I was diagnosed with Endometriosis in December 2006. I know now that I have had this disease for a lot longer than that...maybe even 20+ years, but I just didn't know it. Of course eventually it will make you notice it and that's when you start to seek treatment. I have Stage lV disease, and severe Adenomyosis. I have had three laparoscopies and a radical excision of my pelvic wall and reconstruction of my ovary. The reason why I had three surgeries? For the precise reason I am making this website....because I have learned things that I didn't know before and am now paying for my ignorance.
I won't bore you with details, well not too many anyway, but just in case there is a woman out there who is experiencing these issues and is currently as clueless as I was, you never know....it might just help somebody out. Let's start with back pain. Lots of back pain. Intermittent, nagging and always there. Not enough to debilitate me, not then anyway. Being in my 20s and not having a care in the world, I never gave it much thought. Fast forward 10-20 years and it starts to get serious....disabling, debilitating....interfering with life, job, fitness....everything. Then there's all the issues associated with the dreaded menstrual cycle....the depression, the irritability, pain, anger, pain, mood swings, pain, bloating, pain, carb cravings, fatigue, pain, fatigue, pain, fatigue, pain. Getting bored yet? Hearing the words over and over again does start to get a little irritating. But imagine not just hearing them, but actually experiencing these symptoms over and over again, month after month after month.....it's not just irritating, it's downright disabling. Still....no bloody clue! I continued moaning about it and trying to get on with my life and getting angry with myself because I simply couldn't make it more than a few weeks without getting back to square one.
It took a serious, life-changing, unbelievable, intense, agonizing, violent pain to change my life in one swoop. I was at work one night, minding my own business and suddenly the pain started...out of the blue. It started as sharp and annoying, and within the hour I was unable to walk without severe pain. It was in my hip, or was it my back, or was it my abdomen? I wasn't sure. All I was sure about was that it was bad...really bad. I went home, somehow managing to drive. I thought a good night's sleep would cure me of my ailments, but the next day it was worse. And the day after that it was even worse, eventually confining me to my bed. For one month I could barely walk, at times even unable to get to the bathroom unaided. I was frustrated, angry, pissed off, and actually very scared. What if I couldn't work? What if this was how it was going to be? What was wrong with me? Did I have a slipped disc? Five doctors later, and after x-rays and an MRI, I was none the wiser. Nobody could help me. The doctors just didn't know. That was the scariest thing...not knowing. The insurance company was unhelpful....refusing to pay for things, being obstructive and unhelpful, and then to top it all, I was fired from my job for being off sick for too long. I was just about as low as I could go.
Then a chance remark by a junior female doctor changed my life irreversibly. She said one word....."Endometriosis". "You might have Endometriosis". My first reaction was an indignant snort and a retort that sounded something like "oh don't be silly, of course I don't". Utter disbelief. Not hearing. I went home and looked it up on the internet. After 5 minutes of reading I sat down and cried. Cried and cried and cried. 20 years of pain and suffering and it was solved. I had Endometriosis. No matter that it could only be diagnosed by surgical intervention...I knew I had it. I knew with all my heart and soul because it fit. Every damn little thing fit. Then I began a mission...to find out everything about it, how to deal with it, how to tackle it, how to live with it. I found out pretty quickly that there's no cure, and that sure sucked to hear, but I realized there is hope. I had surgery in December to diagnose and stage it, But because I chose a basic, run-of-the-mill OBGYN, I was mis-diagnosed as Stage 1. Minimal he told me. Nothing you can do as it can't be that bad. He told me my right ovary was "barely adhered to your pelvic wall. I think I released it". Nonsense. I was suffering and I knew it. I continued with my plan...to be simply diagnosed by a regular OBGYN and then seek a better doctor depending on the outcome and severity of my diagnosis.
