A Triple Diagnosis: Endometriosis, IBD, & IBS

'A Collection of Journeys' In collaboration with Cramp My Style


We're sharing real experiences, insights, and tips from people who deal not only with endometriosis, but also inflammatory bowel disease AND irritable bowel syndrome. Often, people who have all three issues find it difficult to differentiate between symptoms. We put together this Collection of Journeys to help others in the community navigate their symptoms and to give insight into how others differentiate the three types of pain. We hope this collection provides awareness, education and a space for others to realize they're not alone.

Beth

Birmingham, England

@bethgracie_

Endometriosis, IBS mixed and presumptive Ulcerative Colitis


What do your bowel issues feel like with having endometriosis?


I was diagnosed with IBS the same time I was diagnosed with endometriosis, the pain has always been hand in hand with each other. Bowel issues were always worse around my period until I had my periods stopped then the bowel issues were erratic.


How do you differentiate between your endo pain vs. IBS pain vs. IBD pain?


Endo pain is usually quick, sharp stabbing pains deep inside and low down in my abdomen, commonly in my lower back too. IBS/IBD pain is more of a cramp right under my belly button, feels like a knot being tied in my bowel and it lingers for a while.


What's been the hardest challenge you've faced in living with endo / IBD / IBS?


Holding a job, friends, a social life, school/college. Having to cancel plans all the time or calling in sick too often because of pain or needing to be near a toilet. It is relentless, there's no break from it. The pain is there non stop even if it's more of a background ache and you can get on with your day, I cannot remember the last day in nearly 10 years that I haven't had some sort of abdominal pain from endo or IBS.


What is your one pro tip for living with endo / IBD / IBS?


Always keep a hot water bottle near by!!

But also don't beat yourself up if you need a day/week on the sofa, listen to you body! Trust your body, if it gets too much tell a doctor! Don't just exist with the pain, doctors can help if you persist with telling them how it's affecting your life!

Morgan

@mosurvives

Endometriosis stage1-2, IBS mixed & Crohn's Disease


What do your bowel issues feel like with having endometriosis?


I get pain with bowel movements from the endometriosis, especially when I'm having constipation. The hormone fluctuations that cause menstruation seem to correlate with more IBS-D symptoms for me.


How do you differentiate between your endo pain vs. IBS pain vs. IBD pain?


I still have a really hard time differentiating between endo pain and pain caused by gastrointestinal issues. Typically, my endo pain feels more like muscle contraction and comes in cycles where my gastrointestinal pain seems to be more consistent and often relived to some extent by passing gas or having a bowel movement.


What's been the hardest challenge you've faced in living with endo / IBD / IBS?

After having an endo diagnosis for almost two years and struggling with the condition for almost five years prior I became pretty used to using over-the-counter NSAIDs (specifically ibuprofen) to help with the pain. Once I received my Crohn's diagnosis I was told that continuing to use those medications would be unsafe and shouldn't be taken with an inflammatory bowel disease. Because of this I've had to figure out alternative methods to help like breathing techniques to get through contractions and having a good heating pad. This became a lot of extra communications with both my OBGYN and my gastroenterologist to work out the best ways for me to manage my conditions in a way that works for me.


What is your one pro tip for living with endo / IBD / IBS?


Find a really good OBGYN and GI doctor that respect your opinion and want to have an open dialogue with you about your treatment options, you don't need to stick with one just because they're the one who diagnosed you. It's so important to not feel pressured into making a treatment decision without knowing what options are available to you and are reasonable for your specific condition.


Di “Diana”

Maryland, USA

Endometriosis Stage 4, deep infiltrating, widespread endometriosis, IBS-D & Microscopic Colitis (MC)


What do your bowel issues feel like with having endometriosis?


My symptoms feel brutal. Heaviness and bloat throughout my abdomen almost 24/7.


How do you differentiate between your endo pain vs. IBS pain vs. IBD pain?


Endo is more isolated to my left ovary and the whole left side. IBS is usually gas-like pain, and my MC is upper abdominal pain after a bowel movement (which is how I know it’s not endometriosis).


What's been the hardest challenge you've faced in living with endo / IBD / IBS?


Learning my body and how/when to differentiate


What is your one pro tip for living with endo / IBD / IBS?


Remind yourself you aren’t a burden, even on your worst day.

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