The Problem and The Plan.

I figured a description of what’s actually happening inside my body and the treatment plan to address these problems were both important and dense enough topics to warrant a separate post. :)

One of the doctors I saw during the past two months told me that there are as many theories about what causes endometriosis as there are about who killed Kennedy. And he wasn’t kidding. It’s very hard to find any conclusive information out there about endometriosis other than what it technically is: uterine tissue growing outside of the uterus. Every doctor is in agreement about that. But when you ask the majority of doctors why the uterine lining that develops throughout every single one of my menstrual cycles is suddenly also building up outside of my uterus, they’ll say they don’t yet know what causes that to happen. Awesome.

Well, the Integrative doctor I’m seeing is on the pulse of fairly recent research and findings that seem to answer that very question. The actual medical explanation is almost too technical and complex for me to fully grasp…let alone re-convey here. But here’s the nutshell: there is an incredibly strong correlation between endometriosis (and the other hormone-responsive issues I’m having) and unhealthy guts, food allergies/sensitivities, impaired estrogen metabolism and inflammation in the body. Oh, and throw in exposure to multiple hormone-disrupting synthetic chemicals on a daily basis, and you’ve got a pretty complete picture! By addressing these underlying issues, women can become symptom-free of endometriosis and measurably shrink their cysts and fibroids. Not to mention experience a myriad of other health benefits. And my doctor has many patients (past and present) who can attest to that.

I had some diagnostic tests done this past month and the results were quite interesting. An allergy panel blood test showed that I have delayed allergies (as opposed to immediate anaphylactic shock) to some foods; eggs, soy, yeast, peanuts, cashews, safflower, sesame and tomatoes being the primary ones. However, my “reaction score” was fairly low on all of them. My doctor feels the reason for this (and why I didn’t score on more foods) is because my immune system could be damaged in such a way that it’s not producing the antibodies the screening tests for. That makes sense to me, since I’ve dealt with chronic Lyme disease and Multiple Chemical Sensitivities for years, and they both can do big time immune damage. Basically, my impression of her hunch is that the odds of me actually having extensive food sensitivities are better than putting your money on the sun rising tomorrow. And that could certainly explain all of the IBS symptoms I have constantly.

The diagnostic stool analysis I took (which was so gross, I might add) showed that I have inflammation in the lining of my gut, zero healthy bacteria, and bacteria in my colon that cause a lot of unpleasant symptoms. The one exciting thing was I don’t have any yeast growing in my gut – a bloody miracle, considering I’ve taken antibiotics every day for the last four years to treat my Lyme!

However, the test I found the most interesting was my hormone panel – a urine test to determine how well I’m metabolizing and excreting hormones, and what my production levels are. The test showed that I’m not really metabolizing my reproductive hormones, which is caused by a genetic defect. That means I’m not eliminating estrogen from my body and it all just sticks around in there, being reused over and over. This is a pretty big problem, since all of the “band members” in my pelvis grow and multiply in the presence of estrogen. So does breast cancer. But I’m not even going to go there right now… Interestingly, I seem to have no problem metabolizing cortisol, because a crap ton of that stress hormone showed up on the test. Good news about that: my adrenals are VERY healthy. Bad news: excessive cortisol causes weight gain in the mid-section, impairs the immune system, and is an indicator of serious inflammation in the body. The last big thing the test showed was that my estrogen levels were on the low side of normal. Since all of my reproductive system problems are caused by too much estrogen, this was very, very interesting. Only hormones made in the body show up on the test…so to find the source of all this excess estrogen, we have to look outside the body. My test results and symptoms strongly indicate that my endometriosis, fibroids and cysts could very well be caused by years of exposure to hormone disrupting chemicals that accumulate in the body. Researchers have found over 50 different ubiquitous chemicals that either mimic the hormones in our body, or block our own hormones’ ability to carry out their functions. The list includes pesticides, plastics, phthalates…to name a few. Not to toot my own horn, but I’m what you might call an expert on this subject and have fastidiously avoided as many synthetic chemicals as possible for over ten years…so I still have not quite gotten over the shock that this problem got as bad as it did.

I will now turn the focus to what can be done. The treatment plan is pretty straightforward: 1.) Take a bunch of supplements and a little medication to heal my gut, cool the inflammation in my body, improve my detoxification system, and help me metabolize and excrete those estrogens!, 2.) Change my diet dramatically (I’ll talk more about this in a sec), and 3.) Become even crazier about avoiding hormone disrupting chemicals. Sounds easy enough, right? Sure. But that easy plan becomes increasingly more difficult when you’re talking about someone who LOVES food, loves to eat out, enjoys drinking socially, and who is incredibly busy. But since this could be one of the most important things I ever do, I need to get serious about it and really give it my all. And in order to do that, I need to get excited and challenged by the project. That’s where this blog comes in.

