trying to better understand my disease and how I can improve quality of life. I really hope I can get another chance to try IVF next year, I will remain positive and hopeful.
I would like to help others if I can, so It’s important to me to be able to become more aware and knowledgeable about this chronic illness.
If you are reading this story right now and suffering from the effects of endometriosis, adenomyosis or a similar chronic condition I want you to know that I hear you, I see you and I believe you. For every time you cry into the shower water, trash your favourite linen, burn yourself on the heat pack, scream into the pillow, bend over in agony, sit in your car in your lunch break to hide the tears, feel like you are failing, pray that aunt flo doesn’t come, impatiently pee on many a negative pregnancy test only to stare into the mirror begging yourself to not give up, chanting under your breath “make it stop.” Please don’t give up!
Value your worthiness, gather your strength and invest everything you have to your fight. You are SO worth it and no one really knows just how strong you really are, except YOU. Support on all levels is essential if not vital throughout your endo journey as I know all too well that it feels like a dreaded never ending story.
You can follow Brooke on Instagram @brookethecreative
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