My journey to relief: Travelling for endometriosis excision and pre-sacral neurectomy
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 bring relief from symptoms for some women, there are others who do not find such relief with these measures. I was one of the women who failed to find relief of symptoms despite many years of medical therapies, and several surgeries. I was even told that I could not have symptoms while on hormonal medication. This belief is not supported by medical literature, the opinions of highly regarded endometriosis surgeons, or the experience of many women suffering despite medical treatments. Ten years after my initial diagnosis, at 28 years of age, I was considering a hysterectomy. The pain I dealt with daily was torturous. I was so thankful to have had the privilege of being blessed with children (something that is yet another overwhelming pain to cope with for those experiencing infertility). Yet I was also deeply distressed at how much I struggled to be the mother I envisioned for my children. I couldn't vacuum more than one room at a time. I couldn't wash a single load of dishes at once. I could not carry a full basket of washing. I would frequently be unable to stand and often had to cut short nature walks or play dates and other activities. When pain took my breath away, it hurt me to hear my children assuring each other that I would answer them soon, when I could speak. Before the children I had struggled with the pain physically, and that became emotional too when I could see how aware they were (despite my best efforts at minimizing the impact on our family). This motivated me to consider surgery I had previously chosen to avoid - a hysterectomy. I wasn't ready for this surgery (having had several miscarriages) but I was assured it would provide relief and leave me symptom free. I felt obligated to explore this option for my family, and eventually resigned myself to the idea. I am so thankful that while I had accepted the hysterectomy as a likely necessary treatment, I happened upon a wonderfully knowledgeable and supportive 'endo community' online. As a teenager I had found research from Dr David Redwine. Since Dr. Redwine was based in the U.S. I was unable to seriously consider surgery with him at that time. I was also told by a number of surgeons that the outcome would be no different - that I could expect a return of pain and symptoms regardless of who operated on me. I was disappointed, but trusted that surgery was comparable amongst different surgeons. Then as an adult I came across a site collaborated by Dr. Redwine and Libby Hopton (http://endopaedia.info/community.html both Endopaedia and EndoMetropolis have been incredibly helpful to me, with a lot of personal questions being answered by Dr. Redwine and Ms. Hopton). They have given so much time and energy to educating women about current research on endometriosis. I now know that recurrence rates vary greatly surgeon to surgeon; that there are surgeons capable of personally excising disease from the bowel and bladder; that there are surgeons dedicated to the treatment of endometriosis and removing disease - without resorting to removing organs. I know that research shows great odds of resolution of symptoms long term when a patient undergoes thorough excision, and that there are cases where the disease is too complex for many surgeons to fully excise a patients endometriosis. This means that women will not necessarily receive a similar standard of care from any surgeon she sees and may instead be treated with an incomplete surgery and/or medical therapy with the aim of suppressing her endometriosis, not removing it. When that is suitable and effective for a patient, that can be a perfectly acceptable treatment. For those patients who do not find relief, or those who cannot (or do not wish to) tolerate medical therapy, it can bring vastly different results for her to seek surgery with an experienced endometriosis surgeon. I found that in my own encounters this was not widely recognized or discussed during appointments with surgeons. Had I known this, I would have sought different care earlier in my life. It can be hard to find access to a highly skilled endometriosis surgeon, although options do exist (payment plans, or the release of superannuation to access surgery for example). When a woman is never informed of the possibility that she may have a better outcome with a more experienced and dedicated surgeon, then the option simply does not exist for her. That is a shame when women are suffering and feeling despair at their situation. Dr. Koh was wonderful from the first contact. He personally answered multiple questions and gave me great reassurance over email. My husband and I decided that it would be worth my travelling alone to Singapore for surgery with Dr. Koh, as we were concerned that we simply did not have all surgical options available to us locally. I desperately wanted to be functional and we believed this would give the best chance. Dr. Koh had been very kind and while he had not assessed me in person, was willing to give his opinion on potential treatment. One suggestion was that I may require the hysterectomy due to uterine symptoms. Endometriosis rarely needs to result in hysterectomy - this is a common, yet medically often unnecessary, treatment of endometriosis patients. It may well provide relief of symptoms for women (and as such it is reasonable to consider when she lacks access to a surgeon capable of adequately excising severe endometriosis) however that does not guarantee an end to her pain and symptoms. I know several women who continued to suffer despite hysterectomy with both ovaries removed. Studies also show this can occur. So for some women, they will continue to suffer despite this surgery; others may well find relief but have undergone such invasive surgery due to lack of viable alternatives. Dr Koh was willing to assess and discuss further in person to give me the best possible advice on my own situation and we went ahead with arrangements. When it came time to have my appointment (fresh off the aeroplane) the staff at the clinic were lovely and accommodating. Dr. Lien met me with his receptionist, and made me feel welcomed and safe - this was appreciated as I had made the journey alone. Then I met Dr. Koh, and was at ease right away. He spoke with me about my experiences so far, and proceeded to gently perform a thorough examination and ultrasound. I was diagnosed with adenomyosis, which explained so much of the uterine symptoms that had continued to worsen (and accounted for the bulk of my symptoms). He was empathetic towards my struggles and the difficulty my symptoms had brought for myself, my husband and my children. I was shocked that adenomyosis had been ruled out just two weeks prior in Perth, and yet was so apparent that the notable features lit up the ultrasound with