There’s a saying that there are two kinds of people. People that eat to live and people that live to eat. Well I’m the latter. When I was young I would spend the entire day asking my mother what was for the next 2-3 meals. It drove her nuts. I think I had that whole Bethenny Frankel thing down before she was a 4th tier celebrity. She explains in one of her books that your diet is like a book of checks and balances. At 6 I wanted to know what was for the next meal so I could plan and spend my calories accordingly.(without knowing that’s what I was doing). For example: if we were having spaghetti for dinner, then I wouldn’t want a carb heavy lunch or breakfast. I’d want a can of corn or a lean cuisine. (I was a weird child. Hand me the vegetables over the cookies please). Though, I wasn’t exposed to lots of green things growing up and no one in my family jumps at vegetables so who knows where that gene came from. My parents don’t like the smell of brussel sprouts or spinach so until college my main source of vegetables was either chopped up in sauces, in Chinese takeout or a can of carrots or corn. I remember going to Chinese restaraunts and always eating the peas my brother picked out of his fried rice. Peas to this day are still my favorite.
I’ve spent years adapting my favorite comfort foods into healthier options that I don’t feel as guilty about eating. I make pasta carbonara with no cream and LOADS of garlic, peas and onions. I occasionally cook my own Chinese food and if I’m eating hamburger helper on a day where I’m in PMS hell and I just want the comfort food I throw in peas, carrots, onions and tomatoes. Volumetrics I believe is what that is called.
So while I do eat healthy for the most part this endometriosis diet caught me off guard. There were like only 30 ingredients on the “okay to eat list”. Ummmmm… where’s the Chinese food? Where’s the pasta carbonara? Where’s the steak and potatoes and where’s the bag of popcorn I can eat while watching a movie?! I majored in cinema studies and have spent the majority of my life when I wasn’t in ballet or jazz classes eating popcorn in a theater or in front of the TV watching a good (or bad) movie. Sigh.
So here I am. I’m on a mission to help myself and other endo sufferers find healthy non painful substitutes for their favorite foods. Macaroni and cheese? I got you covered girl. Chinese.. I’ll figure it out.
I begin the Whole30 with my endo restrictions on Monday. And seeing as how any time I eat all the bad food I wind up having chest pains a day later, I’ve decided this change needs to be for GOOD. My coworkers thought I was just being some health nut till I explained to them that food like Popeyes gives me pain… chest pain. That seemed to elicit some understanding and support. So I’m looking at this weekend as a kind of last meal. One big long last meal with all my favorite foods. Chinese, tacos, queso and red wine. It WILL result in chest pains. I’m already experiencing them. But for me, I live to eat and I will enjoy every last bite.
First off to everyone on the Whole30 right now bitching and moaning about how hard it is and how miserable they are .. STOP. Seriously. You get to drink coffee, green tea and eat bananas. You can have pork chops, steak and sugar free bacon with a side of potatoes on the regular.You can have a handful of dried fruit while running out the door. You even get to eat those fancy little RX bars and Larabars on days where you are in a time crunch and running out the door to the gym. I .. do not have that luxury. Not only will I be giving up sugar but I will ALSO be eliminating caffeine from my diet. Talk about hating life. And those cute little healthy RX bars and Larabars.. yeah guess what.. they ALL contain dates! ALL OF THEM! Dates are on the ENDO no, not ever, not in your dreams list. I went to Whole Foods last night and the entire protein/power bar aisle was just laughing at me like out of some movie where the person shopping is having a meltdown. Awesome.
Rant Over. I do think everyone doing the Whole30 is a strong individual doing great things for themselves inside and out. I just had to complain about my circumstances for a hot second. Apologies and congrats to you all for making it this far.
So … Getting back to business. After some phone calls to my Gastrointerologist, 2 pages of questions and a call to a nutritionist.. this is the Endo approved whole30 shopping list I have come up with for the next 30 days. Since red and sweet potatoes are on the MODERATION list I debated cutting them out for the whole 30 days. However seeing as potatoes will be my only carb-y source of carbs.. (you know what I mean by that) … I will be eating them on days where my cravings are going wild for rice, potatoes, bread etc.
I cut out all the meat other than turkey, chicken and fish.. though I don’t eat fish so I might as well put a scratch through that.
Beets are out as well as fruit juice and dried fruit.
Kombucha? Yeah right. Cacao? No way Jose.
