Sparking the ‘That's Not Normal’ Period Conversation for Change
By Jo Lincolne
Wellness Holistic Endometriosis Support
By the time I turned 18, my abdominal pain started to hit me. It hit so suddenly and so hard!
I was carried out of a lecture hall by a fellow male student to the university medical centre, because I was rolling around on the auditorium floor in agony. I have lain for over an hour, curled up on the floor of a public toilet cubicle. I have been in acute pain, thinking for sure I would soon faint from the agony. I have been picked up by strangers in their car, who found me lying on the side of the road while I was out for an innocent stroll. I have been held on my bed by my boyfriend while my body shook, even though I couldn't bear to feel any touch or hear any noise. I have thrown-up into a plant pot in a public shopping mall. I have slept on my desk in the middle of a work day. I have been up all night with pain and gas - oh the joys! I have spiraled mentally down into that black hole...
It finally took a new friend who I was out walking with one day to say to me, "…Jo - that's not normal!" to prompt change.
Her statement jolted me awake. Up until then, my family and my close friends had never said anything of the kind. It was just known that “Jo had bad periods”. We now know that this 'normalisation of pain', often experienced with family and GPs, is one of the reasons for such a delay in an endometriosis diagnosis. I will be eternally grateful to that friend.
Soon after, I was booked in with a gynecologist who sent me off for a pelvic scan. He listened and pre-diagnosed me almost immediately with an endometrioma on my ovary. He did not dismiss me like some others have experienced. For that too I am forever grateful, although I didn't take on board his "…get pregnant quick!" advice.
I remember my post-op follow-up very clearly. My surgeon was pleased to inform me that he had successfully removed a decent sized endometrioma (a ‘chocolate cyst’) from my ovary, and he had also removed a good portion of my left ovary. My left ovary!
I sat there stunned. No-one had even asked me! I was 26, and had never had surgery before. I felt a bit lost - and yes, overlooked - in the whole process. I asked, “Am I ok now? Am I fixed?”
I was expecting a resounding “YES!”
I had undergone surgery. I had lost part of my ovary. Surely that was enough? However, what my surgeon told me next has stayed with me since that day. He said, “Well…it’s likely you will need to come back in for surgery every couple of years.” Again, I was stunned. I asked him, “Is there not anything else I can do?” “…Just come back in when necessary.”
Even at 26 with no real knowledge of my condition, my inner intuition was sure that this could not be all, and I could not fathom a lifetime of surgeries!
I was shocked there was so little on offer for me in regards to support and treatment.
During that time, natural therapies and practitioners started to shine a beacon of light for me and provided a road back to myself. I found answers and relief. Holistic practitioners instructed me in the craft of castor-oil packs, yoga, abdominal massage, essential oils and supplementation. Acupuncture (blessed acupuncture!) also helped to reduce my pain levels. My nutrition training taught me about a low-inflammation diet and life-style and my coaching experience taught me about training my mind.
I began to move my body and ground my being and I began to manage my body, healing from the many 'wounds' of endometriosis.
This has brought me to where I am today, working in the specialty I am most passionate about as a holistic, endometriosis wellness coach, helping women with endometriosis regain control over their symptoms.My road like many with endometriosis, has been long, at times very dark, confusing, often lonely, and with many twists and turns and new road-blocks at different stages. I know I am one of the lucky ones.
I received a fairly early diagnosis compared to others.
I had only been putting up with the pain for 8 years at that stage - not 18, and I am now so overjoyed with current medical and surgical research, greater awareness and support bodies like QENDO surrounding endometriosis - but there is still so much work to do.
Since I turned 26, my quest has been to take back control of my health. Now that quest has become to support others with endometriosis. I want to help them take back control of their health, so we can move from surviving to thriving!
This Blog has been written for QENDO and shared with consent.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.
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