The Little Things

Hello lovelies,

After a rough few days, physically and emotionally, I've been thinking today about the things that make it all bearable. Sometimes it's not that I need everything to be magically perfect (though that would be nice), but just enough that I can at least get through my day with some patience, strength, positivity, and dignity. Some things, though not "medicinal" in the typical sense of the word, seem to make it all better. Here's my list:

1. Good Perfume. Everyone's opinion of what consititutes "good" perfume will vary, but for me, "good" perfume is excellent quality, not too flowery, not too musky, and nothing that will skunk in too short a time. My personal favourites include Burberry Touch, Chanel Chance Fraiche, and Lalique original. (Anyone who has seen my vanity table can attest to what can only be described as a "serious perfume problem." Sigh.)

As an aside, I do find that perfumes with a good vanilla note seem to settle my stomach on those lovely nausea-inducing endo days. I heartily recommend Burberry Brit for this.

2. ManicureI actually don't enjoy trips to the spa. I know, I know, there's something wrong with me - I just find them to be a bit impersonal, kind of busy, and just generally not a pleasant experience. The exception to the "no spa" rule for me is the Bayview Village Spa at Bayview Village Mall, but since I definitely can't afford that too often, that's more of a special occasion outing.

However, there is something to be said for having well-manicured nails. I don't know if it's the simplicity of the actual action itself, or something else, but I find the process of doing my nails to be calming and a bit cheering. I did mine last night, and while I still don't feel super-great, it did cheer me up and give me something else to focus on besides pain and blahness.

3. Hot Tea
I love tea. I love it so much that I have a hutch full of cups & saucers, and two shelves of tea. (The less said about the number of tea pots the better!) The smell of it brewing, the tangy, biting first sip, the warmth settling in my body ... what's not to love about a good, hot cup of tea? (Emphasis on "good" - oily, gross tea is not allowed in my house, thank you very much.)

My personal favourites include: Tetley's Orange Pekoe, Barry's Irish Blend, David's Nettle Tea (excellent for menstrual cramps!), David's Organic Peppermint (excellent for nausea!), and anybody's Irish Breakfast. To each their own, but I stick to either caffeine-free or very, very low levels of caffeine. (Some herbals do have low levels of caffeine in them.) I find caffeine makes me feel rotten, cranky, and way too jumpy - not exactly the "relaxing" vibe I'm going for.

4. Water, Water, Water!
I've posted before about how much I love water, but I'll do it again. It's amazing what a little hydration can do for you when you're feeling off. Refreshing, revitalizing, and a great way to help your digestive system at the same time. It's probably not the first thing that comes to mind, but it might help you out. I've been trying to put back extra water these last few days, which I think has been very helpful. Good for the skin, the bowel, the lips, the brain ... good for you all over.

5. Reread an Old FavouriteIf you're not a reader, replace "reread" with "rewatch," if you prefer movies. (Actually, I like both!) Since we don't have a tv in the bedroom (I refuse to have one, sorry FH!), for me curling up in bed means quiet time with a book. When I'm feeling out of sorts, I find it hard to concentrate on anything in particular, so reading something new is out of the question. What a great chance to reread something old and beloved! This week I reread Lawrence Hill's "The Book of Negroes" for about the 5th or 6th time. It's a beautiful, heart-wrenching, and totally engaging story, by the way, so go read it! 

6. Hot Shower
A hot, steamy shower is one of my absolute favourite things. We literally had to put a clock in the bathroom recently so I would stop losing track of time (and using up all the hot water). It's absolutely nothing at all for me to have a 30-minute shower without even realizing it - and yes, I know that's a huge waste of water, and yes I do feel badly about it. I find it so therapeutic though, especially right before bed.

Personally, I get a lot a lower-quadrant and lower-back pain with my endo. Setting the shower head to massager and letting the hot water hit those spots is really helpful. There's something about it that is stress-relieving, too. After, I love grabbing a pair of fluffy socks and my cosy sweat pants, and curling up with a book or movie. Renewing and pain-easing.

7. Glass of Wine
I know the endo diet calls for "no alcohol," but I just really can't stick with that, to be honest. I've had to cut out gluten, dairy, and red meat; I've chosen to cut out soy; I've chosen to reduce white sugar and caffeine; I draw the line at wine, folks - at least at this point.

It's funny, but I find that even half a glass of wine is good for settling my stomach, and of course it helps relax muscle aches as well. Half a glass before bed can do wonders for me, and as a person who just genuinely enjoys wine, it's nice that I can get some medicinal benefit out of something I'd be consuming anyway. Bonus!

