A Check In and a Check-Up

I haven’t written in months. In part, it’s laziness, but in truth, it’s difficult to write daily about a chronic disease. Blogging regularly is a constant reminder of what’s wrong with your body, and that’s sometimes a bit too much for the mental and emotional health. Now, I’m not ignoring my endo. I take a pill every day, I strictly follow the endo diet, and I still end up on the couch with a heating pad — so there’s no way this isn’t a routine part of my existence, but I’ve been having trouble writing about it. It’s easier to order a taco without cheese, eat it, and move on with life than it is to order a taco without cheese and then contemplate how to turn that into a blog post about all the things endo has taken from you. Babies, mozzarella sticks, the ability to go through life without pain and bloating… there are a lot of things, and sometimes it’s overwhelming.

But, I guess that’s also kind of the reason I started this blog, because it is hard and there aren’t enough people talking about it. So, I’m going to try to post regularly again…but no promises.

I had my yearly gyno appointment two weeks ago. My surgeon has taken over these routine exams because he wants to be able to check in with me semi-regularly. (Sidenote: While I know this man has literally seen my insides, it was still awkward to have him do a pap.) Anyway, everything went well, and he said that my uterus is no longer tipped. It’s attached to my abdominal wall, but it was also deviated that way, and he said that it seems to have corrected itself post-surgery. While of course it’s always good to have your organs in the correct place, he said it’s also good because then if it tips back, it’ll likely be an indication that the endo is growing back.  So, thanks to my uterus, I guess?

 

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Continuous BC

I had an appointment today since I’ve been on the Seasonique for three months, and Dr. X wanted me to check in. I told him how terrible the inactive week was — though he reminded me that Seasonique’s off-week isn’t actually totally inactive, it does have a low dose of estrogen — and he said since I had such a bad experience, I should just skip it in the future! Hooray! Hooray times a million! I’m so happy. He’s even putting in a special note to the insurance company so I can refill it slightly earlier.

 

 

Rabbit Starvation

A few weeks ago, I was complaining (ok, I was full on whining) to my fiance — who is graciously and selflessly doing the diet with me — about how much I hated the endo diet, how hungry I am always am, how terrible I felt, and how badly I wanted a slice of pizza.

Fiance: I know it’s hard, and I’m sorry, but how do you feel terrible?
Me: I’m so cranky, and I’m constantly tired. My mind is foggy. I just feel bleh. And it’s really hard to be hungry all the time, no matter how much I’m eating.
Fiance: Maybe you should start keeping a food log so we can make sure you’re getting enough calories. What did you eat yesterday?
Me: A fruit and spinach smoothie with almond milk for breakfast, a huge bowl of eggplant and lentils for lunch, and the black bean quinoa thing we had for dinner.
Fiance: And the day before, do you remember?
Me: Another smoothie and some popcorn for breakfast, salad and two bean tacos for lunch, and the chicken stir-fry I made for dinner. See, I’m eating. I’m often stuffed after a meal, but then I’m hungry again in like an hour.
Fiance: I think you’re rabbit starving.
Me: ?????

Rabbit starving, it turns out, is a kind of malnutrition that early settlers faced when they tried to make it through the winter eating only rabbits. Rabbit is a very lean meat, and no matter how much of it you eat, it can’t sustain you because there isn’t enough fat.

The side effect of the endo diet is that you eat healthy. Take out dairy, red meat, eggs, animal fat, sugar, and gluten, and there’s very little left in terms of indulgences and junk food. So without even meaning to, I removed almost all of the fat from my diet, and it made me feel terrible.

