Reading about everyone's experiences I see that many people have been diagnosed with bowel endometriosos. I was just wondering how this was diagnosed? I have been having GI symptoms ever since I was diagnosed with endometriosis and my doctor recommended seeing a surgeon for a colonoscopy.I'm a bit apprehensive because she mentioned things like ulcerative colitis. Any feedback about any of your experiences would be appreciated:)
I found out on my last laparoscopy. I had constant left side pain and bowel issues and was constantly told it was IBS. Colonoscopy, CT, MRI, and blood work all came back normal in relation to bowel issues. But I knew something was off. So I demanded the surgery, and they discovered that it was all over my left side and on my bowel. So unfortunately, a lot of times, it takes the surgery to diagnose it. But I am so glad I did because otherwise I would never have known. I am having a second surgeon who specializes in bowel endo review my case and get an action plan to see if there is anything else we can do. Good luck!!!
@A MyEndometriosisTeam Member My gyno views endo as needing a "family approach" and is therefore really encouraging of patience to see multiple doctors, all being kept in the same loop, and I don't really see an issue with that besides cost. Though endo itself is a gynocological concern, the gyno isn't going to be well-versed on how to treat your bowels or your bladder and kidneys if affected. It shows to me that they really do care and want you to get advice if they admit they don't know everything and refer you to others as well.
I had the Endometriosis removed from my bowel a decade ago when I had a burst cyst. That's the only reason the Endo was discovered. It was there, on an ovary and my colon. Now, a decade later, IBS, Interstital Cystitis are mentioned after for years I have thought Endo was back and was told repeatedly no no surgery. I finally found the right doctor who is willing to do surgery. :) There were no bowel symptoms prior to being diagnosed. Now? Eh it just doesn't come out the way it should. It's not the big snake like poop like it should be. Sorry to be graphic. It's too little and thin.
Well my doctor was great and really listened and was able to remove the endo from my bowel! Sadly it can return and scar tissue can too so I may have to go in again every year or two to have it done again. Dr. Andrew Cook's book The Endo Patient's Survical Guide really helped me get a grasp on things. People rave about him! He will do a free two hour Skype apppintment with you to help you figure out your next move. He may know a good surgeon willing to tackle your case. I have had every test in the book both scan and blood and so many doctors who didn't listen! My Gastro and Gyno both listened and decided the survey was best for me because nothing else was working. My endo caused my bowel to function so poorly I was constantly nauseous, lost 15lbs in a very short time, had constant blood sugar issues and anxiety attacks, and felt like I had constant UTIs. It was all because adhesions on the outside were wreaking havoc. Removing the endo from my bladder and bowel has made all my other issues go away. I no longer take any medicines besides birth control, so no more stomach or bladder meds. I have zero issues with my stomach, bladder, or bowel now. The surgery fixed the main cause instead of just using medicine to help the symptoms! There are plenty of specialists who take on cases like ours. So definitely do you research and find someone highly recommended because this whole "fear of causing more damage" sounds like these surgeons weren't as skilled as they should be. I can only speak for my experience but it has made all the difference!! Wish you the best of luck as well!!! Always here if you have any questions!!
Exactly. You get referred to the GI specialist or whomever can help your endo doc. My endo surgeon is going to use another surgeon to resect my bowel, as this doc does bowel surgeries all day. The endo specialist I see is one of the best,but when so many different organs can get involved, it is a good thing to bring others in. As Elena mentioned above, it does show they care.
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