Shameless wedding plug: the vidal from Willow Springs Winery in Stouffville, Ontario is fabulous!

Ok, so what's on your list? What are the little things that can make a rough day a little easier? I'm sure I will be back to add more later, but I'd love to hear from you!


Peace & Joy,
Cher

Apologies! Recipe!

Hello lovelies,

I have been sadly MIA for a few days; I'm sorry! Mr Cee tore some ligaments in his ankle last weekend and things have been extra-busy lately. I'm cosied up with my PVR, which is blissfully full of Criminal Minds reruns, and I can't stop thinking about the gorgeous salad I ate today.

Let me preface this recipe by:

1) giving serious shoutouts to my girls (lovely bridesmaids) who were willing guinea pigs in my food experiment get-together last night. Cheers!

2) making a note to anyone tempted by this recipe: As I discovered today, this salad is best made the day before you serve it. The taste is way, WAY different today than it was yesterday; by "different," I mean "crazy better."

3) admiting that this is not an original recipe, but something that I found online, and tinkered with after deciding I did not like the way it turned out at first.

Ok, so without further ado, I give you: Summer Chickpea Salad

Summer Chickpea Salad

1 c sliced green olives
3-4 zucchini, quartered and chopped (not too big, but not too small either)
1-2 cans of chickpeas, drained and rinsed (amount depends on how much you LOVE chickpeas!)

Dressing:
1/3 c olive oil
Scant 1/3 c white vinegar (adjust for your own personal taste)
2-3 healthy splashes red wine vinegar
1-2 tbsp dried basil
Sea salt to taste

1. Combine olives, zucchini, and chickpeas in a large bowl.

2. Combine dressing ingredients in a small bowl with a lid. Put the lid on the bowl (tightly) and shake the bowl hard. make sure to turn it upside-down and mix thoroughly.

3. Pour the dressing on and toss the salad to coat well.

4. Cover the salad and put in the fridge at least a few hours before serving the salad. I strongly recommend letting it chill a full day before you serve it.

5. When you're ready to serve it, remove it from the fridge and stir it well.

Enjoy!

I finished eating some (ok, a lot) about 2 hours ago, and I literally have not stopped thinking about it since. Last night, my reaction was "meh, it's ok." So for my personal tastebuds anyway, giving it the time to settle so the flavours can really come together was massively important.

What if you aren't into olives? Well, first have your head examined, crazy person! Ok. If you don't like olives, you could certainly put in something else instead, but I would recommend trying to stay in the salty-flavour range, to keep the taste balanced.

If you decide to try it, let me know how it goes! If you make any changes, I'd love to know what you did and how it worked out for you.

This salad is Endo Diet-friendly, has good protein from the chickpeas, and is a nice change from the typical leafy salad. I think you could probably serve this on a bed of cooked and cooled rice or quinoa, or on a bed of baby spinach. The options are endless!

Product Review - Mad Mexican

Last post I talked about the Sol Cuisine burgers and the O'Doughs buns - both of which I've been eating all week, so they were definitely a huge hit!

Another company we learned about at the Gluten-Free Garage is one called Mad Mexican. They make tortilla chips and a variety of dips, such as salsa and guacamole.

Mr. Cee is a huge guacamole fan, so we bought a bag of tortilla chips and a tub of guac. I was impressed with how few ingredients each product had; it was all real food that was easily recognizable and also pronouncable. Always a good sign!

The tortilla chips had a very satisfying crunch to them. They were crispy, not overly salty (just enough to add a nice flavour) and though there were a bit thin, they were sturdy enough to survive dipping in the guac.

The guacamole was a fabulous colour - it looked really fresh, and I loved the consistency of it. Not too lumpy, not too runny; perfect for dipping and scooping. Usually my pet peeve about guac is that folks tend to go overboard with the cilantro, but I found Mad Mexican's guac to have a great balance to it. The cilantro flavour was there, but it wasn't overpowering; it blended very well with the other flavours. Again, with just a few natural ingredients, a fabulous flavour was produced. (Why do other companies need to put so much crap in their food? Is it really better to have 15 ingredients people can't pronounce?)

I wish we had've bought more bags of the tortilla chips, as we still have some guac left but nothing to dip. We've had to open a bag of "other" tortilla chips (which used to be my fave but I think just got bumped!) and it's just not the same.

Two big, gluten-free thumbs up to Mad Mexican!

As an aside: I got asked the other day why I'm focusing so much on gluten-free food, if this blog is supposed to be about Endo and endo-wellness. Aside from the fact that my endo has made gluten-free (and now dairy-free, and a few other things) living a necessity, I believe in the link between wellness and food. Didn't your mother tell you, "You are what you eat"? Following the Endo Diet and eating as cleanly as possible has helped me achieve better overall health, and has helped improved my Endo symptoms.

