I went to Portland, Maine back in October, but haven't blogged about it for so many reasons. The first being it was a medical trip (which happened to have some of the best food!). Although I'm in the medical field, talking about my own personal medical journey always seemed overwhelming. But I'm opening up here because this subject is too important to silence.
Lets start with the bare bones I suppose- I suffered tremendously with endometriosis for nearly 11 years. In the beginning it was a nuisance, but I continued living a very normal life (with the exception of multiple supplements, prescription medications, and a few days of severe pain). But endometriosis tends to get worse with time, and in my case this was proven to be true. I started looking into unconventional treatments after all conventional treatments drastically failed me. My unconventional treatments ranged from a strict herbal and supplement regiment to diet changes (including the Endo Diet, dietary recommendations from my ND and dietary restrictions from my Doctor of Oriental Medicine), all of which seemed to improve my quality of life subtly (and to this day I maintain many of those diet changes). I regularly had appointments with my Acupuncturist, Chinese Medicine Herbologist, Chiropractor, and Biofeedback Specialist. This group of healthcare practitioners kept me afloat for so long, and I mean that with every fiber of my existence. They gave me so much hope and truly inspired my journey into my medical profession of Traditional Chinese Medicine.
I'm very fortunate to have had the support of my family, because none of my treatments, detoxes, adjustments, herbs, supplements, etc were covered by insurance- and I can't imagine how any woman can deal with endometriosis without support- whether that be emotional, physical or financial. I was blessed, I had the trifecta. My parents helped me afford my medical care, and my friends and loved ones were my emotional, and often times, physical crutch that held me up (or took me to the emergency room, 3 times this past year alone). The past two years for me have been the worst. I was constantly missing classes, canceling plans and vacations (thank you Southwest Airlines for never penalizing me on any of my missed flights!). To make a long story short I completely lost hope in all of my dreams. I always lived very big- I loved to travel, I was fearlessly independent, I was spontaneous- endometriosis robbed me of all 3 of those things. I couldn't plan trips, I was terrified of being alone in case I got sick (my reality of being sick 3 weeks out of every month, one of those weeks I suffered traumatizing systemic pain), spontaneity was no longer part of who I was. It's a terrible thing, to be robbed of who you are, and my heart goes out to anyone who suffers from or cares for anyone with endometriosis. I was desperate for relief and I learned very early on in my diagnosis that I had to be my own health advocate.
During those 11 years I saw 4 gynecologists and 1 surgical gynecological oncologist who all told me the same thing "There is no cure. Take birth control pills and prescription pain medication. You can do a laparoscopic ablation surgery (the same surgery used to diagnose endometriosis which yields almost no relief with almost a 100% guarantee if you get relief it will be short lived and you'll require more surgeries in the near future)". I know of women who were encouraged by their gynecologists to get these surgeries, and they've ended up under the knife up to 2-3 times a year, totaling over 20 surgeries in a 10 year span. Those stories always grounded me and I never allowed my doctors to talk me into those odds.
After a particularly horrifying few months I was determined to find something that could help, I didn't discriminate- conventional treatments, unconventional treatments, alternative treatments? I was open to anything. By some incredible divine intervention I stumbled upon a book called Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know and it literally changed my life. I found out that there is an endometriosis surgery that typically yields results that are considered "curative". The rates of relief are remarkably high, and typically only require one surgery to get those "curative" results. I found this book on September 4th, 2015. On October 22nd, 2015 I was in an operating room in Portland, Maine undergoing this procedure.
That's not to say I didn't do my research. For the next two weeks after reading the book (which I finished in one day), I did a tremendous amount of research, spoke with women who had this surgery (preformed by surgeons who specialize solely in endometriosis wide-excision laproscoptic surgery). I was shocked to find out there is only a number of doctors in this country that specialize in this type of endometriosis excision, and even more surprised to find out that insurance companies typically will not cover this, but will cover the other surgeries preformed by gynecologists that produce almost no beneficial results and require multiple surgeries, often times several times a year, for many years to come. Mind blowing, isn't it? (If you or anyone you know suffers from Endo, please read the book as it goes into detail on the differences between the two surgeries along with the statistics for both).
After looking over the surgeons that specialize in this, I found the one who I felt would be the best fit for me (none of the specialists live in my state- and it didn't even matter to me. I would've flown to Europe if it was my only hope). To spare the details of what the surgery entails (read the book if you want those), my surgery went smoothly. I was under for nearly 4 hours with confirmed pathology of disease on several organ structures, all successfully removed. My surgeon was extremely optimistic about the surgery and said he believed, in my case, it would in fact be curative. I couldn't believe it.
Part of me is waiting for the ball to drop. I'm still learning how to trust my body again. My immediate reaction when I feel even the slightest bit of pain is "oh no, this is it- it didn't work..." and I go into sheer panic mode. I can feel the fear of being afraid to leave the house, afraid to be alone, afraid to be anywhere except a 10-mile radius of the nearest emergency room start creeping in again. This is all normal (according to the book!). This is phase 2 of my healing process, to learn to trust my body again. To learn to be fearlessly independent again. To learn to live that big life that my soul so desperately craves.
The reason why I'm sharing my story is because I had so much life in me, and it slowly started to fade away. If I didn't relentlessly fight for it I would've lost everything that ever mattered to me. My independence, my love of life and adventure, my huge dreams and the mountain of goals I built for myself. Statically 2-10% of women in the United States suffer from endometriosis, many of those women are misdiagnosed for years- decades even. They are being talked into surgeries that are not effective, given hormone therapy or other prescription medication that doesn't help the condition and can cause undesirable and serious short-term and long-term medical complications. Many of those women are told their pain is not real, they're not taken seriously by the doctors who should be advocating for them. I'm not kidding, I've been denied pain medication in an ER and left under observation for over an hour before finally being properly treated. (Side Note: I asked my surgeon what to expect the post-surgery pain to be like, and he sort of just smiled and said "women with Endo tend to do very well with this surgery and typically don't even require prescription pain medications, after the pain you typically experience, this will be nothing." He was right, the post surgery pain was nothing compared to the pain I've had with endometriosis. Post surgery I took an over the counter dose of Tylenol which was more than sufficient. So to even think women are made to feel that their Endo pain is not real or we're being dramatic is just infuriating).
I can only hope my story gets into the hands of those who need it (so pass it on if you know of anyone suffering). There is medical intervention that can change your life. I suffered for far too long, and I so desperately wish that the general medical establishment was more educated in handling our care- because maybe if they were I, and so many others, would've had appropriate medical intervention years ago. I have the entire world again, and it's just remarkable. Also, let me just give a quick shout out to Dr. Robbins, my incredible surgeon!
Please feel free to share this story with your loved ones, your friends and family in the medical field, or any woman you know who is suffering with endometriosis/the people who care for them.
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