Navigating Endometriosis and Ulcerative Colitis

Written by Anusha Gandhi

I was led to believe my GI issues were all endometriosis related.

At the age of 14 I started my periods. Right away, my periods were heavy, painful, and at random. At times, I was using a new pad every 20 minutes just to avoid any soaking through my clothing or my bed sheets. I would bleed for a few days, stop, then bleed for another 11. I was prone to fainting because of the blood loss, and overall, the experience was always awful.

One thing I learned from the get-go was that my bowels were on overdrive any time I was menstruating. At the time I didn’t know the scientific connection between menstruation and hormones or why my bowels needed to empty on those days, but I knew that once my period started I needed to be close to a bathroom at all times. And to be clear, this wasn’t just more frequent healthy bowel movements, this was full-on diarrhea.

When I moved away to university it became a running joke between my best friend and I that no matter where we went - for lunch, shopping, coffee - the first thing I needed to do was find the bathroom. In certain instances, running to the bathroom wasn’t a casual endeavour; I nearly wouldn't make it in time. But this was just my life. I was kind of used to it. For me, periods and poops just went hand in hand.

As I got older and the symptoms got worse, I fought to get some clarity. At the age of 29 I was diagnosed with a disease called endometriosis; a disease that affects 1 in 10 individuals who menstruate. This is where tissue similar to the lining of the uterus (the endometrium) grows on other parts of the body. I knew my experience of menstruation was not normal, or healthy. Needless to say I was not shocked in the least when I was officially diagnosed through surgery. The fertility specialist at the time was able to remove endometriosis from my ovaries, bowel and bladder, but with the ablation technique he used, we knew it would grow back. I was also told that there is no cure for endometriosis.

Having a disease with no end date meant I was encouraged to do my own research in order to find quality of life. I joined many endometriosis Facebook groups, eventually got on Instagram, and have met some of the most amazing people in my life. One thing that remains consistent with all of us with endometriosis is that we all have diarrhea when we are menstruating. Research has shown that cramping associated with menstruation is linked to prostaglandins – a hormone-like substance found in the tissue that are signalled to contract to facilitate the shedding of your lining (thus your period). Unfortunately, prostaglandins are found in basically any tissue that is able to contract (aka inflammation) and therefore when the body sends signals for them to contract, it most likely also results in contraction of your bowels. We all know cramping of your bowels is a sure way to stimulate some poop.

Sure this was not a great way to start my cycle every month, but I was comforted by the fact that it was a prevalent symptom within the endometriosis community. And then one day on a fine November morning, I felt like I was getting the flu. Two weeks of running to the bathroom, and not being able to keep anything in, I succumbed to going to the hospital. I stayed in the hospital for 10 days, and walked out with an utterly surprising diagnosis of ulcerative colitis; a form of Inflammatory Bowel Disease. Not only was this concerning, but confusing, as I had chalked all these symptoms up to endometriosis. Now I was tasked with discerning between endometriosis pain, ulcerative colitis pain, and just plain old poopy pain. Once the inflammation from the colitis flare had gone down I tried to keep a journal of all of my symptoms. I was able to feel a stomach ache which usually came about if my colitis was angry. I was usually able to tell period pains as it coincided with many other symptoms as well. But when they both happened at the same time, I didn’t bother trying to silo the diseases, I just rested.

Navigating both diseases is difficult, and they are forever evolving. I've been lucky enough to meet some incredible people who suffer from both diseases and we have really helped each other along the way; emotionally more than anything else.

I created crampmystyleblog in hopes that my journey would resonate with others who are suffering in silence. At the same time, I wanted a way to document my journey so that I could look back and remind myself of how far I have come.

The biggest thing (and maybe the hardest thing) I learned over the years is self care. Without it, everything gets jumbled up, with rising stress and anxiety. Sometimes we spin so hard trying to figure out what’s what, and why it's happening, even when we hit a dead end. And then all you can do is run a hot bath, or take a long nap. Self care is so critical in reducing stress, and taking active steps not to run on empty.

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