Additionally: Going gluten-free and/or following the Endo Diet can be really, really daunting. "What do you eat?" is something I get asked all the time. I've been there; it's not easy to get started. I focus so much on food because it's a huge part of our lives, it can play a huge role in our wellness, and it can be really intimidating to try to find products that taste good, meet the dietary requirements, and hopefully won't be too hard to find.

I won't always focus this much on food, but it's something I can't ever ignore. I hope at least some of you are finding the information useful. If not, keep checking back - eventually I'll get to other topics. ;)


With peace & joy,
Cher

Dairy Attack!

I meant to post this on Sunday, but this is the first chance I've had to check in on things here.

Anyway, as you know, I've cut out dairy entirely these days, in keeping with the Endo Diet. On Sunday, my mom and I went out for lunch at the mall after church, to do some walking around and get an idea of the new styles for spring. (And I bought the most perfect navy blazer - but I digress....)

We went to Moxie's, which has a good handle on gluten-free food prep. We shared a Santorini salad, which is a salad of greens, tomatoes, olives, and boccaccini cheese (hold the croutons please). I figured I could eat around the boccaccini, since it's not like gluten for cross-contamination (for me, anyway).I'd forgotten that the salad also has a generous sprinkling of feta cheese all over it. Sigh.

I felt too stupid to send it back, since it was my own fault anyway. I thought the little bit wouldn't matter. I tucked in, and about 30 minutes later, wasn't feeling so well. A couple of uncomfortable trips to the bathroom later, I was official Not Well. Lovely.

For me, this was my body's official statement: No More Dairy. Not even a little, tiny bit. No eating around it, no little tastes here and there. No More Dairy.

It's worth noting, as well, that following this dairy attack, I had tailbone Endo pain and sciatic Endo pain for the first time in nearly a month. That night, I slept terribly, and was very bloating and uncomfortable the next day.

Some might say this is a coincidence, but I find that laughable. To me, this is proof of what my body needs. It's not easy, saying goodbye to more food I love, but why keep around something that doesn't love me back?

Moving forward, I am being much more careful about reading labels and sorting out ingredients - even "may contain" products are out. Sad? Maybe. But there isn't anything I wouldn't give up now, if it means feeling better.


With peace & joy,
Cher <3

PS: Shout-out to Tevanna at Fairview Mall, which hooked me up with an oolong tea that helped settle my stomach nicely. I wish I could remember what it was called!!

Going Gluten-Free Part Three: Your GF Grocery List

Your first trip to the grocery store as a gluten-free person might seem a little daunting. So many items are labeled “gluten-free” these days; do you need them all? Do you need any of them?

One thing people complain about is the price of gluten-free food. Granola bars, for example, are (in my opinion) ridiculously priced. Bread and cereal also tend to cost a lot. Don’t bankrupt yourself to buy products that you really don’t necessarily need.

The other thing to consider is that gluten-free baked goods tend to be higher in fat, sugar, salt, and other bad stuff. This is because the companies still want their food to taste good, and most of us are used to things tasting a “certain way.” Because the flavour changes when the grain changes, they make up for it by slathering it in a bunch of bad-for-you ingredients.

So what do you buy? It depends on your eating habits, and it depends also on your budget. Here are some of my favourite grocery items. Yes, I will also be posting some of my favourite recipes. Cooking from scratch is the best, safest way to eat gluten-free. It’s also kinder to your wallet!  

Fresh fruit and vegetable produce is already good to go. Don’t get sucked into buying “gluten free apples” or “celiac-friendly potatoes.” (This is actually an illegal process, but I’ve seen it happen.) Grab all the fresh stuff you want, from avacados to zucchinis. Have at it.

Rice is safe, as long as it’s “regular” rice. Specialty side-kick products that come with flavourings/seasonings are probably not safe for you. White, brown, black, jasmine, basmati, etc – these are safe, and allow you to be creative.

Quinoa! I can’t say enough good things about quinoa. It’s easy to cook, it’s versatile, and though it’s a bit pricey, a little goes a LONG way. **Important** Not all quinoa is gluten-free. Quinoa itself does not contain gluten, but it can be cross-contaminated through processing and packaging. Not everyone bothers to buy the specifically gluten-free quinoa, but I do.