Interestingly, it stopped me from losing weight too. The first few weeks, I lost weight quickly and easily, but then it just stopped, even though I was following the diet very strictly and had even added in some exercise. Then I went on vacation, and while I did adhere to the diet, I ate much less healthy. I ordered sandwiches on gluten-free bread with a side of french fries. I snacked on potato chips in the hotel at night. I had sorbet twice. I even had a snow cone and french fries for lunch one afternoon when we were at a county fair and my options were very limited. The strangest part (and what should have been a huge red flag) is that I lost about a pound and a half that week! In hindsight, we’ve decided that my body must have gone into some kind of starvation mode in those weeks when I wasn’t feeding it any fat, and when I went away on vacation, my metabolism revved back up.

If you’re wondering why this didn’t happen to my fiance as well, it’s because he loves nut butters. He puts a huge glob of peanut butter in his morning oatmeal, and often snacks on rice cakes with sunflower seed butter in the evening. He also has a jar of nuts on his desk at work and will sometimes grab a bag of chips from the vending machine. His higher intake of fat and his lack of hunger and symptoms is also what led us to conclude that I needed to eat more fat.

It’s kind of counter-intuitive, I know, I’ve been enjoying losing weight (the only perk I’ve found from endo!), so it seemed smart to eat healthy while I eat for my endo, but I guess there really is such a thing as eating too healthy. Anyway, I’ve now been eating a handful of nuts with my morning smoothie, am sauteing our veggies with olive oil and garlic instead of steaming them, have incorporated avocados into more of our meals, and have been more lax about using oils in my cooking. Since making this shift, I’ve felt much, much better and have continued to lose weight!

So, if you’re also following the endo diet, be careful about your fat consumption. It’s an important nutrient despite what the diet industry has drilled into our heads 🙂

Eating with Endo

Or, maybe that should say “Not Eating with Endo.”

The diet for endometriosis is quite restrictive, and honestly, pretty overwhelming. When Dr. X first said he thought my cyst was caused by endo, I immediately went home and started researching. The amount of information about what you should and shouldn’t eat is vast, and unfortunately, often conflicting. I ended up putting my trust in three sources:

  1. Endometriosis Resolved – This is a great website which nicely spells out what to eat and why. It’s my go-to resource, and I often refer back to it when I’m craving something and desperately want to cheat. (Read: “Ok, but how bad is this piece of cheese actually…” And then I remind myself about all the ways it can cause me pain and regretfully put it down.)
  2. Stop Endometriosis and Pelvic Pain by Andrew S. Cook – This book is a wonderful resource for anyone with endo. It covers everything from the mysteries and myths of the disease, to different surgery techniques, treatment plans, and other underlying health problems that can be associated. It also has a section on nutrition that I found very helpful.
  3. Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills and Michael Vernon – Written by a nutritionist in England, this book is very in-depth and informative, almost too much so. It’s heavy on science and and gives lengthy explanations about how different parts of the body interact with various foods an chemicals, which is great, but it’s sometimes a bit over my head. Even so, it was incredibly helpful in shaping my diet.

Ok, so after reading through all of these, I came to learn that I need to avoid:

  • Dioxins – An environmental toxin which may change the immune system’s response to unregulated growth of endometrial cells. It can also disrupt how hormones work. Amazingly, they did a study in 1992 with rhesus monkeys, and 79% of the monkeys who were exposed to dioxins developed endo, while those who weren’t exposed had very little or no disease!
    • To reduce your ingestion of dioxins, you need to avoid dairyfatty meats especially red meategg yolks, and bleached paper products. That last one is really important. Tampons and pads are bleached and treated with tons of chemicals. Make the switch to organic, chlorine-free feminine products!
  • Phytic Acid – Found naturally in wheat and soy, phytic acid can aggravate symptoms of endo and reduces the absorption of calcium and other minerals, which is especially important for endo ladies because we’re supposed to cut out dairy.
  • Prostaglandins – These are very complicated, and I still don’t entirely understand them. The Endo Resolved website calls them fatty acids, the Mills and Vernon book refers to them as “oil-based hormones,” and the Cook book (ha, cookbook!) just says they’re “compounds found in tissues that stimulate nerve cells.” So, I don’t know, take from that what you will. Anyway, from what I can gather, prostaglandins cause inflammation, contractions, and pain; however, that’s really their job. Our bodies need prostaglandins to ovulate, menstruate, and give birth. They are also involved in immune responses where we need that inflammation to fight infection. The problem comes when we have too many bad prostaglandins — or prostaglandins that have escaped the uterus and are running rampant in our abdomens! — as they then cause too much cramping and inflammation.
    • So, we want to avoid these bad prostaglandins which are found in saturated fatanimal fat, dairyred meat, and butter, while we increase our consumption of the goods ones, which are found in omega-3 oils and help to reduce inflammation.
  •  Inflammatory foods – It’s pretty obvious why we don’t want more inflammation in our bodies when we’re already growing unexpected tissue all over.
    • To lower your overall inflammation, avoid wheatred meatrefined sugars, and dairy.
  • Caffeine  – I know, I know, I love coffee and chocolate too. But caffeine can increase cramping and more importantly, increase estrogen levels, which we definitely don’t want since endo feeds on estrogen. Sorry, Starbucks lovers.
  • Alcohol – Alcohol robs the body of B vitamins, which are stored in the liver, and we need our livers in tip top shape so they can remove excess estrogen. The Mills and Vernon book states, “the risk of endometriosis was roughly 50% higher in women with any alcohol intake than in control subjects.”

And finally, the most controversial element, which I personally decided to avoid:

  • Phytoestrogens – Phytoestrogens are naturally occurring estrogens in plants like soy, wheat, flax seed, sunflower seeds, and many others. Some researchers think that by consuming this extra estrogen, we are feeding the endo and making it worse. However, others say that these weak plant-based estrogens actually block estrogen receptors in our bodies and are therefore balancing or even lowering the amount circulating estrogen. No one can really decide, which is frustrating. The Endo Resolved site says to avoid high levels of phytoestrogens, while still eating them in balance to block the receptors. Cook’s book encourages ladies with endo to eat phytoestrogen-rich foods for that blocking benefit. The Mills and Vernon book admits that no one conclusively knows what is best and shares two studies. The first study looked at Japanese women who consume a lot of soy and have low rates of breast and uterine cancer, but high rates of endometriosis, leading them to conclude that it’s unclear what the phytoestrogens do in the body. How can they reduce these estrogen-associated cancers but increase estrogen-fueled endo? In another case, a zoo started feeding their exotic cats a diet of 50% soy protein, and they became infertile, but the fertility was restored when they were switched back to chicken!
    • So, it’s kind of a personal choice. I’ve decided to cut out all soy and wheat since they are inflammatory and contain phytic acid as well. However, I will occasionally use flax seed when I’m cooking as it’s a great binder to replace eggs in recipes, and I feel the phytoestrogen from the flax is probably going to hurt me less (and maybe even help) than the dioxins from the eggs. Obviously, make the decision that feels best for you.

TL;DR

Foods to Avoid

– Dairy
: Very inflammatory, a primary food source of dioxins, contains growth factors and hormones, increases bad prostaglandins
– Wheat (Gluten): Contains phytic acid, promotes inflammation, and many ladies with endo also have a gluten sensitivity
– Red Meat: Contain growth hormones, bad prostaglandins, dioxins, and causes inflammation
– Sugar: Inflammation, inflammation, inflammation
– Coffee and Chocolate: both contain caffeine which can increase estrogen levels, interrupt liver functions, and is a phytoestrogen. Chocolate also has sugar, see above.
– Alcohol: Impedes the liver’s ability to remove excess estrogen
– Egg Yolks and Animal Fat: Dioxins are stored in the fat of animals
– Soy: Research goes either way on the phytoestrogen component of soy, but it also contains phytic acid. There’s a great article about why you should avoid soy on Endo Resolved, which you can read here.