Bananas, dates, figs, mango, papaya and plantains are all out. Grapes, oranges and watermelon are on the moderation list…but I will probably avoid them all together until I start reintroducing foods. Not really watermelon season anyway. Plus I could live without most fruit to be perfectly honest. Give me all the vegetables instead.
Based on my Usain Bolt sprint to the bathroom after having pumpkin spice coffee and a similar incident years ago in college after drinking a chai for the first time.. I am going to cut out the spices I suspect may be the culprit during the Whole30 and reintroduce them after. So buhbye cloves and cinnamon. See ya in 30 days! Let the meal planning begin!
Ok folks. This is a hard one for me to come to terms with . When it comes to my mornings you may as well call me Lorelai Gilmore.. I need coffee in an IV. COFFEE COFFEE COFFEE! If I was doing the proper Whole30 I’d be set up for success seeing as I already prefer my coffee black or the occasional bullet coffee. But guess what. Endo diet does not allow coffee or caffeine. When I first met with my GI doctor we agreed to cut back to 1-2 cups of coffee a day. But really if I want this experiment to work properly I just need to cut it out cold turkey. So I will be spending my next few days coming to terms with and reducing my caffeine intake. I have some green tea in my arsenal in my desk but I will try my best to avoid it if at all possible.
So long sweet elixir of life. You will be dearly missed.
Okay .. first thing is first. I have to make a meal plan in order to set my self up for success on the Whole30. But here’s the issue. I also need to stick to my Endo diet at the same time which means .. even MORE restrictions. So lets talk about the endo diet. Here is a list of foods okay to eat.
So far not so bad for me. Lots of veggies, chicken , some CHEESE YAY! , steel cut oatmeal, nuts and almond milk. Healthy. Now lets talk about the foods in moderation and ABSOLUTELY NOTS!
I am not going to even lie. When I first got this list I just about cried. I drank red wine REGULARLY. Ate popcorn REGULARLY. No more chocolate! No bananas! NO FIGS! No soy of any kind. Luckily I was a healthy eater already so the only major changes I had to make were my horrendous nightly snack habits and red wine drinking. Thank GOD I was allowed tequila, vodka and white wine though. Although finding a white wine I liked was an adventure on it’s own. But I followed this diet I would say 90% of the time when I first got it and felt GREAT! I was falling asleep for the first time in years without sleeping pills. I had more energy. I was waking up before my alarm would go off. My mood increased.
… and then Thanksgiving hit. I had splurged and bought myself some pumpkin pie spice coffee.. which FOR THE RECORD! did not contain any pumpkin of any sorts in it which is off limits on the endo diet.. just the spices. Within minutes of drinking the deliciousness I was running for the bathroom faster than Usain Bolt. I told my GI doctor this and we got in a bit of a tiff because he had told me pumpkin was not allowed and shame on me. To which my response was .. but there was NO PUMPKIN!. And if that’s the case then shouldn’t all gourds be off limits?
That was the moment that I knew this diet needed more research. More options than just this tiny list for the rest of my life. What about quinoa, nutritional yeast, acorn squash, millet? There had to be more options and I was on a quest to find it.
Unfortunately…. I got wrapped up in the holidays and all the Christmas movies. I drank red wine, ate chicken tettrazini, sugar cookies and all the bad things. I was back to needing sleeping pills, feeling sluggish and having cramps at all hours of the day. And that’s when I knew I needed to hit the RESET button.
Enter the Whole30. Considering the Endo diet is pretty much 85% the Whole30 I should have a fairly easy transition. It’s time to cut the bad late night snacking habits. And it’s DEFINITELY time to reintroduce all the healthy foods that one with endo can eat that are NOT on this list. So here I go people! Here’s to hoping that through my process, we can pinpoint the triggers and expand the Endo food list to more than a mere blip!
Wish me luck!
Off I went to my umpteenth and hopefully final doctor. My endometriosis surgeon had recommended a GI Doctor. Of course he wasn’t just ANY GI doctor.. he was THE GI doctor. He was the one who had made the connection between GI issues and Endometriosis. He even invented this fancy EKG looking machine that can see inside your bowels. So he stuck me in a dark room in a comfy chair and stuck these electrodes all over my belly for an hour while it read my bowel activity. As he read through it he looked to be in shock. He said “It looks like the endo surgeon got it all out. ” You could tell this is a very rare occurrence for them to remove it ALL. In most cases some remains and it comes back. Well news flash.. it can always come back regardless I found out. After many meetings with my endo doctor making some analogy about some lake and leaves and alligators and cleaning up said leaves… it all finally clicked after talking to the GI doctor..