Raw, butchered meat is safe as long as it is plain – not seasoned, not processed. Because I’m currently not eating red meat and my fiance is cutting back on pork, my meat purchases are basically chicken and turkey, in many forms. (I LOVE to make shepherd’s pie with ground turkey. OMG!) Some deli meat companies have gluten-free products available, so if this appeals to you, check out both Piller’s and Maple Leaf Naturals. Piller’s dinner hams are also gluten-free.

There are lots of safe condiments you can buy; just read the labels first. Kraft salad dressings have everything labeled clearly, so you have a lot of options there. Kraft peanut butter is also safe. Billy Bee honey and honey mustard are safe. Regular yellow mustard is also usually safe, unless you’re buying a gourmet style. Bick’s relish and pickle products are safe, as are Unico olives.

Cooking oils (canola, vegetable, coconut, olive, balsamic, etc) are safe. Vinegar is safe EXCEPT FOR MALT VINEGAR. Pam cooking spray is safe if you stick to the regular; there are some flavoured ones that aren’t safe. Check the label first.

Que Pasa is my favourite brand of nacho chips. Regular ones are available at Metro, and Costco carries ones by the same company that are a bit thinner, lighter, and have even less salt. I like the Costco ones the best, but the regular ones are good too.

SummerFresh is a company that makes hummus and other types of dips. They will state on the lid if a product is gluten-free. They will also state if it’s vegetarian and/or lactose-free. (And they are super-delicious!)

Some of Chapman’s ice cream is gluten-free. Check the container for the label. A lot of their products are also peanut-free, if that’s a concern for you.

Udi’s gluten-free bread products are a nice treat. I don’t buy them all the time, because they’re not cheap. However, if you’re not ready to start baking your own bread, try some Udi’s. I heartily endorse their cinnamon raisin bread!

Canned fish can be a good option, as long as you’re careful about what you buy. Regular tuna and salmon is typically safe; however, some companies also offer flavour versions, which are sometimes not gluten-free.

Speaking of canned goods, I’m particularly fond of lentil/bean mixes. The 6-bean mix is my favourite, though red kidney beans come in a close second. Drain them and get creative! I like to add them salad, but they’re also great in soup, stews, or as a side dish on their own.

Going to the grocery store should be fun, not scary. You have a lot of homework to do, but try to find the fun instead of the stress. I will continue to post about gluten-free eating, so if you’d like me to address something specific, either email me (myendowellness@yahoo.ca) or post a comment below.

NEXT: Why you should make friends with your local bulk store!


With peace & joy,
Cher <3

Going Gluten-Free Part One: An Introduction

Introduction to Going Gluten-Free

Some Endo sufferers have found that removing gluten from their diets can help ease some of their symptoms. Other suffers have found that they have developed a serious intolerance to gluten, and therefore must go entirely gluten-free. While this isn’t a solution for everyone, depending on your symptoms and lifestyle, it might be worth your consideration.

What is gluten?

Gluten is a protein found in wheat, rye, barley, and (due to issues of cross-production/contamination), often oats. It’s what gives bread, cakes, and other tasty baked goods that soft, chewy texture.

Celiac disease is an autoimmune disorder; this is not the same thing as having a gluten intolerance, though many people who are gluten intolerant must be gluten-free to the same extent as someone with celiac disease.

Reasons to go gluten-free

You might find that avoiding gluten makes your day-to-day Endo symptoms more manageable. This may be because grains with gluten tend to be bloating; if you are already suffering with Endo symptoms, you don’t need to add to your troubles with extra bloating. Removing gluten may help ease the bloating sensation in your body.

You might be experiencing some intestinal issues. This is really common with Endo sufferers. I had to go entirely gluten-free because my Endo has disrupted my digestive system. After nearly 2 years of nausea, bloating, diarrhea, indigestion, and general overall malaise, cutting gluten from my diet (completely, 100%) was the first step toward feeling better. In as little as a week going gluten-free, I felt so much better. I couldn’t believe it!

Where is gluten found?

The short answer to this question is, “Everywhere!” When you have to avoid gluten, it seems like it’s everywhere you look. It’s hard to avoid, and reading labels can be really confusing. Let’s get started with the basics:

·         bread products (cereal, bread, cakes, pastries, muffins, etc)

·         seasonings (“spices” can only contain actual spices; “seasonings” can have all kinds of things)

·         chocolate (some companies put barley in their mixes; other chocolate may have wheat for filler and/or rye in additives)

·         meat (watch out for fillers!)

·         salad dressings

·         dairy products (yogurt, cream cheese, sour cream, cottage cheese – be especially carefully with anything less than full fat)

·         snack food (ice cream, chips, pre-made popcorn, etc)

·         specialty rice (regular rice is naturally gluten-free, but anything with fancy seasonings, flavourings is definitely suspect)

These are just a few areas to watch out for.  Read the labels, every time. If the labels aren’t clear enough, check online and/or call the product customer service line.

