Talking Endometriosis with Emily-Jane
By Emily-Jane Bromley, The Endo Nurse
My Endometriosis journey is one that spans 20 long years with chronic pain being a part of my life since I was 11 years old. My very vivid memory of my first period is one preceded by an intense migraine & then the worst pain I had experienced as an 11 year old as my period began. This is a pain I still experience to this day with every period, now understood to be Adenomyosis. As I expressed the pain I was experiencing to my mum she informed me that this was normal, despite her never experiencing period pain herself, she was also under the illusion that she was one of the lucky ones & it was normal.
In & out of the doctor's office with debilitating passing out, throwing up, period pain & the development of other symptoms ensued with very little acknowledgement of my experience and several visits clouded with the suggestion that I was in fact just depressed & the problems all lay in my head. I remember sitting next to my mum, her being told this as if i wasn’t in the room at all. I was prescribed antidepressants that day.
When I was 14 I was put on my first contraceptive pill. Assured this would stop the pain, but for all my other Endo symptoms I was diagnosed with Irritable bowel syndrome. In this time no testing or investigation of any type was done. I felt very confused, very dismissed & extremely exhausted. I hated my body, I no longer trusted it or understood why it was betraying me. I very quickly developed an eating disorder.
The next few years were spent in and out of hospital where I experienced some of the most degrading & traumatic medical examinations & dismissals of pain. I began to understand that going to the emergency department was not for answers or cures but for relief only. Pain medications, something to stop me vomiting & I became numb to the judgement & dismissal.
This went on until I was 17, which was a time of pretending I was well to all my friends & family, hiding my struggles & pretending I was just like everybody else, when one night a new experience of pain once again landed me in emergency & this time I was really scared. I had never felt pain like it & I was alone. I was told I had IBS after one simple abdominal examination & sent home.
That night my unidentified, large ovarian cyst ruptured. I was rushed back into hospital in an ambulance to undergo emergency laparoscopic surgery. This would be the first of 7 surgeries.
On waking from this surgery I felt that maybe that had been the problem all along, I was finally going to be able to live my life. The surgeon told me there was no other issue found, no Endometriosis & I should recover well & was sent home to do so. Fast forward 2 months & my symptoms were back, no change, no relief. Back to the doctor we go & this time I was given the Implanon implant. I bled for 6 months straight, became extremely anaemic & at this point a family friend recommended I see a consultant gynaecologist they had seen & it was this woman who changed my life.
Our first appointment was unlike any consultation I had experienced yet. She was kind, she heard me & acknowledged my experiences. This doctor was certain I was suffering from Endometriosis despite my first operation reporting none at all. Three month later I was back in theatre & low & behold Endometriosis & adhesions were everywhere!
It changed my life. That every single minute of everyday pain was gone, my endo belly was reduced & I finally had some answers. After this diagnosis & surgical treatment of diathermy/ablation I was put back on the pill & continued to take this back to back with no break for a bleed. This hormonal treatment masked both Endometriosis & Adenomyosis symptoms that I had, allowed me to live the life of a 17 year old with minimal symptoms & finish college. I was so thankful to have that.
At the age of 20 I moved from the UK to Australia. It was stressful & I had let my healthy eating slip, something had changed. The pill was no longer holding my periods back, I was breakthrough bleeding, unable to have a pain free day & knew it was time to find a new specialist. As a nursing student at the time I was able to see a specialist through recommendation, specialising in Endometriosis & felt positive about this meeting. To my surprise I was very bluntly told that my Endometriosis had returned & that the only way to solve my problem was to have a baby now & have a hysterectomy asap. I was shocked. Appalled that as a 20 year old university student I was told to selfishly have a child to fix my health problems & then remove my reproductive system in its entirety. This did not feel right to me. I went home & explained this to my partner at the time who was obviously as surprised as I was with this news.
I found another specialist, explained that I was not ready for children & requested I have another surgery & this is what we did. This surgery showed some pockets of Endometriosis sitting on major pelvic arteries & structures that then could not be removed. I have since recognised this to be the signs of a surgeon that was not skilled enough in surgically treating Endo. This meant the pain was never completely gone, it would infiltrate deeper & deeper as it reminded in place. Over the next 3 years i had another 2 surgeries, my 4th & 5th in an attempt to relieve pain, remove adhesions & monitor the ‘inoperable’ Endo lesions.
I felt utterly hopeless during this time. I was defeated. So I researched what I could do to help myself. What could I eat, drink, do to stop this if surgery was no longer the answer to my problems.
This was a time when the understanding of Endo as a systemic immune & inflammatory condition was relatively new but I found literature introducing the ‘Endo diet’ & I was willing to try anything.
I have always been a relatively healthy eater but I got STRICT with food & increased my physical exercise to 6 days a week at the gym. This was the turning point in my Endo journey.
I was already eating gluten free at this time due to intolerance but I continued to recognise that expanding this to include the exclusion of diary, caffeine, processed sugar, alcohol & processed food significantly improved the function of my body, improved my mental health & made me understand what was happening to my body as a ‘clean slate’ with no contributing factors. I could see how certain foods were affecting my gut & which symptoms were purely Endo or Adeno related.
At this time in my life I was living to the fullest, studying a double degree, working long shift work hours & enjoying student life & it was at the end of my graduate year at the age of 24 my body started to tell me it wasn’t happy again. It was this that made me realise that diet was not the only factor that I needed to manage in order to keep my conditions under some sort of control. I needed to give my body time to recover & heal, reduce stress & started looking into how the years of physical stress & the affects medications were having on my body.
Over the next few years I experienced a lot of up and down with my health as I tried different therapies, food variations, medication detoxes & struggles with autoimmunity but after struggling through my 7th & most extensive operation yet, I had finally figured out what was working for me & my healing journey. I stopped all suppression therapy after recognising the negative effects it was having on my body & was able to stop heavy medication to control pain, I knew what my triggers were, I stopped shift work, moved from intense gym workouts to yoga, pilates & walking, slept 8-10 hours a night & worked out the right strategies to reduce stress, anxiety & pain.
I no longer experience everyday pain, my gut health issues & Endo symptoms are practically none existent & I have developed ways to manage Adeno related period pain so I don’t rely on pain medication & trips to the emergency department.
These conditions are exceptionally complex, individual & can affect our lives in ways that we never imagined. But if there is anything I have learnt from advocating for myself & creating my own personal care & treatment alongside my medical care, it is that we may not be able to cure these diseases yet but we can absolutely transform our experience. I will forever fight for people just like me to receive the right medical care but I will also fight for people to know that there is so much we can do for ourselves & to never think you are powerless against your body. You have more control that you think you do & I hope I can help those still struggling on their journey or just beginning it.
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