So here it is ladies and some concerned husbands/ boyfriends… ENDO IN A NUTSHELL!
Your uterus is like a lake. And your bowel is the tree sitting on the edge of this lake .. dropping leaves in the lake when the wind blows. And the leaves are the endometriosis.
Read through that a couple of times. It made zero sense to me at first . But now I get it. The bowel spasm-ing was what was causing the inflammation around my lung causing all those “pleurisy” attacks! In most cases the pain is centralized to the stomach and why it takes so long for most women to be diagnosed with endo. It appears to be a GI problem and not uterus related.
My endo doctor went through and cleaned up all the leaves.. so … YAY! ENDO GONE! But guess what.. the leaves can fall again. All it takes is a disturbance from the tree. And guess what causes that disturbance? FOOD! Red wine, cheddar cheese, chocolate… POPCORN! All the yummy yummy foods I liked to snack on at night.. I was told to stop eating them … immediately.
I did good for a while. I was sleeping great, had more energy, felt fantastic. I was still allowed tequila , vodka and white wine so at least I could drink. I stuck to my diet guidelines for a while.(Stay tuned for those.) But then the holidays happened. Red wine, hot chocolate, pumpkin pie.. I ate it all. And then the pain started again. So now its the New Year. I’m waking up in hot sweats again and terrible stomach cramps that cause me to cry. Enough is enough.
So that’s the beginning of my story. Follow me as I gear up for the WHOLE30 to eliminate the bad foods and slowly introduce the good foods to see what’s causing ME the pain. Remember I am no dietitian .. and no two bodies are alike. So what works for me may not work for others. But hopefully this blog can help at least one other person embark on a food mission to see what does and does not work for them.
And stay tuned to see how my GI doctor feels about all this. I am definitely not one for fad diets.. But this seems like a healthy well balanced diet that can help pinpoint what foods are causing the pain when I slowly reintroduce them. Not to mention.. the endo diet is about 85% the WHOLE30 anyway.
Thanks for reading and stay tuned to my Whole30 experience and reintroduction of potentially problem causing foods!.
After my latest so called “pleurisy attack” I was encouraged to find a specialist. So off I went to find the right doctors. First I had to make an appointment with my regular doctor. She then referred me to a pulmonologist who I spent many hours with over the course of the next 6 months. I spent the next 6 months being poked and prodded. I had every blood test imaginable done, CT Scans, MRIs, Xrays and some test where I blew into a tube. She thought maybe I had an autoimmune disease so I was tested for all of those. You name it.. I probably got tested for it.
On my last visit to my pulmonologist I mentioned how the pain seems to be the worse about 9 days after the start of my period then slowly tapers off… and just like that… BAM! A light bulb went off over her head. We spent the next 15 minutes in the exam room silent while she checked out some on line doctor mumbo jumbo. She then turned to me and said I think it may be .. insert some fancy name…. endometriosis in your lung. I sat there thinking 2 things. 1. A DIAGNOSIS … FINALLY! 2. no no no… wouldn’t I know if I had endometriosis?
Basically what I had was catamenial pleurisy .. which in some cases could lead to catamenial pneumothorax.. which is INCREDIBLY RARE…and can lead to your lung collapsing every month during your period. My doctor told me to come back in a year to check the nodule they had found in my lung during one of the CT Scans. ummmmmm…. #NOPE! If this could even remotely lead to my lung collapsing I was not about to sit around and wait for that to happen. So … off I went to find yet even more doctors.
After calling around some of the BEST doctors recommended in Houston I had a meltdown. Even some of the best endometriosis specialists did not want to take me on as a patient. They kept telling me it was a lung issue and to see a pulmonologist. Well surprise! Most pulmonologists don’t have experience with Endometriosis. And most gynocologists don’t have much experience with the lung. So there I was… diagnosed and stuck. No one could help me. What was I supposed to do .. sit around and wait for my lung to collapse to get help?! Sorry but not an option.