What can I eat?

When you start living a gluten-free life, it can feel like there’s nothing you can eat. Don’t get depressed; it’s not as bad as it seems. Really, by removing gluten-free food from your diet, you’re automatically cutting out a lot of junk food – that’s a totally silver lining! (Note: it doesn’t count as a silver lining if you just start eating GF junk food!)

Here are some things that are already gluten-free, to get you started. I will be posting later in more detail, but to get started:

·         fruit

·         vegetables

·         regular rice (white, brown, long-grain, short-grain, jasmin, basmati, etc)

·         meat (unseasoned/unbreaded/unprocessed)

·         cheese (fancy gourmet cheese might be an exception, so read carefully. Bleu cheese is a bit controversial – I stay away from it, personally)

·         condiments (malt vinegar, worchestershire sauce, soy sauce, bbq sauce, marinades)

Here are some brands that are either gluten-free, or have excellent, clear label policies (*note: this is for Canada only! If you’re not in Canada, make sure you get valid information for your region):

·         Kraft (If it’s not on the label, it’s not in the product)

·         Club House (If it’s not on the label, it’s not in the product)

·         Unilever (If it’s not on the label, it’s not in the product)

·         El Paso (part of the Unilever corporation)

·         Kettle Brand chips (check for “gluten-free” on the back of the bag)

·         Chapman’s ice cream (check for “gluten-free” on the package/tub)

·         Udi’s (gluten-free products)

·         Kinnickinnick (gluten-free products)

·         Que Pasa (gluten-free products)

Products are always changing, so check EVERY time.

Next: Overhauling your kitchen & cupboards!

With peace & joy,
Cher

Post-Surgery Tips

Surgery is something most, if not all, Endo sufferers experience at one time or another, if not multiple times. Since surgery is the only definitive* way to diagnose Endo, it is a very common part of the Endo journey. Even with the best surgeon, surgery is unpleasant at best.

With 3 surgeries under my belt, I’ve compiled a list of some tips to help you have the best post-op experience you can. I know there are Endo Sisters out there who have had more experiences than I have, or have had slightly different procedures done; I encourage everyone to add their own tips in the comment section. Let’s share the knowledge!

Remember: you should follow the advice of your doctor/surgeon before following the advice here. I’m writing based on my own choices and experiences, and what was right for me is not necessarily going to be right for you. Be safe, and communicate with your doctor/surgeon.

·         Taking a stool softener when you get home from the hospital may help ease post-op constipation. Constipation can result from prescription pain medications, eating a lot of carb-based comfort foods, being inactive, and not drinking enough water. Also, with a laparoscopy, the incisions in your abdomen might make it difficult to contract your muscles as usual to have a bowel movement. I recommend a stool softener instead of a laxative because I don’t like the cramping that often comes with laxatives – use whatever suits you best and what is ok to take with any other medications. Check with your doctor/surgeon, and also your pharmacist, to make sure you’re taking something safe.

·         Once you are allowed to remove the bandages from your incisions, check your incisions every day. Report any discolouration, foul odors, inflammation, or other odd symptoms to your doctor immediately. Don’t mess around with a potentially-infected incision. If you cannot see all of your incisions yourself, be sure to have someone check for you. Your immune system will naturally be a bit weaker after your surgery, so it’s extra-important to be on guard for infections.

·         Prepare your comfort items the day(s) before your surgery: Heating pad, sweat pants, favourite snacks, duvet – whatever you’re going to want to help you relax. Make sure you put them in a reachable place. The last thing you’ll want to do when you get home is to try to pull things from cupboards and closets.

·         Do some food prep before your surgery. This will cut down on what you have to do when you’re dealing with post-op pain, and will help you make good food choices. For example, you can hardboil a few eggs – if you leave them in their shells, they’ll be good for a week or so. Make some soup or stew, and put individual portions in your fridge/freezer. Breakfast cookies, trail mixes and casseroles are also great options.

·         Listen to your doctor’s instructions. As women, we seem to be programmed to try to be superwomen – this will not work well post-op. Your doctor will give you activity guidelines, and it’s a good idea to follow them as closely as possible. Doing too much too soon can tear stitches, which can result in infections, and it can also set back your recovery. Be patient, and let your body heal at its pace. If there are things you absolutely must do, be sure to move carefully, and rest between activities.