Now, let’s talk about the food…since that’s what you’re all probably the most interested in. Because this piece of the plan will be the most challenging for me (by far) and because posts about taking supplements are not all that thrilling, this Blog will focus primarily on the process of dramatically changing my diet, finding creative and delicious ways to prepare the foods on “my list,” monitoring any changes with my symptoms, posting my favorite recipes and tips, and all of the ups, downs, struggles, and triumphs in between! I’ll even try to throw some humor in there. :) Now for the dramatic changes to my diet I’m referring to…they’re as follows: 1.) Eat organic to minimize exposures to pesticides (which are hormone-disrupting) and other chemicals, 2.) Eliminate the five most common allergens from my diet (gluten, dairy, soy, eggs, and corn), 3.) Avoid all foods from the allergy panel that I tested positive on, 4.) Chicken, turkey, lamb and fish are the only animal proteins I can have…and those animals have to be free of chemicals, hormones and antibiotics, 5.) Eliminate all refined sugar and alcohol, and 5.) Lots of water and veggies!

After doing some research, I’ve decided to pull my recipes from a variety of sources, rather than follow one strict way of eating. My food plan will combine the philosophies of: the macrobiotic diet,the raw foods diet, Ultraprevention and Ultrametabolism (books by Mark Hyman, MD) and brilliant wellness chef Jeff Woodward. Oh, and my boyfriend promised to throw in his knowledge from culinary school and help me come up with creative meals I can eat. It’s going to be challenging for sure, but I just need to really believe I can do this. After all, it’s only six months of my life. But six months that could profoundly change all the months that follow. As my doctor told me, this is something that I just need to jump into with both feet. Which is exactly what I’m going to do…on January 9^th. Starting on that date will allow me to get through all of the holidays and my birthday…and still start 2012 off on the right foot! It will also give me time to prepare (literally and mentally), gather recipes, plan weekly menus, and get my supplement schedule all figured out. If interesting things arise between now and then, I’ll post about them. Otherwise, look for a post right before the 9^th to kick off this six-month journey! Oh, and if any of you want to try making any or all of the five dietary changes above, I would LOVE the company and moral support!

The Prequel to this Blog: My Background Story

I’m a mid-thirty-something woman with a strange affliction: I have an incredibly annoying rock band wreaking havoc in my pelvis.

…At least, that’s how I like to think about it.

It all started with Mick Jagger. In early 2010 (after about 18 months of dealing with steadily worsening menstrual symptoms) an ultrasound showed fibroids in my uterus and a 9cm cyst on my left ovary. That’s about the size of an average newborn’s head. I scheduled a laparoscopic surgery to have the cyst removed and biopsied; and while I waited to be operated on, the cyst caused me a great deal of pain. A close friend thought it might help to name the cyst, so I had something specific to direct my energy and anger at. She named it Mick Jagger. I still have no idea why she chose that name. But as random as it was, the name stuck.

Mick Jagger was excised and found to be benign in April of 2010. My symptoms improved for a couple of months, but returned about three months after the surgery. I returned to the doctor that December and was diagnosed with severe endometriosis. She recommended a cervical ablation (essentially cauterizing the endometriosis tissue) and I scheduled that laparoscopic surgery for February of 2011. During that operation, my doctor found two new large ovarian cysts. This time, they were growing inside and around both ovaries, and that whole mass was adhered to my pelvic floor and my uterus. My surgeon was unable to remove the cysts without risking destruction of my ovaries, so she just drained them. I was grateful she preserved my organs, but the surgery ended up yielding zero results. My symptoms never improved, and when I went back in for a six-month check-up, the cysts had grown back.

