My Endo Story

Ever since I started my period at the age of 14 I have suffered from tremendously painful, heavy periods. I knew these weren’t normal but conversely I didn’t think they were medically alarming. Until one day I was admitted to the hospital from the extreme pain to learn that one doctor and one nurse believed I might have a disease called ‘endometriosis’. A disease! It wasn’t until 15 long years later (and many packages of birth control and negative pregnancy tests endured) I was officially diagnosed with endometriosis. Through laparoscopic ablation – a technique long outdated but sadly still performed – it was revealed that at age 29 I had endometriosis on several organs. After the removal and a few different life altering events I vowed for a fresh start in life, and moved to LA. I vowed to live life to the fullest, and be the best version of myself that I could be. Which I did. And I was. Until life took me to Vancouver (back to Canada) and while the events were unrelated, the endo pain came back with a vengeance. While I was mentally preparing for my next laparascopy (excision) surgery which would reveal that endo had spread all the way up to my diaphragm, I go hit with the flu and struggled it out for a week until I succumbed to going to the hospital. What I thought was the flu ended up being the tipping point for severe ulcerative colitis that seemingly hid behind the digestive symptoms of endometriosis for many years. I surpassed the opportunity for suppositories or oral tablets and was given steroids and a biologic that has been a good fit for the last few years. Now, I sit in the clinic once every four weeks to receive my infusion on top of everything else that I’ve been dealt.

The worst thing about endometriosis is the lack of knowledge, funding and empathy. Ok, thats three things. But they make up one big problem. As a patient, there is a fine balance between knowing enough and knowing too much. So I tread lightly, express my opinions and when I need to and succumb to the doctors if it lets me progress in my treatment. It hasn’t been an easy road and I have now pretty much done it all. Some things I didn’t think I would ever do, of which some turned out horribly as expected and some things surprised the hell out of me. So I keep pushing, and advocating for myself. I chronicle everything here in hopes that my self advocacy can give you the courage to advocate for yourself!

The math doesn’t add up

I don’t know if anyone reads blogs anymore; certainly with Instagram and Twitter taking the main stage for social media. But, to me this is the only place I can fully capture the emotions that I endure throughout these new stages of my journey. I’m struggling with the words though because things are not adding… Continue reading The math doesn’t add up

Progestin making you bloat?

One of the messages that I try to convey to my readers is that you MUST listen to your body. The other message – which is a mucher harder one to convey and certainly harder for my readers to follow through on – is to be your own advocate. Sometimes your physicians are not as… Continue reading Progestin making you bloat?

Divorce and Chronic Illness

During the last year I have battled with my health, and as a result have battled with loving myself. When I look in the mirror I see scars from surgeries, cellulite from poor lymphatic systems, bloated belly from something Ive eaten or just a mere buildup of poop. I see swelling and tension. I see… Continue reading Divorce and Chronic Illness

Pain Survey

Cramp My Style Blog is expanding. The new initiative is focused on neutralizing gender-biased outcomes in pain treatment. On the onset, the goal will be to understand the challenges presented to women (and transgender) when confronting their healthcare practitioners about pain. Once this initial information has been collected, the focus will be to lobby for,… Continue reading Pain Survey

Listening to my body – Part 1

With so many things happening to my body at once, I spend a great deal of time discerning between endometriosis pain, ulcerative colitis pain, anxiety, stress and just an off day. I run out of spoons a lot, and I am starting to look at my body with disdain – something I don’t even want… Continue reading Listening to my body – Part 1

A spoonie Holiday Poem

To all those out there who are listening for a second there are a few reminders I need to tell you; While this holiday you want me to join you in the adventures, to be honest, I’ll only be able to endure a few.   I wake up in the morning feeling pretty achy and… Continue reading A spoonie Holiday Poem

An Autoimmune Gift List

Do you know someone with an autoimmune disease? Are you unsure what to get them for the holidays? Many of us autoimmune sufferers chat on social media almost every day about things that have worked for us – either therapeutically or mentally. Sometimes its as easy as a smell or a feeling. To help you… Continue reading An Autoimmune Gift List

I tried to be nice

Lupron Therapy for Endometriosis I am utterly frustrated with myself because leading up to this blog article I have been able to convey information with an unbiased perspective, articulate both negative and positive outcomes of research, and have educated those who are less informed than I am. But this next article I have to write,… Continue reading I tried to be nice

Periods and Poop

Why we need to listen to our bowel symptoms So many young women have approached me about endometriosis – and its related symptoms – to help determine if they have the disease. Because of their age, the vast majority have been told by their doctors that it is likely they have endometriosis but it has… Continue reading Periods and Poop

The Reuleaux of my health

The meaning behind the logo For the last 20 years I have been trying to better understand and ‘treat’ my endometriosis with surgeries, birth control pills and pain medications. In the latter years I started to get wiser about the effects of nutrition and thus started to explore dietary solutions to mitigate the symptoms associated… Continue reading The Reuleaux of my health

Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where… Continue reading Is it rare or medium rare?