·         Don’t go overboard with anti-inflammatories. I wish I’d known this! After my last surgery, I was prescribed painkillers but had a life-threatening reaction to them. The doctor told me to take acetaminophen, but I decided ibuprofen would be better – BIG mistake. The damage to my stomach lining was horrifying. It took ages for my gut to get back to normal. The gut pain was actually worse than the post-op pain. Not worth it.

·         Stay hydrated. Dehydration, or even underhydration, is going to make it harder for your body to heal. Even though getting up to pee may be a huge, painful hassle, a delayed recovery and/or a urinary tract infection = bigger problem. Also, water helps prevent constipation (see first point).

·         Topical muscle creams are awesome! Personally, I have a great love for A535, but you may like another brand better. It’s common for the surgical gas to settle in the shoulder/neck/back, and it can cause serious pain. Be sure to keep the cream away from your incisions (and any other open wounds) and follow the product instructions properly.

·         Don’t let your diet get off-track. When you’re laying down all day, exhausted and in pain, it’s easy to snack on your favourite comfort food and not think about it. It’s tempting, but it’s not a great idea. As soon as your appetite allows, try to keep getting your fruit, veg, and whole grains. Your body will thank you for it! Good nutrition helps your body more than that bag of chips. Don’t clog up your inactive body with a bunch of garbage.

·         Write it down. Keep track of your symptoms, your pain scale, any side effects from medications, what/when you’re taking anything, and so on. Bring this information to your follow-up appointments to share with your doctor. This information will also come in handy if you have any complications.

Good luck! Surgery can be scary, painful, and emotionally difficult; anything you can do to make your post-op experience even a little easier for yourself will help you out.

Remember to post your own tips in the comment section!

With peace & joy,
Cher

"Maybe Endo"

“Maybe it’s Endometriosis.” At some point, most (if not all) Endo Sisters have heard this phrase. In my own experience, it was about 3 years after my journey had started, and it was from the lips of my new gynaecologist, Dr. W. I was fortunate to be referred to Dr. W., for she is a wonderful doctor with a fantastic bedside manner. However, even with the best doctor on your side, “maybe Endo” can be traumatic to hear.

In this day and age of relying on the internet, searches for “Endometriosis” can be both enlightening and terrifying. Some information may confuse you; other information may be completely inaccurate. You may feel like you are wading through quicksand. It’s a scary time. Here are some tips for surviving this time in your life:

·         Get GOOD, ACCURATE information. If you’re using the internet, start with websites from professional practitioners and/or information pages. If you’re just learning about what Endo means, you need real, accurate information.

·         Don’t panic. A Google search for “headache” will usually tell you that you probably have brain cancer. The internet is a great tool, but it’s not perfect. Online resources are not tailored to the individual, so don’t assume everything you read is meant for you.

·         Get referrals. If you have a friend who is even slightly involved in the women’s health system (doctor, nurse, patient, non-traditional practitioner, etc), talk to them. Your doctor may have a list of contacts for you as well.

·         Write it down. Questions, concerns, things you’ve heard, things you’re confused about, things you’re feeling, changing in your symptoms, how you’re treating your symptoms – write it all down! Don’t show up for your appointments without sold, reliable information. Know what meds you took, when you took them, and how they felt. Know when the first date of your last menstrual cycle was. Be able to tell them if it was different than usual, if the pain was better or worse, and so on. They can’t help you if you can’t tell them.

·         ^ Also: write down everyone you see, when, what you discussed, and any tests/exams/treatments. You might need to refer back to this information later, so be as clear as possible.

·         Get connected. Twitter, Facebook, www.endosisterhood.ca: these are just three of the many, many ways to connect to the Endo world. Even if you’re a “maybe” right now, get connected. It helps to know there are other people in the same boat, and you’ll find a lot of information.

·         Breathe. Treat yourself kindly. The more you stress, the worse you’ll feel.

Do you have tips to share? How did you handle the beginning of your journey? Do you remember what “maybe Endo” felt like? Tell us below!


With peace & joy,
Cher

Be Your Own Advocate

It’s not that no one cares about you; it’s that no one cares about you the way you care about you – or at least you should. Doctors, specialists, treatment partners, family members, employers, friends…they care, but they’re not you. They can’t make decisions for you, they don’t experience what you experience, and YOU are responsible for your choices.

The medical system can be intimidating. It sometimes seems that women’s health is the least-supported area, and it may take a while for you to get the help you need. Since even the best doctors aren’t always familiar with Endo, you may experience a labyrinth of appointments, exams, pills, and assumptions. It can be frustrating, isolating, and stressful.