Foods to Embrace
– Omega-3 Fatty Acids: Found in salmon, flax seed, walnuts, and leafy greens, they increase good prostaglandins which reduce inflammation
Fiber: Good sources include oatmeal, legumes, brown rice, fruits and veggies. Fiber helps decrease circulating estrogen levels.
– Cruciferous Vegetables: Broccoli, brussels sprouts, kale, cabbage, mustard greens, etc. These vegetables help metabolize estrogen healthily.
– Immune Boosters: Garlic, ginger, onions, carrots, rhubarb, legumes, seeds, and green tea.

Good luck and happy eating! 🙂

Seasonique – My Inactive Week of Horror

I never imagined I would long for active birth control pills, but good golly, this week has been terrible. Terrible. Terrible.

I just started crying because we are out of white rice. Issue #1 of the inactive week: Constant crying and rollercoaster emotions. Issue #2: Stomach pains, nausea, and loss of appetite. Hence the rice. I can’t bring myself to eat much of anything…which of course makes me feel lousy in its own right.

Add to that the wicked cramps that ibuprofen doesn’t touch, yesterday’s eight-hour headache, and my inability to sleep, and well, yeah, I can’t stand this.

My surgery was just over three months ago, and this is only the second period I’ve had, so maybe that’s part of why the cramps are so awful. (How long should it take to heal internally?) But it’s much worse than my normal periods used to be. It’s very light, so that’s nice, but usually I have two really painful days, and then the rest of the time, I just take some pain meds, and I’m fine. This time, I’m on day five of those really painful cramps, and I just want to scream.

Oh, and the hot flashes. I have a new respect for menopausal women. I don’t know how they deal with constant hot flashes.

I’m very aware of how out of balance my hormones are this week, and if nothing else, it reaffirms my belief that the Seasonique is otherwise helping me.

Sunday night can’t come soon enough.

An IUD and birth control pills TOGETHER!

Getting an IUD is what eventually led to my endometriosis diagnosis. After trying multiple pills and hating the side effects of all of them, not to mention the annoyance of remembering a daily pill, I had my heart set on an IUD. So when Dr. X said he’d need to remove my only two-month-old IUD to do the surgery, I immediately (and in hindsight embarrassingly) whined, “Nooooooo.” To which he replied, in true Dr. X form, “Ok, then I’ll slice across your abdomen and go in that way, and you can keep your IUD.” Needless to say, I let him take it out and do the surgery laparoscopically. And when he was done, with me still under anesthesia, he put a new one in, and I woke up not really knowing the difference.

Except that because my endo is so bad, Dr. X wants me on birth control pills for the next two years (at least) to suppress my ovulation, which even hormonal IUDs don’t do. I have a Skyla and since the hormone levels it releases are minimal, he says it is safe for me to keep the IUD while I’m taking the pills. He prescribed Seasonique, so I’ll only have a period four times a year, and because it has the same progesterone (levonorgestrel) as the Skyla. In the past my body has not reacted well to synthetic hormones, so I asked if I could take the same one since I seemed to be tolerating the Skyla, and Dr. X agreed in a it-doesn’t-make-any-difference-to-me-so-we-might-as-well kind of way. I wholeheartedly believe it pays to research and advocate for yourself.

Speaking of which, in all my research, I have found very few accounts of people also having an IUD while taking pills. Dr. X says the IUD should help with localized symptoms, mostly cramping (though that’ll be a post of its own because I’m pretty sure the IUD is giving me worse cramps), and the pills will stop ovulation, so I understand why he’d treat my endo with both, but still, I’m curious…is anyone else out there on both? Or do you know of anyone on both? Have you heard of treating endo with an IUD and pills?

