Question for All Women???

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RxCrohnie
Regular Member


Date Joined Sep 2006
Total Posts : 146
   Posted 10/2/2007 8:44 PM (GMT -7)   
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
35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistulas, joint pain. Kidney Stones. Dx with Migraines 2002 and Ovarian Cysts along the way.  Dx with Fibromyalgia in 2007.  Now receiving Humira, Topamax 300mg daily, Cymbalta 120mg daily, Prevacid 30mg, Maxalt, Vicodin and Ultram as needed, Fish Oil, and Multivits   
 
RxCrohnie 


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 10/2/2007 9:20 PM (GMT -7)   
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?

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/3/2007 2:15 AM (GMT -7)   
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!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/3/2007 6:50 AM (GMT -7)   
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*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


RxCrohnie
Regular Member


Date Joined Sep 2006
Total Posts : 146
   Posted 10/5/2007 8:28 PM (GMT -7)   
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
35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistula colon 2006, Rectovaginal Fistula 2007, Joint pain. Kidney Stones. Dx with Migraines in 2002 and Ovarian Cysts with Endometrosis 2001.  Dx with Fibromyalgia in 2007.  Now receiving Humira, Topamax 300mg daily, Cymbalta 120mg daily, Prevacid 30mg, Maxalt, Vicodin and Ultram as needed, Fish Oil, and Multivits   
 
RxCrohnie 

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