Advocating for myself didn’t come easily. My Endo journey began when I was just 15; I didn’t feel comfortable butting heads with people more than twice my age. They were bigger, older, and knew more about medicine than I did; I didn’t know how to stick up for myself. I didn’t know how to refuse treatments I didn’t want. I didn’t know I had the right to stop exams that made me uncomfortable. Looking back, there are so many times I should have stuck up for myself.

When you begin traversing the various clinics, hospitals, and appointment rooms, you will inevitably run into practitioners (traditional and non-traditional) who look down on you, talk over you, or dismiss you. You may feel belittled, ignored, or unheard. Don’t make the mistakes I did: stick up for yourself. Demand the opportunity to speak and ask questions. Require practitioners to hear you. Insist on information before making any decisions. Make sure the decisions made are YOURS.

Some practitioners may refuse to see you again if you don’t like their treatment plan. Don’t worry about it. It’s better than being railroaded into treatment that makes you uncomfortable.

In the end, you’re the one who has to live with the outcomes of each treatment. Whether it’s pills, body adjustments, dietary changes, herbal remedies, or something else, it’s YOUR body, so it’s YOUR choice. Don’t back down.

Come to your appointments prepared. Do your homework so you can ask intelligent questions. This will make it harder for them to dismiss you, and it will identify you as someone actively engaged in your treatment; you are not a passive patient. If something makes you uncomfortable, speak up – yes, even in the middle of an exam. If you say stop, they’re required to do so. To do otherwise is assault.

Every time an Endo patient demands to be heard, it’s one step further for us all. Don’t be intimidated by white coats and medical terminology. Ask questions. If you don’t understand, ask again. If you’re uncomfortable, tell them so. If you compromise in your treatment, you will compromise your health.

Be your own advocate. Refuse to be silenced.


With peace & joy,
Cher

My Endo Story

I'm going to attempt to tell my Endo story. "Attempt" because so much has gone on over the last 15 years, that I'm sure some details aren't as clear as others anymore. There are also things I've worked hard to forget. This isn't a competition; everyone's story is different, and everyone suffers in different ways. All I can offer you is what I've experienced myself. If you want to share your own story, feel free to use the comment section.

I was 15 when my symptoms started. My periods had been normal until then; sometimes it seems like a switch got flipped in my body and everything changed. At first, I felt fine all month until my period, which would make me nauseated and tired, and cause pain around my appendix. After two or three ER visits thinking I had appendicitis, my doctor put 1 and 1 together and told me I had "bad periods."

Eventually, maybe a few months to a year later, I started having midcycle pain as well as menstrual cycle pain. For two weeks a month, I lived on ibuprofen and gravol, and tried to live life as normally as possible. Somewhere during this time, I developed severe anxiety - I'd had too many random bouts on vomiting and lightheadedness, that it became a vicious cycle. I was either actually sick, or scared to death of being sick. To say this took a toll on my social life is the understatement of the century.

I was put on birth control, which did help a bit. My periods were shorter, and I was able to predict clearer when I would have my period. This helped me plan ahead; I knew which weeks were more likely to be bad weeks.

By the time I got to university, my menstrual cycles were so bad that I would be in bed for at least 3 or 4 days each month. Since I was trying hard to earn my degree, this complicated things. My (awesome) gynecologist recommended I try continuous birth control, and I started going 3 packs straight before having a period. Continuous birth control didn't make my periods any more bearable, but it was (and still is) great not having a period every month. This definitely was beneficial for me, because I was able to attend classes almost all the time, instead of missing classes each month.

I was 20 when I had my first surgery. They did not find any Endo the first time; they found Pelvic Congestion Syndrome, and I was advised to stop eating wheat products and anything else that might cause bloating. Cutting out wheat worked really well, but of course I didn't stick with it. The pain came back, worse than before, and I didn't give the wheat another thought - at least for a while. (Spoiler!)

I had my second surgery about 3 years after that. That time they did find Endo, in small amounts. It wasn't considered "severe," but it was definitely there. By this time, my symptoms were most of the time: lower back pain, lower right quadrant pain (extended into my thigh), nausea, constipation, diarrhea, fatigue. Life was getting harder.

I had my third surgery 3 years ago. That was a much larger, more invasive surgery. Among other things, I had my peritineum removed, which made for a very painful recovery. I had a violent allergic reaction to the oxycodone they gave me, so I had to survive on ibuprofen - which promptly destroyed my stomach lining. I can't tolerate ANY anti-inflammatories now, as they all give me allergic reactions.

Somewhere during this time, I quit my job. I had been working as an Early Childhood Educator at a local childcare centre, but the constant manual labour associated with this type of work was killing me. About a year before I quit, I started studying at night to be an Adult ESL instructor, which is what I do now. Changing professions was hard, and emotional, but it was for the best.

