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Endo and GI issues

Hi all, I was diagnosed with endo coincidentally by my surgeon who saw lesions during surgery to remove my gallbladder. Before that, I was diagnosed with IBS due to severe bloating, gas, and diarrhea. My period is normal, regular, and the majority of my most painful symptoms during my period are GI related. I wouldn't say I have severe menstrual cramping. I also have pelvic tightness and bladder symptoms. I'm starting to feel a bit crazy because I keep having to tell my doctors that my periods aren't that painful. My question is does anyone else's endo symptoms seem to be mostly GI related, with little/average menstrual symptoms?

  1. I hope you don’t feel alone. I’m not exactly in the category you want to hear from (I DID have painful periods; I’m now in menopause.) But yes to the bowel issues, pelvic tightness, repeated IBS diagnoses, feeling crazy. I think in my case my bowel issues now are due to adhesions. (it’s like a different but RELATED disease.). Did your doctor find adhesions during that surgery with coincidental endo diagnosis? Given that they know you have endo it doesn’t seem like a stretch to think adhesions or lesions on your bowel are a cause of your symptoms. Hoping you find a doctor with empathy and curiosity and an open mind!

    1. Hi Martha, thanks so much for your reply! My doctor didn't mention adhesions, just what he called "gunpowder lesions" in my abdominal region (apparently they look like black powder spots hence the name). It's hard not to feel crazy given that my symptoms don't seem to match up with the majority of people, but I'm learning this disease takes so many forms and every case is so different. Thanks for your well wishes and wishing the best for you as well!

    2. I'd like to think the GI side of it, spots found over the abdomen or bowel are more common than is talked about 😔 It seems it depends on who we have for a surgeon sometimes and whether they assess they want to operate on certain things they see or not. It's frustrating but 💯 to saving and wanting to share images

  2. I can imagine the look of gunpowder lesions. I hope you won’t develop more of them. When I get surgery I want my surgeon to save whatever she might end up excising, if anything. I want to SEE it. I want to go around to schools and say Look girls, don’t let your doctor or anyone tell you what is a normal level of pain. I’m 54. We just didn’t talk about these things much back when I was a teenager or even in my 20s.

    1. They look like brownish/black scattered spots. Definitely ask your surgeon to take pictures, I've heard some even have video from the surgery. You are so right, we need more awareness. We're kept in the dark and guessing about everything. I'm in my 20s and still find most people don't know enough about this

  3. Your symptoms are almost exactly mine but add daily distension with that tightness and all the other symptoms. I see a pelvic PT and they do Myofascial? Massage over that tightness, it helps a little bit. I also find laying down flat and doing a tummy massage helps acutely. Bowel patterns alternate C/and D for me though and I always feel incompletely evacuated no matter what... It's exhausting isnt it? You are not alone...

    Periods are sortof a relief bc I can blame my symptoms on something tangible (sometimes they're lesser than the daily grind tho) and the cramps I get then are related to periods.

    So they found lesions on your gaul bladder? I had stage 3 endo and ovarian cysts removed recently and chronic bladder inflammation the report said. I am 3 months out since the surgery and was told discomfort can be related to post-op, but I feel like that shouldn't be anymore... idk 😮‍💨 Next pursuit for me is finding a nutritionist who's kindof in integrated medicine and specializes in women's health like PCOS and Endo and familiar with the digestive issues side of things. I'm at my wits-end, just depressed by my body.

    1. I just recently started PT and it does help a lot. I have the same bowel symptoms and it is completely exhausting!

      Second what you said about periods, it's nice to have something to blame lol I've had worse GI symptoms unrelated to my period so all month long it's always something!

      They found lesions near my gallbladder, I'm not entirely sure where else. Did you have bladder symptoms as well? My surgeon just called it "pelvic endometriosis." Did surgery give you any relief?

      Good luck with finding a nutritionist I hope you can find someone who can lead you in the right direction! It's hard to have hope when you've suffered for so long. Hang in there!

    2. Hi . I see that you posted this several weeks ago. Have you since found a nutritionalist who can help? Has your discomfort improved at all? Thinking of you and wishing you the best. - Lori (Team Member)

  4. Thank you for checking in! I am seeing a Nutrionist now who's more so in the line of IBS and FODMAPs work. We'll see where it gets me, but thank you

    1. I hope it helps and that you get some relief. Warmly, Lori (Team Member)

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