Dr. Koh performing it himself. He showed me the screen and afterwards discussed the need for hysterectomy to give the greatest chance of a pain free future. When I burst into tears, the staff were very kind. Dr. Koh then suggested I speak with my husband that night and let him know our decision prior to surgery the following morning. When the preparation for surgery began, all staff present were gentle, respectful, and made every effort to relax me. It was lovely to have such warmth from the team of care providers. The doctors spoke with me prior to the general anaesthetic being administered, and Dr. Koh told me that he'd been thinking a lot on my situation. He explained that if I agreed, he would perform the hysterectomy only if there were no alternative as he operated -however he would opt for a pre-sacral neurectomy if my situation allowed. He believed that doing so would be the best medical decision given my desire to retain the possibility of future fertility. He also told me after surgery that should it be necessary later, I would be able to retain my ovaries. This was a wonderful decision for me. Dr. Koh and his surgical team have quite simply changed my life. I was in less pain upon waking than I had been in years. The severe lower back pain that had plagued me most of my life was gone. I didn't require any analgesic post surgery. The following day I walked 5 flights of stairs - something I had not been able to achieve for a long time. As Dr. Koh and Dr. Lien came to see me the day of surgery, they explained what had been done. I had the pre-sacral neurectomy, the peritoneum removed, my bowel and bladder separated from my uterus - which Dr. Koh was able to proceed with himself, a dilatation and curettage (with evidence of heavy haemorrhaging from my uterus) and I had even had the diaphragm checked. They were very thorough. In my case, it turned out that the adenomyosis, not the endometriosis, seemed to be the cause of most of my pain. I had pain with sex having endometriosis in the cul-de-sac, and difficulty with my bladder and bowels due to being adhered with scar tissue from prior surgery. The terrible labour type pain and excessive haemorrhaging fit the symptoms of adenomyosis. Having the pre-sacral neurectomy allowed me to retain my uterus and have the best chance of being functional before I was ready to undergo a hysterectomy. And having the endometriosis excised also meant that I may keep my ovaries when that time comes. I am beyond grateful to Dr. Koh and his team for this - literally - life changing surgery. Upon returning home, I was the sole carer for our children as my husband worked, and we were also moving house. It was good to return having had such a thorough surgery and with the pre-sacral neurectomy, to find great relief. I felt better than I had in years and that was an absolute joy for our family, especially given our circumstances. I continue with haemorrhaging issues, as Dr. Koh had explained I would, however I am not dealing with labour type pains. I distinctly remember being 'surprised' by a period after my surgery - that had never happened before. Periods came always with days of warning pains. My life is very busy, and I'm able to manage more than I could have hoped for. I cook, clean, care for my family, we have explored areas of our beautiful state that I could only have dreamed about doing prior to surgery. My husband and I are both so very thankful. We can take our children to the beach, for bush walks, or 4WDing without the agony that used to accompany doing these things. More than that, our relationship has become more rewarding as intimacy is no longer causing me severe pain. This deep internal pain would at times cause me to scream and would last days after our intimacy. After surgery, I have experienced pain free sex for the first time in my life. That has given us a gift that I could only have dreamed, as my husband is no longer concerned about causing me pain and I am able to experience being with my husband as I should. Such a simple, yet profound change for us. We thank Dr. Koh for taking me on as his patient. We are also grateful to have had another child since the surgery, which would not have been possible if it were not for the skill of Dr. Koh and his team. The following describes some of my symptoms prior to my surgery with Dr. Koh. These are symptoms that I no longer live with: - sharp stabbing pains - dull aching pains - burning pains - 'hot wires' and cold sensations - severe pain in lower back - pain radiating down legs - feeling of 'aching bones' in legs - feeling of fullness and pain in bladder - pain felt along and behind vaginal wall - contraction like pains - vomiting I still get swelling in my abdomen, and ongoing heavy loss with clots. I also have some nausea at certain times in my cycle. All of this is expected and none of it stops me in my tracks, as happened prior to surgery.
I would like to note that my relief has come with a combination of a world class surgeon performing my excision and pre-sacral neurectomy, and also with the follow up care of a wonderful Women's Health Physiotherapist who has been manipulating my muscles into functioning normally (Dr. Judith Thompson at BodyLogic Physiotherapy). The physiotherapist explained that when we have chronic pain, our muscles will tense and knot. That leads to further pain signals, and further tensing and knotting. Eventually the muscles cannot function as normal, they may become shortened and weakened, have bands of palpable tightness, and trigger points of pain. Dr. Koh removed the cause (endometriosis) and path of transmission (pre-sacral neurecomy) of my pains; the physiotherapist taught my body to relax and worked my muscles to return to normal function and experience the full relief I have had post surgery. It was necessary for me to see her to find relief of the last niggles of pain - pain which was muscular in nature from my body being hypersensitive in self protection. Without the surgery, I would still have severe unrelenting pain. Without the physiotherapy, I would still have the remnants of pain from overly toned muscles. I did not realise how much our bodies are affected when faced with chronic pain, and am pleased to have had this physiotherapy work after my surgery. The combination has given me a wonderful new life where I am active and able to take joy in each and every day. I thank the Lord for finding this help and hope that it may be possible for more women to find similar relief. * Endometriosis has been surgically diagnosed and confirmed in women, girls, infant girls and even foetuses. It has also been documented in men. I use the term 'she' to represent the vast majority of patients.
Ruth will be a guest panel member at our support group meeting with guest panel in October later this year, with the topic of travelling for surgery'. Go to our events section for more information.