Ten Tips for Laparoscopic Endometriosis Surgery

 This is not a fun surgery, but it’s definitely not the worst (or so they tell me I’ve only had the one), and if you prepare beforehand, it’ll be that much easier. Here are my ten tips for making your surgery experience the best it can be:

  1. Get a buddy – A spouse, a partner, a best friend, your mom, a sibling, it doesn’t matter who, but you’re going to need someone, and not just to drive you back and forth. The first night, my fiancé had to literally pick me up out of bed every time I needed to pee. My abdominal muscles just couldn’t do it. In the following days, hopped up on oxycodone and still in pain, I needed him to help me dress the bandages, change my clothes, bring me food, etc. Every body responds to surgery differently, but it’s still better to have a trusted helper for at least a day or two.
  2. Where a comfy dress to your surgery – Though I repeatedly read that I should wear loose pants or drawstring shorts, I decided on a sundress, and I’m so glad I did. My abdomen was so bloated that my clothes didn’t fit for a few days. I looked months pregnant. My fiance’s gym shorts were even too tight. It was nuts…and so uncomfortable!
  3. Buy new undies – Along the same lines, your regular underwear aren’t going to fit. The hospital gave me a super high-waisted mesh pair, but even so, you’re going to want something big and high for the coming weeks because your incisions are likely going to fall at about your panty line, and you don’t want the waistband constantly rubbing your stitches. And remember, you’ll probably be a bloated balloon for a while too. Size up!
  4. You won’t be able to pee, but you’ll bleed – No one warned me that I wouldn’t be able to pee afterward. They put a catheter in during surgery, and apparently it takes a while for the plumbing to restart after that. For the first couple of hours, my bladder was painfully full, but I couldn’t go. A nurse assured me that this was normal, but still, I’d have liked to know ahead of time. Also, you’ll bleed and spot for hours or days, depending. Hospital pads are huge and bulky, so you might want to bring your own.
  5. Get a heating pad for your shoulder – When doing laparoscopic surgery, the surgeons have to inflate your abdomen to see what’s going on, so they pump it full of gas, and it’s impossible to remove all of it. The gas travels up and creates intense shoulder pain. Everyone told me it’d be worse than the incision pain, and I didn’t believe it, but goodness gracious, it was the worst. Pain meds don’t help, but moving and heat does, so get yourself a good heating pad, or microwave a sock full of rice. You’re going to need it.
  6. Take your meds or you’ll get behind – I’m not one to promote highly addictive pain meds, but don’t be a hero, take them. I was dumb and thought I could handle it at first, but I couldn’t and then I was so far behind that it took hours and hours to get the pain down. Take your meds as scheduled the first couple of days and then slowly wean yourself off.
  7. Walk, walk, walk – Getting up is painful, but walking is glorious. It helps with that pesky pain in your shoulder, and it just made me feel better overall. As soon as you feel strong enough, get up and walk, and then keep doing it often.
  8. Appreciate the pillow – Have a small pillow with you at the hospital, so you can put it between your sore belly and the seatbelt on the ride home. I used a rolled up towel, which also worked. Anything to keep the seatbelt off of your incisions. A small pillow also comes in handy when you’re trying to sit up. Hold it to your abdomen to brace your muscles, and it’ll hurt less.
  9. Listen to yourself and your body – If you think something is wrong, call someone. Better to be safe. My discharge nurse never told me that I could remove the bandages, so for 10 days, I had band-aids covering my four incisions. I have very sensitive skin and ended up with wicked rashes and sores from the adhesive. When I went to get the stitches out, my doctor was shocked. I was supposed to have left them uncovered after day three! He said, “You should have called. If something doesn’t make sense or is hurting you, always call me.”
  10. Don’t rush it – I was told that I could go to work after one week and that I should be back to normal after two, but it took me almost four to feel fully 100%. I napped constantly, was dizzy for nearly two weeks, and was in a general state of malaise for most of the month (I was just diagnosed with a chronic illness after all). And that’s okay. Everyone is different, but I read lots of accounts of other women online who were also exhausted and sore and dizzy for weeks longer than their doctors said. Once I read that, I stopped pushing myself. I embraced the nap and slept-in each morning, and before long, I felt remarkably better. Listen to your body, and give it sleep!