Talking Endo and Team Building with Morgan Cruikshank
By Morgan Cruikshank
Throughout Endometriosis Awareness Month, we’ve shared the many varied stories of those who make up the endometriosis community. Though each presentation of endometriosis is as unique as the individuals themselves, a common theme has emerged. Endometriosis may be expensive, but what it costs so many of us is time. Time spent trying to get a diagnosis, time spent seeing new doctors or health professionals, time spent recovering from surgery, time spent waiting for a flare to be over. Morgan Cruikshank has experienced the symptoms of endometriosis since adolescence, but it took her over ten years to receive a formal diagnosis and have the excision surgery she needed for severe endometriosis. In this blog she talks about her journey to diagnosis and ongoing management, advocating for others to build a team they can trust to live with and manage endo.
Similar to so many others with Endometriosis, it has taken approximately 10+ years for me to receive a diagnosis.
During my adolescence I experienced heavy, painful and irregular periods. The doctors sympathized with my symptoms, though I was repeatedly told that my symptoms were not considered to be abnormal and were consistent with “heavy & painful periods”. No further investigations were suggested. Instead, it was recommended that I continue taking anti-inflammatories (e.g., Ponstan), oral contraceptive pill (OCP), receive iron infusions and use heat-packs. And so, I learnt to accept the pain and continued down this avenue for many years.
In my early twenties, I noticed that things started to worsen. The deep pelvic pain that I was familiar with, was no longer limited to each month. Rather it was more persistent and rarely eased. I also started to experience a range of other symptoms including; nausea, vomiting, bleeding in between periods, bloating, change in bowel habits (e.g., alternating constipation and diarrhea). I relied on anti-inflammatories and anti-nausea medications in order to get through the day. The symptoms became so debilitating that it started to affect my ability to attend university, social commitments, work and all the other activities which I previously enjoyed and participated in.
After noticing these changes, my mum insisted that we go and seek another opinion.
In March 2019, I met Dr. Peta Wright for an initial consultation. She suspected that I had endometriosis given my symptoms and family history however, advised that it could only be formally diagnosed via laparoscopy. Thus, a few weeks later I had my first diagnostic laparoscopy and Mirena placement.
Following the procedure Dr. Wright advised that the surgery went well, however I had extensive recto-vaginal endometriosis which was unable to be excised at that specific point in time. She explained that due to the location of the endometriosis it was recommended that I be seen by a gynaecologist whom specialises in the removal of severe bowel endometriosis and/or a colorectal surgeon, due to the risks involved. Receiving this news was difficult.
Fortunately, I was referred to Dr. Michael Wynn-Williams who is one of the leading Advanced Laparoscopic Gynaecologists and Endometriosis Specialists. In July 2019, I underwent my second surgery for the removal and resection of severe endometriosis (Stage 4) with both Dr. Wynn-Williams and Dr. Wright. This surgery seemed more daunting than the previous. Leading up to the procedure, I found myself worrying about the findings, whether the surgery would be a success, how I would feel post-surgery, the duration of my hospital admission, what recovery would entail, my fertility and future plans.
Recovery was much more difficult for this surgery and I was required to stay in hospital for several nights. Whilst recovering I had a post-operative PCA, urinary catheter, daily Clexane injections and an intermittent pneumatic compression device (IPC). The pain was manageable, though I struggled with severe vomiting and nausea. The RN’s trialled a variety of different anti-nausea medications however almost all had nil effect. I frequently became teary as I felt so utterly terrible and alone. My mum stayed at the hospital with me each day, and very rarely left especially whilst I was feeling so fragile. Once my catheter was removed, I then experienced some difficulties with emptying my bladder. The RN’s monitored this for several days using a bladder scanner. Gradually I began to improve and after several days, I was discharged home.
My recovery was not all smooth-sailing and was complicated with a laparoscopic cholecystectomy (6-wks post Endo Surgery), Mirena falling out, superficial thrombophlebitis (thought to be due to my recent cannulations), an array of issues affecting my pelvic floor and recent diagnosis of adenomyosis. The surgery has improved the severity of my symptoms; however, it is important to note that it has only been one aspect of my treatment. I have also received regular treatment from the following medical and allied health professionals; Dermatologist, Dietician, Pelvic Floor Physiotherapist and Psychologist to learn how to best manage my PCOS, Endometriosis and Adenomyosis.
My parents, older brothers and sister-in law have also played a significant role in my journey. They have seen me at my lowest, continually researched options, provided endless love and support.
Despite the time taken to receive a diagnosis and the challenges that I have endured along the way, I finally feel that my health and wellbeing is improving. I am now in a position in which I wish to share my journey, with the aim of helping other people who are going through this and let them know that they are not alone.
To all of the people who have been diagnosed and/or are still seeking a diagnosis, I encourage you to build a team of trusted health professions who listen to your concerns and work collaboratively with you. Surround yourself with family and friends who are supportive and understanding. Identify what strategies work for you, listen to your own body and engage in self-care activities.
Endometriosis is a chronic, debilitating and complex condition which can have a significant impact on an individual’s physical & mental health, fertility, relationships, career, finance etc. Consequently, I believe it is important to seek input from a wide range of individuals to learn how to best manage your condition so that you can continue to lead a meaningful and fulfilling life.
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