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Question for All Women???

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Crohn's Disease
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Posted 10/2/2007 9:44 PM (GMT -6)
Please Help.... Have any of you ever experienced severe pain in your pelvic region almost like a kidney stone pain when the stone is getting ready to come out or a severe UTI.  The pain is like pressure to urinate all the time but no burning upon urination.  I have blood in my urine, bacteria but upon culture it is negative.  My gyno discovered a rectovaginal fistula but small doing a methylene blue test but no fistula to my bladder.  The urologist found no bladder redness or inflammation inside the bladder.  There are no kidney stones outside of my kidneys that should be causing pain (they will later when they come out.)  I had a barium enema to rule out other fistulas and it showed nothing.  The only thing my gyno can figure out is I might have endometrosis because he saw this in the past during a vaginal surgery 3 yrs ago but it was mild then.  He recommended today that I have a hystectomy and if it is on my ovaries to take them out too or if crohn's is in my pelvic region to remove the organs needed.  Have any of you experienced this???  I have read where we have more female problems because of crohns.  I skipped my period from June thru Aug and just had one in Sept because he gave me some progesterone to bring it on.  My GI wants my fistula repaired by a colonrectal surgeon and my gyno wants both surgeries at the same time with both doc's operating so I don't have to be put to sleep but one time.  My severe pain started Aug 22nd, CT's showed only ovarian cysts, no active crohns then during a hospital stay.  I am on Humira.  I do have crohns in my mouth and joint pain. This lower abdominal pain is just unbearable for which I am on Vicodin.  I can't even work due to the pain. I have missed so much work in the passed due to crohns, I do not know how much longer they are going to put up with all of this.  Any help is appreciated. Sorry for the length and the complaining. I am glad I have someone to share with that understands how I feel.  eyes
Posted 10/2/2007 10:20 PM (GMT -6)
Sorry to hear how you are feeling! Just remember to always get more than one opinion before making FINAL decisions: Meds, surgeries, etc. You could have Crohn's in your stomach and even that low. Why don't you talk to your Gastro and have a colonoscopy? I am so sorry but completely understand. How long have you been on HUMIRA?
Posted 10/3/2007 3:15 AM (GMT -6)
I'm sorry that you're feeling so unwell. I have alot of exacerbation of CD during my period, and have an unusual (unrelated I think) condition where endometrial tissue grows in other places in my body, causing pain. Not as severe as what you're describing though.

Get your second opinions as lovepink suggests -- a hysterectomy is a big decision, which commits you to taking hormones (along with all your other meds). I hate to see you do it if they're "not sure" what the cause of the pain is. Good luck!
Posted 10/3/2007 7:50 AM (GMT -6)
I eventually ended up having a complete hysterectomy because Crohns made my monthly cycle so miserable each month. I used to feel like crap 3 weeks out of every month because of my period. Personally, and this is just my opinion, but the Hysterectomy was the best thing I ever did. I would much rather take my one little pill a night, than live with that misery.

Could the pain you are suffering with right now possibly be from adhesions. I saw that you said you had had a surgery 3 years earlier. This is just a thought. Maybe they could do a laparoscopy surgery and just have a look in there to see what might be going on. I sure hope you can find some answers and relief soon.

God Bless,
Gail *Nanners*
Posted 10/5/2007 9:28 PM (GMT -6)
Thank you for all your suggestions. My gyno has suggested the lapro surgery. I am going to talk to my gastro again for his opinion and my family doctor as well. I guess I just want all the pain to go away, don't we all. I am getting a 2nd opinion from another gyno but I have to wait 3 more weeks. Unfortunately, they cannot check for endometrosis with x-rays. My pain is alot worse the week before my period. Thanks
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