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Crohn's Disease Forum » Your Story » When do you get the right diagnosis?


10-19-2012, 11:55 AM   #1
boast
 
Join Date: Oct 2012
When do you get the right diagnosis?


All started when 26 ,4 years of severe pelvic pain, going on morphine to try and get by.
Then told at 30 that i have endometriosis,which i carried on with many different medications, and 5 operations and now hysterectomy, not wanting anymore than 3 children thought this the best solution , but all this time having bowel problems,not nowing this as on such meds.
1 year now after sugery and none the wiser, severe pelvic pain again bowel problems, and problems when pass wee, sent for scan today pelvic area all fine.i feel like no one is listening to me please help me i am 40 now and had
enough.
10-19-2012, 12:17 PM   #2
SarahBear
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Hi, welcome to the forum!

I'm sorry to hear about all your troubles. Crohn's and endometriosis can have very similar symptoms, and it's also important to consider that they often occur together. Are you seeing a GI, and have you discussed this with them? What has your doctor mentioned as a possibility?

I think endometriosis can return after a hysterectomy (just a quick google search; someone else probably has more information). Have you looked into this possibility? The pain when peeing makes me think that might be more likely.

Are you taking any medications now? What have you taken for the bowel problems (if anything) in the past? What tests have you had done? May I ask what exactly your symptoms are?
10-19-2012, 12:28 PM   #3
Angrybird
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Hello and welcome to the forum.

I was also wondering if you are seeing a GI doc? What are the bowel problems you are getting specifically? Are you still seeing your doc to make sure this is not to do with the endometriosis?

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
10-19-2012, 12:48 PM   #4
boast
 
Join Date: Oct 2012
am taking voltarol, co codamol, and mebeverine.
have severe pain in pelvic area with bloating and loose stools,pain does not go away, went for pelvis scan today said ok.
But sure that for years have been putting with some kind of bowel problem,doctors always go down gyni route.
10-19-2012, 01:02 PM   #5
SarahBear
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Have you had a colonoscopy lately? I believe endometriosis in the colon can cause the symptoms you listed. A colonoscopy would be the first step to diagnosing this or IBD, so you might want to request one if your doctor doesn't suggest it.

Do the symptoms relate in any way to what you eat? Are they worse at a certain time of day? Do they worsen with your menstrual cycle, or relatively the same all month? Exactly where is your pelvic pain (bellybutton area, between the hip bones, lower right side, all over, etc.)?

I ask a lot of questions

Last edited by SarahBear; 10-19-2012 at 01:19 PM.
10-19-2012, 01:21 PM   #6
boast
 
Join Date: Oct 2012
thankyou for your help

I have never had a colonoscopy. I had the hysterectomy last year and was hoping that was the end of it, when they scanned me today they found no signs of cysts on my ovaries.don,t have a cycle each month since hysterectomy.
pelvic pain accross pelvis and under belly button when opening bowels,and to the right hip.
Find gets worse from eating bread swell up;
10-19-2012, 01:25 PM   #7
SarahBear
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Oh gosh, no cycle, I knew that! Haha

I'd ask for a colonoscopy next. As things are, it sounds like it could be endo or IBD (and I'm sure there are other possibilities as well). Are the doctors kind of brushing you off? If you don't feel like you're getting the care you deserve, go somewhere else! Request a referral to a GI (if you haven't seen one yet) and start from there. I'd keep the gynecologist in the loop as well. Could they set up a colonoscopy for you? Since there's a possibly it's endometriosis, it could be worth asking.

Please let us know how things go for you!
10-19-2012, 01:32 PM   #8
boast
 
Join Date: Oct 2012
Thankyou i will do that
it's such a relief to speak to people that actually listen rather than trying to convince you you're imagining things!
10-19-2012, 10:44 PM   #9
David
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Hi there and welcome

You've received some excellent advice. I can only agree that a colonoscopy makes sense.

Please keep us updated as to how you're doing!
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