Luckily the husband of my mothers good friend used to be THE premier Houston gynecologist. After a few phone calls we had found someone willing to help. I soon had an appointment with the thoracic surgeon who has dealt with 3 previous cases of this along with THE premier endo surgeon in Houston. And guess what? They worked together regularly! HUZZAH! They both KNEW what I had! RELIEF. Then reality . I have endometriosis. I need surgery . After my appointment with the endo guru… I received a call from the office 2 days later wanting to schedule surgery . Wow.. they work fast I thought. After a few dozen calls between both offices we had set a surgery date. I would be operated on by both surgeons to remove any endo they could find from lung and uterus area at the same time.
So there I was.. August 8 2016.. on my period… and about to be operated on in a multitude of places. All I could think was being completely naked while having 18 medical students watch the surgery of the “rare disease” like out of an episode of Greys Anatomy. Luckily for me the anesthesiologist doped me up pretty good before being wheeled down. They could have cut off my arm at that point and I wouldn’t have cared.
I came out of surgery and had to stay overnight in the ICU as per orders from my thoracic surgeon to make sure my lung didn’t collapse over night. Both doctors said the surgery went well. No Endo was found near my lungs. I was told I had incredibly healthy strong lungs in fact. So then .. where was the lung pain coming from I thought? I went back for my post op a week later only to be told I needed to see a GI specialist next. WHAT!? I thought you got the endo out? But as I was soon to find out… my adventure with endo was just beginning. They got the endo out but now I had to keep it out. siiiigh … so off I went to meet the GI doctor…
After surgery on heavy meds
scar under armpit from laprscopic lung surgery
Back in 2011 I was 27 years old , in fantastic shape and lived in NYC working in Reality TV Production. While most people find that to be a dream job it was… well.. not. The stress over not having a bobby-pin on set 12 seconds ago was enough to cause severe panic attacks while 14 people continued to traipse through set and make sure you knew how unhappy they were said bobby-pin was late to set. All this while in my head I was having to readjust the entire day schedule including lunch delivery, talent call times, figuring out where a potential second meal for 30+ people would get catered from on a minutes notice and readjusting tomorrows ENTIRE schedule to accommodate a 12 hour turnaround since we would hence wrap the day late thanks to said late bobby-pin. #livingthedream people.. living .. the… dream.
I only mention this because one day on set .. in the middle of nowhere and in the dead of winter mind you .. I had severe chest pains. While mid discussion with my crew I got a stabbing sensation near my heart, my left arm went numb and I couldn’t catch a deep breath. I grabbed my chest and leaned forward trying to catch my breath. My crew stopped dead and asked if I was okay. Seeing as we were on a schedule… we didn’t have time for me to have a heart attack. So I just powered through it and went back to work . The pain shortly subsided and I felt back to normal. I had chalked it up to just a random pain. Stress. Cold. Disease. (it should be noted we were also filming a show about exterminators so were regularly around cockroaches and rats.) Again people… living the dream.
Fast forward 10 months. I had decided to make a change and had moved back to Houston to get into the oil and gas industry. I was staying at my parents house while looking for an apartment in Houston. One night I was laying on one couch while my mother was on the other and again I started having severe chest pains. My left arm went numb and tingly and I couldn’t take a deep breath without having a stabbing pain near my heart. After an hour of this nonsense my mother and I decided it was time to go to the ER. While I am not one to be a hypochondriac I wasn’t quite convinced I was having a heart attack, but I also refused to die of one while sitting on my moms couch while watching some terrible reality show.
So off we went to the ER. Of course after telling them my symptoms they put me in the front of the line , took me back , gave me an EKG and an xray. While waiting for the doctor to come back in and diagnose me.. the pain went away. Just like that. Poof. Gone. I could take a deep breath again. They told me it was just a pleurisy attack. The lining of my lungs had probably been inflamed from a cold and was rubbing against the lining of my heart. They gave me a really painful anti-inflammatory shot and sent me on my merry way.
Over the next 4 years I had these random “pleurisy attacks” fairly regularly. I would luckily feel them coming on .. pop some anti-inflammatory pills and go back to work thinking nothing of it. My stress level was non existent compared to my previous job. I was healthy, spinning and doing yoga daily. Until early one day in January of 2016.
I was at work recuperating from a cold. I popped a mucinex and within minutes did not feel at all right. I began to feel dizzy, lightheaded and just plain out of it. I told my coworker I had to leave. By the time I got home and laid down I had another BAD pleurisy attack. So bad I had to have my mother come drive me to the Urgent Care because my left arm was too numb to drive. I figured I just needed another anti-inflammatory shot. After explaining how often this had been happening the doctor suggested seeing a specialist. So off I went to find a doctor…..