"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

The Endo Diet

I’ve been following the Endo Diet for about a month now. Truthfully, I was following it “sort of” for a while before that, but now I have committed to it seriously. Should you try the Endo Diet? There are issues to consider before making this decision. First, let’s take a look at what the Endo Diet is.

There are some different versions floating around out there, but this is what is working for me:

·         No gluten (I’ve been gluten-free nearly 3 years, due to a severe intolerance)

·         No dairy

·         No red meat

·         No soy

·         No caffeine

·         Reduced refined sugar

·         Reduced alcohol

·         Reduced poultry/pork

·         Reduced heavy carbs

·         Increased protein (eggs, nuts, fish)

·         Increased fiber (flax seeds, hemp hearts – more on that later)

·         Increased water

Personally, I have found this to be very helpful so far. It’s too soon to say if it’s “working” or not, but I do feel a lot better. Before following this diet, I was having a lot of upper GI and uppper left rib pain. Often, after eating, I would have pain, nausea, vomiting, and bowel pain. It got so bad that I ended up in the ER, thinking my organs were exploding. That experience scared me into re-evaluating the connection between what I eat and how I feel.

For the last week, I’ve been on really aggressive twice-daily antibiotics. They have been very hard on my stomach, and I haven’t been able to follow the diet as closely as I should. I’ve had to carb load, and haven’t been able to stomach some of my usual fruit and veg. As a result, this morning I noticed the upper GI pain and rib cage pain starting to creep back. It could be coincidence, given how random Endo pain can be, but I think there’s more to it than that.

So should you try the Endo Diet? I can’t answer that for you, but if you’re having digestive issues, it may be something to consider. As always, be sure to carefully document changes you’re making in your treatment so you can track your results effectively.


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
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