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 Through laparoscopic ablation – a technique long outdated but sadly still performed – it was revealed that at age 29 I had endometriosis on several organs.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!
What ‘fighting for care’ really means
It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual…
The Shittery -volume 1
I haven’t written a post in so long, and honestly, I was afraid that with everything going on I would just be a wet blanket. The fact is I was going in circles trying to figure out how my gut health – something I have worked so hard on – could all go down the…
My Story with Endometriosis
For Endometriosis Awareness Month I wanted to share my story with endometriosis and how difficult it has been to navigate for over 20 years.
Why I chose not to have children
Why I chose a fruitful life over struggling to conceive with endomrtriosis.
The Chair Technique
I was able to hold it together for so long, with the endometriosis pain running my life, and the new diagnosis of an immune disease changing my life forever. I could hold it together while I was alone in Vancouver, but then I moved. I moved a day late because of a pancreatitis flare that…
Central Sensitization from Endometriosis
There is a process that happens in the body overtime when a threat is persistent. Ideally, something causing a threat to the body would be temporary, and the body is equipped to send pain signals and therefore protect the body from whatever is causing the pain. Think about how quickly your brain tells you to…
Cannabis for chronic pelvic pain
I wanted to do a post about medical marijuana as I think this is such an important topic. The legalization of these products has opened the eyes of individuals who would not normally smoke a joint – let’s say – to explore the effects of cannabis on pain, as these products are becoming more accepted…
Primary vs Secondary Dysmenorrhea
We have this notion – or perhaps a false hope – that excision surgery is going to miraculously take away all the pain and suffering leading up to this day. And, while excision is the gold standard of diagnosing and treating endometriosis, it is always good to be prepared for lingering AND new symptoms that…
Not knowing IS the battle
It all starts with not knowing. I mean think about when you first got your period. Aside from maybe the moms who they themselves had/have endometriosis, did anyone sit you down and tell you what to expect if you have painful periods? Did anyone give you a hotline to call if your cycle is out…
How They Diagnosed Me With Diaphragmatic Endometriosis
As I navigate this journey I realize that there are so many people out there who are trying to navigate the same waters. So, I wanted to take a step back and share how I was diagnosed with thoracic/diaphragmatic endometriosis in case there are others who need this right now. I had an ablation in…
Excision Surgery Part 2: I Know My Body
We all say it, right? I know my body. I know when something is wrong. I know that something is suspiciously right. When you are sick 99% of the time, you know how your body feels with every sway and every stumble, and every new stimulus. You know all the different kinds of pain: from…
Excision Surgery Part 1: From The OR To My Bed
For those of you who are still on the edge of their seat waiting to hear about what’s been happening with my endo journey, here goes. To recap, back in February I asked to see my Gyn because Orilissa was eliciting dark suicidal thoughts (not tendencies, thank goodness). At that time they told me to…
Appendicitis? That’s a new one
I was angry that “I wouldn’t know” was an acceptable answer to an emergency doctor who should have given me more than half a second to understand my endometriosis. I was mad. And yet, there was nothing I could do about it.
How I described pain as endometrial lesions spread throughout my body
I got up to pee in the middle of the night, the whole world dark around me. I sat there, relishing in the mere moment where my mind and body were disillusioned by the fact that I was half asleep and too withdrawn to feel the pain. But as my body started waking up I…
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…
I told them ‘morphine makes me worse’
Some would say I have been dealt a shitty hand in health. And those who know me would likely tell you I have a fairly positive predisposition no matter what gets thrown at me. There is not much by way of my medical journey that gets me mad. Upset, yes, but mad… not that often.…
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…
Our voices are much stronger when we shout together
Lately I have been able to channel my energy into my passion – an organization I am developing here in Ottawa, Canada – that allows me to put my advocacy into real action. While still in the early stages, the organization will turn into a pain center devoted to women with unresolved chronic pain, and…
Endometriosis versus Erectile Dysfunction – the numbers are staggering
A lot of my posts are drafted for days while I gather stats, and mull over the most politically correct way to convey information without sounding too bias or uninformed. But every once in a while I get the motivation to write something off the cuff; something that comes from my innermost emotions and bubbles…
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…
Real emotions are hard to ignore
It has taken me a few days to feel ready to write this blog. Mostly because, I think I was (and am) scared of describing the intense emotions I have been feeling over the last few weeks. Let me set the stage. In my last visit with Dr. S, he mentioned that the Visanne should…
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,…
Endo Toolkit – by Jessica Murnane
Endo sisters! If you have not yet heard of Jessica Murnane you must become familiar with her work immediately. Several years ago I came across her book ‘One Part Plant’ and bought it right away. I knew she was legit because the forward to her book was written by Lena Dunham!!!! Anyways, we’ve messaged back…
Listening to my body – Part 3
I would like to entitle this blog post “taking matters into my own hands” simply because the last month has been complete and utter HELL and I have not heard a peep from either doctor despite my concerns. I should preface this by saying I feel confident my doctors respect me so I don’t think…
Listening to my body – Part 2 (B sides)
I’m not sure why I thought this would be the end of my journey – a perfect harmony of data points that would lead me to become a normal human being once again. It started out as if everything was happening in tandem like the parting of the sea, but no, not quite that easy.…
Listening to my body – part 2
It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and…
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…
My medical records could be a best-seller
How do we get around the redundancy of the current triaging system?In the last 12 months alone I have amassed quite a thick file of medical records; from scans to diagnoses and undefined medical revelations. Add that to the 20 previous years of fruitless ultrasounds for burst cysts, a gallbladder removal, and many many tests…
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…
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…
Everything happens for a reason, right?
What I want to say to all the future women I have always been a big believer that everything happens for a reason. Even now, as I decide which pain medication to use for the degree of suffering I’m in, I still feel as though my grander purpose in life is to educate other women…
Leaning on your spoonie support system
Talking through endometriosis, ulcerative colitis, hysterectomies and more Rachel Egan, I am so delighted to be interviewing you today as I think your story, while complicated, will resonate as a whole – or in parts – to a lot of people. To give people a background, I was admitted to the Vancouver General Hospital almost…
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,…
Periods and Poop
Why we need to listen to our bowel symptomsSo 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 not…
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…
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…
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…
What does my child have to do with this?
Why so many of us dont want to talk about Endometriosis I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry,…
What I would say if everything was fair game
Lets talk about what endometriosis really is. I, like many of my endo sisters, try to avoid talking about endometriosis because we would have to first explain periods, the vagina, and other taboo topics. But what if everything was fair game? What if I just put it out there, and let people decide how they…
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…
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…
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…
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…
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…
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…
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…
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…
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…
Identity Crisis – redefining who I am after endo and UC
Feeling lost from auto-immune diseases I know this sounds utterly drama-tastic but I literally feel like Im having an identity crisis. Over the last few years I had built myself up to be the strongest, most positive person there was. I was exercising every day, eating a whole food diet, and happy as a clam.…
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…
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