To Lupron or not to Lupron

A big decision whether to begin Lupron injections Im not sure why I thought I would be able to go to sleep tonight without writing this blog. So much has happened today and while in part this is to help others struggling through this big decision, this is also here to help me disseminate all… Continue reading To Lupron or not to Lupron

Dont tell me what to do

Working on you, when you are ready I refuse to be called a millennial and in the grand scheme of things I dont think Im that stubborn. But I have noticed a trend in my life: that I can only do things when I am ready. For instance, when I was 12 years old my… Continue reading Dont tell me what to do

My new sistas!

The Support Network of Spoonies It has been 23 days of constant (chronic pain) and sadly I dont see a light at the end of the tunnel yet. I am trying my very best to live, and breathe and be positive but some days are better than others. To say the least I have been… Continue reading My new sistas!

A pendulum between two diseases

Between Ulcerative Colitis and Endometriosis Where did I leave off? Oh yes. So I kept you hanging with the MRI results, and still no word from either doctor. On Monday morning I called to make an appointment with both my GI and my endo specialist. My GI had just returned from holidays and I was… Continue reading A pendulum between two diseases

My abdomen is not happy

Undiagnosed abdominal pain I dont know how to begin this blog article other than to really start at the beginning of this journey. I thought for sure this wouldnt be worthy of an article as I just assumed this pain would go away through a fart, or a bowel movement, or maybe by way of… Continue reading My abdomen is not happy

My body is attacking itself

Having multiple autoimmune diseases I was born a fantastically healthy baby, with no jaundice, asthma, or abnormalities that would see me through to adulthood. Until I was 14 and the much raved about menstrual periods started.  I was overjoyed by the fact that I was part of the club that I didnt bother mentioning to… Continue reading My body is attacking itself

My face is a mess

Using organic products to combat oil and acne from hormones. Today is the perfect storm for an oily face, and some breakouts that are just brewing under the skin. I can feel the change in temperature is making me sweat throughout the night despite my desperate attempts to stay hydrated and cool. I also know… Continue reading My face is a mess

I used to miss my pain meds

Using Turmeric Liquid Phytocaps for inflammation Alright so this is my big moment of putting my foot in my mouth. Here goes. So for the last 14 years I have been depending – and I dont use this term lightly – DEPENDING on advil to get me through period pain. I’ll be honest, it did nothing… Continue reading I used to miss my pain meds

Travel Symptoms for UC and Endo

I have mentioned in the past that the diet for endometriosis and the diet for Ulcerative Colitis are quite contradictory to one another. In the years that I only knew about my endometriosis I knew exactly how to avoid getting endobelly – the distended belly that results from inflammatory foods such as carbs. But once… Continue reading Travel Symptoms for UC and Endo

A period after 8 months

Inducing a menstrual period with Visanne Here is a new one ladies – so I had my follow up with the Endo surgeon several (like 9) weeks after my excision surgery. She surprised me with an internal ultrasound (yay me!!) to see if the spots she worked on were healing well. The ovarian suspension looked… Continue reading A period after 8 months

March for Endometriosis Vancouver

Every year more and more people gather around the world in support of Endometriosis awareness. March is a special month for all us #endowarriors! Despite the fight for media attention during Fight For Our Lives – and reasonably so I might add – we still marched loudly. To all my Vancouver/Victoria endo sisters, thank you… Continue reading March for Endometriosis Vancouver

The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back… Continue reading The Tango Between Two Diseases

Too many pills

What a day! I am finally well enough to talk about what happened two days ago. As you know, my GI told me she wants me to increase my salofalk dose from 2 pills three times a day, to 8 pills once a day. Mother of goodness, that is a handful of pills. Not to… Continue reading Too many pills

Skipping my period – the journey

Skipping Menstrual Periods Because of Endometrial Pain After seeing an Endometriosis specialist in July, it was clear that my pain pathway was undeniable, and that the endometriosis was in fact back with a vengeance. Not only is my endo on both tubes, but the left tube is so sticky that is affecting my left sciatic… Continue reading Skipping my period – the journey

Creating a new ‘normal’

Changing Lifestyle Habits Due to Auto-Immune Disease I asked my mom the other day ‘do you still believe everything happens for a reason?”. She hesitated as the question came out of the blue. I asked again, ‘do you think my endo is happening for a reason?’ and like every optimistic mother would say she replied… Continue reading Creating a new ‘normal’

Step 1 – skipping my periods

After meeting with the specialist we determined that the first plan of action would be to take my birth control pill consecutively for three months, with no breaks in between, to see if the pain would decrease. I have always been skeptical of this plan because knowing the science behind the menstrual cycle I thought… Continue reading Step 1 – skipping my periods

The Endometriosis Coalition

I finally saw a specialist this week who was able to semi-confirm I have endo on my diaphragm, hip, and deep within my abdomen. They kept using the term ‘rare’. “your pain path is very rare”, “the location of your endo is very rare”…. and I just started to feel a little bit… helpless. When… Continue reading The Endometriosis Coalition

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