At this time, my doctor referred me to a more experienced surgeon and I saw him in the middle of October, 2011. For a variety of reasons, I’ve seen four top GYN specialists between then and the start of this blog (early December 2011). From these doctors I’ve learned that: I have Stage 4+ endometriosis (of four stages); my condition is so severe that it will certainly continue to recur until menopause; I need to try to space out surgeries as much as possible; my uterus is the size of a woman who’s four-months pregnant because of the fibroids; and I have almost no chance of conceiving naturally. A couple of the doctors recommended a medication called Lupron, which induces menopause in order to hopefully shrink the cysts and “quiet” the endometriosis. It would be a temporary treatment to buy me time between surgeries and make an operation easier when I do have one. For a number of reasons, I hated this option. But all of my options were terrible: 1.) the menopause-inducing medication, 2.) a full open surgery (laparoscopic is no longer an option because the disease is so complex and advanced) that would attempt to remove my cysts and fibroids, but there is no guarantee that the disease won’t recur immediately or my organs won’t get mangled in the process, or 3.) a hysterectomy – the only definitive solution…but one that would leave me needing hormone replacement for almost 20 years.

At this time, I named the rest of the band in my pelvis. My uterus is now the size of a cantaloupe, when it’s supposed to be as big as a lime…so I named it John Mellencamp. I then began to think of the endometriosis tissue and adhesions all over the inside of my pelvis and abdomen as annoying boy band back-up singers whose pop songs get stuck in your head for days. My boyfriend asked me how I knew the band was all men. I responded by telling him there was no way a woman would cause another woman to be in this much pain.

And the pain is chronic. Pelvic pain, cramping, searing lower back and hip pain, referred pain in my shoulder, difficulty breathing, horrific periods that are too close together, digestive problems, weight gain,  and constant pressure on my colon, bladder and diaphragm. Growing weary from the pain and symptoms, and after weighing my options for a few weeks, I scheduled a hysterectomy for the very end of December 2011. I’ve never wanted children (so it actually was a viable option for me) and I just didn’t want to face the possibility of semi-annual unsuccessful surgeries and recurring problems for the next 20 years. And as much as I hated the idea of hormone replacement (HRT) and am actually kind of scared of it, both doctors and women I know who have had hysterectomies told me that HRT really isn’t bad and I would likely be very happy with my decision in the long-run. But I never stopped feeling like the hysterectomy was just the “least terrible” option on a list of awful choices.

I have been dealing with a variety of health problems for the past 15 years, and have always been a huge proponent of holistic medicine – prevention-based health care that actually looks at the whole person in order to find the root cause of illness. So a couple of weeks ago, I had a lengthy appointment with an OB-GYN who practices Functional Medicine (essentially nutrition-based integrative medicine) and is a nationally-recognized expert on women’s hormones. She’s a brilliant physician whom I’ve known for several years, and I trust her implicitly. She explained endometriosis to me in depth, proposed an alternative treatment protocol, and told me absolutely every factor in both the “Have the Surgery” and “Don’t Have the Surgery” columns so I can make an informed decision. In addition, she made three keys points that I couldn’t stop thinking about after the appointment: 1.) My reproductive issues are manifestations of a much larger, more systemic problem that will need to be addressed whether I have surgery or not, 2.) I need to make sure I am completely gung-ho and ready for this surgery, because this is not an operation I can wake up from with any regrets, and 3.) The right time to have this surgery is when I feel like I’ve done everything I can…and only I can determine where the end of that road is.

I thought about little else for a week solid. I realized that I’ve never felt gung-ho about the surgery at all; what I was excited about was the prospect of alleviating my chronic pain. However, I couldn’t say with certainty that I wouldn’t have regrets. In fact, I had been concerned from the get-go that I would have them. Since I was young, I’ve always seen myself more as someone who would adopt children anyway, so I am at peace with the prospect of not being able to have children naturally. (Although, in the last month I’ve realized that consciously deciding not to have children feels infinitely different than having the option taken away from me.) But what I’ve realized is that I’m not ready to eliminate my body’s ability to make reproductive hormones, since I’m only 33 and would theoretically continue to produce them for almost 20 years. That’s what I was most concerned I’d have regrets about. As for the third point she made: Since I’d have to follow her treatment protocol either way, my decision to have surgery boils down to whether or not I’ve reached my absolute threshold of pain and frustration. After much soul-searching, I determined that I have not reached that threshold and can hold out a little while longer in pain if there’s a chance of me keeping my organs AND feeling so much better in the long run. I can still have the surgery at a later date if I so choose, so I figure I have nothing to lose…and so much to potentially gain.

So there you have it: How I came to make the decision to postpone my surgery and try an integrative treatment protocol for six months in an attempt to regain control of my health and heal my reproductive system. At the end of this half-year experiment, I’ll reassess. I’m going into this without any expectations or pre-conceived notions. I am fully aware that this approach may not yield the results I’d like and I could end up in the exact same place I am now. But if that’s the case, at least I can go into that definitive surgery knowing that I truly did do everything I could first...