Life with Endometriosis & 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 irritable bowel syndrome (IBS). Often, people who have both 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 two types of pain.


We hope this collection provides awareness, education and a space for others to realize they're not alone.


Rachel

Leicester, UK

@littleblondeblogx

Endometriosis & IBS-D


What do your bowel issues feel like with having endometriosis?


My bowel issues are actually closely linked to my endometriosis, when I’m having an endometriosis flare I tend to suffer with my IBS too. Sometimes IBS will flare up on its own. It’s tough to deal with them both at the same time.


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


My Endo pain is usually a lot more intense and worse than my IBS pain, my IBS pain usually comes on in waves and is more of a cramping pain higher up in my stomach than my endo pain. My IBS pain also comes on mainly not too long after eating rather than at any time in the day. Sometimes when both are really bad it’s hard to tell them apart at all.


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


Being taken seriously. Because others can’t see either conditions they assume that you're better if you do just about anything. Trying to get back to having a normal life is not easy, planning around two unpredictable chronic illnesses is hard but necessary.

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


Find what works for you, a routine, treatment, specific diet, supplements, CBD, what works best for you, stick to it. It takes a lot of trial and error to find what works for you but it’s worth it when you do.


Camille Norton

Ottawa, ON

@camille.norton

Endometriosis stage 1 (possibly 2, my second surgery is pending!) & IBS mixed


What do your bowel issues feel like with having endometriosis?


Extreme stabbing pain in my stomach, severe bloating, and back cramping. The unknown of having stomach problems means I’m either terrified to not be near a bathroom, or that I’m unable to go at all. The pain can be unbearable at time.


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


It is definitely hard to differentiate. Since I changed my diet, my stomach problems have lessened, not to mention I can see direct correlations with how I feel depending on what I’ve eaten. My endo pain is a lower pelvis feeling, where as I feel my bowel pain tends to hurt me a bit higher, and can be relieved with a bowel movement.


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


The impact on my quality of life. The anxiety I feel around bathroom problems almost outweighs the pain from my endo. I live in fear of being in an environment where I’m not near a bathroom, and am terrified of eating out. It has made my anxiety so much worse.


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


Finding an anti-inflammatory diet that works for you! Not the same foods trigger everyone the same, but eliminating foods and finding what those triggers are for me has immensely helped with lowering my flares. Also, eastern medicine has helped me far more than western medicine. Finding a good team of naturopaths, pelvic floor therapist, osteopaths, etc., has helped me far more on a daily bases than traditional doctors have. Lastly, trust yourself! Doctors may push different treatment methods on you, or tell you information you question. Don’t be afraid to trust your gut and make the right decisions for you! Don’t be afraid to question what you’re told and ask for second opinions. You know your own body best.


Lisanne aka L.A. Schnupp

Ottawa, Ontario

@l_a_schnupp

Endometriosis Stage 3 & IBS-C


What do your bowel issues feel like with having endometriosis?


They are so unbearable that I can't move, or sit. I always get so scared but know that it will pass.


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


My endo pain is more lower abdomen, ovary pain, and painful cramps that stop me in my tracks or wake me from a dead sleep.


My IBS is more of nausea, pain, and mixed with anxiety.

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


My hardest challenge would have to be having proper intercourse, and not knowing when the pain will come. It's like walking on eggshells.


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


Breath through the pain. It does get better.

You're not alone, and most of all you're a warrior!!!!

I've learned to love my heated blanket and heated seats in my car


First name: Sophia

Hong Kong / Boston / New York

@secretly_a_grandma

Endometriosis Stage 3 & IBS mixed


What do your bowel issues feel like with having endometriosis?


They feel very connected.


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


To be honest, I’m not quite sure yet— I just had excision surgery a few months ago and so I’m now learning to differentiate the pain and figure out the new sensations I’m having post excision.


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


I am an artist and an actor, and I use my body a lot in my work. Having multiple chronic conditions makes it really hard to commit to the demanding lifestyle of theatre school/acting and I am trying to learn how to follow my passions while still taking care of my body. It’s been hard watching my friends succeed in their careers while I feel held back by my physical conditions.


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


Advocate for yourself! You know your body best. Trust what it is telling you.

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