Update 2012


I get a lot of emails asking me for an update so I thought it was time that I did one. I had my surgery with Dr Robbins in 2007, and he found extensive stage 4 disease. I had a radical pelvic wall resection, release of embedded ovary, removal of chocolate cyst, and excision and repair of uterine ligaments. My main problem going into surgery was that I was having severe nerve pain in my coccyx every time I stood up, as well as pelvic distortion from the progressive disease process. Overall my surgery with him was a very positive experience. I found him to be kind, knowledgeable and attentive, and he explained things very well. I had my surgery in Maine Medical Center which was brand new at the time, and again, that was also a positive experience. Afterwards I experienced some deep pain in my left hip and buttock and I was concerned about it so I contacted Dr Robbins. He thought that maybe it was muscular rather than actual disease and encouraged me to go to physical therapy. I was dubious at the time, but after putting myself through a rigid self-inflicted course of weight training I must say that it definitely improved. The pain still lingers, and is especially strong before my period, but the rest of the time it is manageable, as long as I keep myself fit. I use a TENS machine for it sometimes, which I find very helpful. I recommend it.

After the surgery

Since the surgery, the nerve pain in my coccyx completely disappeared, much to my joy. It has never returned since that day and I have no issues with my coccyx. Sadly, in the past 5 years I have come to discover how pervasive and destructive this incurable disease is. I struggle with it daily, and its influence on my life is enormous and relentless. The main, and most difficult symptom for me to bear, is fatigue. It is the one thing that stops me in my tracks and prevents me from living my life to the maximum I feel I am capable of. The fatigue is bone-crushingly absolute, like trying to walk in waist-deep mud and it happens without fail on day 14 and can last up to a week. When the fatigue comes, I always know because I find it too hard to get out of bed and just breathing is too hard a task, and yet I still have to get up, go to work, and function somehow. It's the one thing that I really have difficulty coping with. I am a very active person. I run, I cycle, I weight train, and sometimes I have no choice but to accept that I can't physically do what I want to on any particular day. I work full time, and I go to school, and sometimes that's more than enough. I find it very difficult to explain to other people, and often they just don't have any concept of how bad it is. After all, internal disease is invisible to anyone who doesn't experience it.

My uterus is in really bad shape and I should have it removed, and yet I have hesitated at the idea for over 5 years now. Dr Robbins wanted to remove it but I requested him not to. I have read a lot of books about hysterectomy and I just didn't feel that it was right for me, however, as time goes by the need for it increases. I am in constant pain. The last pictures taken of my uterus in 2007 showed multiple large lesions, and the ligaments were eaten through with disease. I was also diagnosed with Adenomyosis and my uterus is enlarged and retroverted. This coupled with extensive Stage 4 disease has caused pelvic distortion. I can no longer sit normally in a chair, and I must have a back rest at all times, unless the chair has good lumbar support and tilts back. I also feel the need to keep my feet up on a step, or sit in a chair low enough to have my knees higher than my hips. I also have trouble pushing and pulling heavy objects. At work I am often required to push heavy beds with patients in them, or pull a patient towards me. I try to avoid those movements at all costs because of the intense pain it causes me for several hours afterwards. I must always wear an abdominal binder because just standing for more than a few minutes causes my uterus to pull on my ligaments and cause pain in my abdomen, back, hips and down my thighs. Finally I have accepted that it is probably time for me to have a hysterectomy. I really wanted to avoid it but I think I am past the management phase and more in the suffering phase right now.

My other main issue is GI. My GI symptoms have worsened over the past 5 years, despite the fact that I had NO endometrial implants on my bowel. It is thought that the implants in the pelvis cause inflammation and irritate the mucosa of the bowel causing these symptoms. Because of this I have attempted to follow the advice given in Dian Shepperson-Mills book: Endometriosis: A Key to Healing Through Nutrition. In my opinion this is the most important book ever written about Endometriosis and her work and advice has helped me immensely. I advise everyone to read it. I believe that more than anything else, food and nutrition is key to surviving and living with this disease (and many other diseases). I have a huge interest in nutrition and its link to disease. I also recommend the documentaries Forks Over Knives, and Fat, Sick and Nearly Dead. Both are available on Netflix and deal with the inextricable link between what you put in your mouth and how it translates into sickness. I have mostly cut out red meat, dairy and wheat from my diet and have found that helpful.

I have found over the past 2 or 3 years that I have also developed multiple chemical sensitivity. It is most apparent when I come into contact with perfume. My reaction is extreme and profound and I didn't understand it at first, but after reading the book Hormone Deception by Lindsay Berkson I understood that all the chemicals we come into contact with in the normal environment can disrupt our hormones. As our hormones are already severely disrupted because of the disease process, continued exposure to these chemicals can make us ill over a long period of time. I have changed the products that I use at home and have banished parabens from my home, but perfume continues to be a real problem for me, particularly as I work with the general public. Often at work I have to wear a mask which I find very uncomfortable and inconvenient. The worst part of this is that I find it very difficult and embarrassing to explain to other people, and I find that most people either dismiss me as neurotic or underestimate the severity of the impact perfume has on me. It is very distressing to explain to someone that their perfume is making me ill, especially if they then refuse to stop wearing it. It's something I continue to struggle with. I usually tell people I have an allergy but if they engage in the conversation I tell them that it is an autoimmune problem and that I have hormone disruption.

Overall, the hardest part for me to accept is that no surgery can act as a magic cure. Dr Robbins definitely solved one of my more severe problems, and maybe if I have the hysterectomy, it might solve a few more. Of course I won't let anyone but him operate on me. I would definitely advise someone to have excision surgery over any other kind of surgery, especially if they are having acute pain, but it's only fair to say that surgery is not a cure-all. This disease is incurable and pervasive and exhaustingly cyclical. The hardest aspect of this disease is it's relentlessness. Every month the roller coaster ride begins again and no matter how prepared you feel, the disease will always have the upper hand. I'm sorry I have no more positive news to share but I feel that being realistic is the best way. I refuse to be beaten down and I never give up and always try to do right for my body, but sometimes the exhaustion is more than I can bear and I become very despondent. I would say that a good and well-performed surgery, a healthy diet, a good exercise plan and a good attitude is vital to surviving this disease. I do appreciate getting all your emails, and I do read every one. Unfortunately, because of my work and school schedule I am not always able to answer them, but I do appreciate that people are reading my experience and advice. I wish you good health!


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