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My journey to relief: Travelling for endometriosis excision and pre-sacral neurectomy

April 29, 2017

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My journey to relief: Travelling for endometriosis excision and pre-sacral neurectomy

April 29, 2017

 


I am writing for those who are dealing with the symptoms of endometriosis or adenomyosis. It is my hope that the care and management of 'endo' patients does not remain dependant on local resources; rather that she* may find options further afield which have perhaps been overlooked. (It is this information that led to relief for me, something I am truly grateful for).

This is my story on finding relief after years of exhausting the options offered locally. I am delighted to know several more women from Perth who have now also travelled and undergone surgery with the same surgeon that I chose - all with great outcomes to date (including a woman who had undergone previous hysterectomy and continued with pain). This surgeon is an incredibly kind, compassionate and supportive man who operates from the U.S., Singapore and Italy. He is an accomplished surgeon who has pioneered tools and techniques for surgery, and travels internationally as a lecturer and to demonstrate his surgical techniques. Please find more information here: http://www.endometriosis-surgery.com/about-test/about-dr-koh/

I began having painful, long and heavy periods at just 10 years of age. The pain would stop me playing with friends in primary school at lunch time, and in high school would make it tough to climb stairs to classes or participate in the sports I enjoyed. As a young child and teenager, I was quite private with the pain I was experiencing. I dealt with excessively heavy periods with massive clots, lasting 10-14 days. Over time this increased to 2-3 weeks of haemorrhaging per month and I would often flood through both tampons and maternity pads in a short space of time. I found it embarrassing that I struggled with what I believed to be (and was told I had) normal period cramps. The pain also changed over time from effecting me just during my periods to becoming a daily pain similar to labour (I've laboured naturally several times now, and until that point did not realize my pain was comparable in both level of discomfort and in sensation). It was certainly not 'in my head' as suggested by less than sympathetic care providers. I do firmly believe we cope better with a positive outlook, however physical causes of pain won't disappear with a good attitude and a smile. We cannot expect a patients symptoms to cease without adequately addressing the cause(s).

After failed medical therapies, I had a diagnostic laparoscopy with pathology confirming endometriosis at 18 years of age. Unfortunately the surgeon chose ablation, which can often lead to continued or returning symptoms as the disease is frequently left behind in the body. Excision surgery aims to remove the disease in its entirety. The frustrating difficulty many women are faced with is that endometriosis surgery is incredibly challenging when surgeons are dealing with severe cases. Some of the top surgeons worldwide have spent upwards of 10 hours laboriously operating on women requiring complex care. There are just a handful of surgeons capable of operating on the most surgically demanding endometriosis cases; the skill and dedication of these surgeons is astounding. These surgeons must meticulously navigate vital structures such as ureters, bladder, bowel etc while freeing organs adhered with scar tissue, and also maintaining fertility for patients who request this. There may be severe scarring, or involvement with organs not typically associated with endometriosis, such as the diaphragm, which requires great expertise to treat. Many surgeons will understandably choose to manage their patients with medical therapies or incomplete (as to avoid injury) excision. While this can b