I approached an extremely prestigious Reproductive Endocrinologist who had great experience with Endometriosis, who has written many papers, books and studies on this disease. He operated on me in May 2007 and I was diagnosed with Stage lV disease and severe Adenomyosis. My right ovary was deeply embedded in my pelvic wall, complete with a large Endometrioma. My uterine ligament was almost completely eaten through with disease and I had lesions on my back and behind my uterus. I had lesions on my left ovary and throughout my pelvic wall. The best was saved for last, of course. I saw the pictures of my uterus and the back of it was almost completely eaten away with disease. Large holes and lesions were evident and were so shocking to me that I gasped when I saw them. How on earth did the first doctor not see this? How could he miss something this big unless he never looked in the first place? How could he have released my ovary when it was so deeply embedded that it needed to be reconstructed? The Reproductive Endocrinologist did a fine job saving my ovary but was unable to do anything for my uterus and recommended a hysterectomy. I decided to read some books first before I made up my mind as the thought of it did not feel right to me. I read three books, which I will list on myRecommended Reading page, and made the decision that I would not have a hysterectomy at this time. My reasons are many, and I will discuss them further in this site.
Unfortunately, even though I had requested that this doctor used the excision technique, his idea of excision was to burn the top layer off of the disease with a lazer, and in fact, rather than making me better, it made the pain worse. Three months out from this surgery my pain was twice as bad and I was having difficulty walking and working. He was also offering me Lupron, Danazol and Birth Control Pills, which I resolutely refused. So you see, despite picking one of Time Magazine's Top 100 Doctors in the US, I was still in pain and did not have my issues resolved.
So this time, after doing a ton of reading and research, I discovered that the key was to approach a real Endometriosis surgeon who specialized in the Excision technique. This has led me to Dr. Martin Robbins at the New England Center for Endometriosis in Maine. I spoke with him at length and we seem to agree on the treatment plan, and so I am travelling up to Maine in a few weeks for more radical surgery. He has agreed to do a resection of my uterus, rather than a hysterectomy, which will preserve its function. I know this sounds crazy to most women, who say "why don't you just have a hysterectomy?". Well, if you read those three books I mentioned, about why you shouldn't have one, then the reasoning would be clearer. I am hoping this is third time lucky. I have spoken to many women who have had extreme pain and then had surgery with Dr. Robbins, and who woke up with absolutely no more pain. I will update this website as to the outcome of this surgery. The plan is for resection of my uterus and uterine ligaments, excision of deep endometriosis from my pelvic wall and back, and reconstruction of both ovaries. If any disease is found on my bowel then I will return for a bowel resction a second time.
It's funny, because when you mention the word "Endometriosis" to people they get a kind of blank look on their face, and say "oh, that's like women's bits, eh?". Well, yes....I suppose it is, but what they don't realize is that it's also a systemic, auto-immune disease. At certain times of the month just basic living becomes a challenge. You know, the kind of living that requires getting up in the morning, exercising, washing, eating, going to work. I become my own drill sargeant: "get your lazy ass out of bed and get down and give me 10!" I'm mean. I have to be otherwise I'd lie there and cry and that's kind of girly. I suppose I would describe the fatigue aspect as like being hit with Katrina force winds, going 5 rounds with Mike Tyson and then being run over by a Dodge truck. And that's just on a Monday. Then I have to dust myself off and actually deal with working a 12-hour shift and all that fine stuff. It's hard. Sometimes I wonder if it will ever end, or if I just have to find a way to get from month to month until menopause. I can't really run away or take a break so I suppose I must. Yay...another 10 years! Right now I have difficulty doing up my shoes but I still hit the weights in a big way. After all it will only get worse with inactivity.
So...what to do? My current plan is sort of working. It's keeping me sane anyway. I have really bad days but then, who doesn't? I take 3 million vitamins and supplements every morning. Sometimes there's little room left for breakfast, I kid you not, and I rattle when I walk! I work out. Every day. Even if I'm dying. Even if it hurts. It's worse when I don't, although lately I find that walking is about as much as I can manage these days, as I am not able to run because of my hip pain. I eat healthy. I'm one of those annoying health freaks that reads labels obsessively and lectures you till you're bored and wanting to run away. No wheat, no red meat, no processed foods. It takes me 30 minutes to get all my food ready for the day ahead and people at work laugh at me with my cooler on wheels but I don't care! Most of my food is organic and I never touch anything with high fructose corn syrup or hydrogenated fats in it. I use Progesterone Cream. Lastly, I found a damn good surgeon. So....until then....I'm in training. See you then!
I'm busy working on my blog posts. Watch this space!