Dealing with Endometriosis & IBD

'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. Often, people who have both diseases 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.

Desiree

@DesireeDLindsey

Endometriosis Stage 3 & Crohn’s Disease


What do your bowel issues feel like with having endometriosis?


It’s always hard for me to tell if my pain is from Crohn’s or Endometriosis and every time my cycle comes my bowel issues are 100x worse! I use the restroom a ton for long periods and I don’t like eating. My stomach just hurts like crazy.

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


It’s so hard. I never really know which pain is which. I manage my pain with pain medicine so when my normal pain medicine doesn’t help, I know it must be endo related. I try to keep a heating pad and ginger lemon tea nearby at all times because they are super helpful!

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


It doesn’t seem like I get a break from pain. If it’s not one thing bothering me it’s likely the other. Sometimes I focus more on one thing than the other and it’s likely I’m not even treating the right symptoms. It’s hard when I try to explain my pain to doctors because depending on what specialist I go to they either over treat symptoms or ignore them thinking that they are related to the other diagnosis.

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


Keep a positive attitude and try to do things that limit inflammation in the body. Keep stress as low as possible because it’s not worth the flare up! You’re blessed to still have the opportunity to do what you do and/or help others with what you deal with. Just keep going! Everyday won’t be perfect but as long as you keep fighting it’ll always be worth it!

Shelly

Missouri

@humble.seed.yoga

Endometriosis Stage 1 & Ulcerative Colitis

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


The colitis feels more like a cramping of muscle. I can literally feel my colon tremor and shake. The endo is a consistent dull ache as well as sharp, stabbing, tearing pain.

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


Keeping up with my movement and eating foods that won't trigger a flare up. It is too easy for me to lose weight and that has been a challenge.


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


Listen to your body! The foods you eat, the amount of rest you need and simply taking it day by day. I may have a great day followed by a really bad one. I never know!

Rachel

British Columbia

@westcoastgardenprisms

Endometriosis Stage 3 & Ulcerative Colitis

What do your bowel issues feel like with having endometriosis?


Ripping, pulling, burning, tearing, and swollen.

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


If the pain is not followed by mucus, diarrhea and blood, i’ll place the responsibility on Endometriosis/adhesions.

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


Moving through the grief that arises when diagnosed with multiple severe autoimmune conditions (I also have interstitial cystitis). Learning acceptance over the loss of a future you thought you would have takes an awful lot of courage, especially when you’re in so much pain.

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


Make yourself a small network of people you feel safe talking to about your diseases. Local crisis line, friends (online and in person), family and therapists. Going through this with help and support is so much easier than trying to cope on your own. You are not an inconvenience, you did not do this to yourself, and you do DESERVE help and support living through these devastating diseases. Feel free to reach out to me if you would like to connect and have someone be a listening ear.

Nicola

Vancouver Island, CA

@nicgibson18

Endometriosis Stage 1 & Crohn’s Disease

What do your bowel issues feel like with having endometriosis?


My bowels often feel very restricted and painful.

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


It can be extremely difficult to differentiate some days between my endometriosis pain and Crohn’s pain but I’d say my endometriosis pain effects the whole lower tummy area, bladder, both ovary side pain, lower back and pelvic pain oh and the whole period problems too.

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


Getting diagnosed and finding treatments that help manage both the endometriosis and IBD symptoms.

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


Be a strong patient advocate for yourself and push doctors to listen to what your body is telling you, as you know your own body best!!

Gráinne

Mayo, Ireland

@grainymusic

Endometriosis Stage 2 & Crohn's Disease

What do your bowel issues feel like with having endometriosis?


It feels like my Crohn's and endo are always fighting for dominance over my bowels, like taking turns on which one gets to make my life miserable today. It's incredibly temper-mental and almost impossible to control at times.

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


My endo pain usually is a pain in my pelvis that radiates to my back and down my legs. Whereas my Crohn's pains is usually a fully abdominal and upper stomach pain that often causes nausea and gas. I've gotten very used to telling the two apart.

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


Eating habits, some food is totally fine to eat one day but a complete trigger the next. Even food that's supposed to be tailored to my illnesses can trigger it if I'm in a particularly bad flare up. I can't fully trust anything I eat because sometimes simply eating is the trigger itself.

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


Warmth, make sure you always have access to a hot water bottle or something warm and comforting like a microwavable Teddy to hold to your tummy on the bad days. A little comfort can go a long way.