Following my third surgery, I felt AMAZING - for about 10 months. One day, at Wal-Mart, I suddenly felt a pain in my lower right quadrant that I hadn't felt since before the surgery. Yes, the Endo was back, and it was attacking me out of nowhere. I was so crushed, but there wasn't anything to be done about it, so I tried to go on.

About 4 months after my third surgery, my doctor determined I had a bad gluten intolerance. I don't have "celiac disease" (which is an autoimmune disease), but I must follow the same super-strict diet. She told me that this is very common with Endo sufferers; I'll post more about food intolerances later, but let me say that since going gluten-free, I've had an easier time with my digestive issues.

Around the same time as going gluten-free, a new symptom appeared: a stabbing, nightmarish pain around my tailbone and rectal nerves. It was like someone had stabbed me in the tush with a rusty, burning spike. A trip to the doctor resulted in a diagnoses of a cul-de-sac obliteration and rectovaginal Endo. Of course, these things don't always show up on ultrasounds, so the only "proof" I have of these diagnoses is what I feel, and what my doctor has told me.

So where am I now?

I work from home, which is the best possible thing in the world for an Endo sufferer (barring a magical cure, of course). If I'm having a rough day, at least I don't have to worry about commuting and making small talk with co-workers. My heart goes out to my Endo Sisters who don't have this option, because I know what a told Endo takes on professionals.

I'm not taking any medication for my Endo anymore, aside from my birth control. I'm working with my doctor, following the Endo diet, and trying to exercise regularly. I see my chiropractor and massage therapists as necessary. I dabble in aromatherapy. I listen to what my body tells me. I will post about all of those things in more detail, of course, but that's an overview of where things stand right now.

If you're wondering why I haven't mentioned other medications, it's because I haven't really taken any. In the past I've been given painkillers here and there, but I've found the side effects to be worse than the symptoms. (The exception to this would be Ponstan, which I use very, very sparingly). I prefer a more natural approach for myself, but that is absolutely NOT  judgment on anyone who uses prescribed medications to help their Endo. Everyone's journey is different, and we all have to do what works for us.

I'd love to hear your story! Post it in the comments or email me at myendowellness@yahoo.ca if you'd like me to post it for you.

With peace & joy,
Cher
<3

Welcome & Introduction

Welcome to all my Endo Sisters, and anyone who has come across this blog searching for information on Endometriosis. I hope this blog will be a source of information and help to each and every one of you.

WHO?
My name is Cher, and I've had Endo for 15 years. I'm 30 years old now, so I definitely feel like a bit of a "veteran" when it comes to dealing with this disease. I live in the Greater Toronto Area, and am engaged to a handsome, wonderful, supportive man. (Wedding in less than 6 months! Woah!) I teach English; I enjoy gardening, cooking, reading, and maintaining a healthy lifestyle - more on that later.

WHAT?
The purpose of this blog is a bit of a buffet. My aim is to offer a little bit of this and little bit of that, from within the Endo world. Take what you need, and leave the rest. Remember that this disease hits every person differently, so the information I offer may or may not work for you. Don't be discouraged; take the next step on your journey and keep your head up. Remember also that I'm NOT a doctor, and no information on this site is offered in place of professional diagnoses or treatments.

I would love to connect with any other blogging Endo Sisters! If that's you, get in touch with me!

You can expect updates about cooking, home remedies, fitness, relaxation, doctors' appointments, and really anything else related to Endo. If you're afraid of words like "vagina" and "uterus," this probably isn't going to be the blog for you.

WHEN?
I make no promises of routine updates. My work schedule changes every week, so sometimes my days flow better than others. If you follow me on twitter (@cherceegf) I'll be sure to mention updates there. Otherwise, check back often!

WHERE?
There are a few places you can contact me, if desired.
Email: myendowellness@yahoo.ca
Twitter: @cherceegf
Leave a comment after a post!

WHY?
After years of going it mostly alone, I sympathise with the newly-diagnosed and thos struggling to live with Endo. I know what it's like to be either drowning in confusing information, or not finding any information at all. I have some information and ideas to share that I hope will be beneficial to everyone. My experiences with the Endo Sisterhood site (endosisterhood.ca) and all the Endo Sisters on Twitter and Facebook have shown me that we are stronger and healthier together, rather than navigating our Endo mazes alone. Let's stick together, help each other out, and make a difference in each other's lives.

Let's get started! Each journey begins with a single step. You've already started!


With peace & joy,
Cher