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9 month post-op, still gastro struggles, now INTENSE pain before bm 9 month post-op, still gastro struggles, now INTENSE pain before bm

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Unread 02-22-2010, 08:47 PM
Unhappy - 9 month post-op, still gastro struggles, now INTENSE pain before bm 9 month post-op, still gastro struggles, now INTENSE pain before bm

I had a da Vinci hysterectomy (kept ovaries) April 2009 (so make that almost 11 months, not nine months post op!). Confirmed endometriosis & adenomyosis. Suspected IC, but not terrible.

I feel SO much better since my surgery. It changed my life. Before, I was in such terrible pain that eventually I just couldn't function. That's why I don't freak out about the occasional IC-type symptom (phantom and real UTIs, etc.).

However, since my surgery my bowels have not functioned the same. I was on Miralax for months and weaned myself off it by using the probiotic Align. Now, instead of going a little all the time and never feeling, well, done, I go once every couple of days and the stools are more normal. Afterwards, I feel done.

The problem? In the last week or so, I started getting extreme - I mean doubled over and/or doing deep breathing exercises to keep from calling out - prior to a bm. It also hurts when I'm going, but mostly towards the beginning. I've had hemorrhoids, and this is totally different. Its a 10 on that goofy scale they make you use in the hospital to indicate level of pain. It doesn't last long, like my pre-surgery pain used to, but I'm so afraid that it'll happen when I'm teaching or something. I did the whole "function with extreme pain" for so long, and I've been so relieved not to be there, that this is really... well, I guess the word is either upsetting or frightening. Or both.

Could this be an endometriosis issue, do you think?

I know I need to see my doctor. But I'm so hesitant to get back on the medical treadmill, and, frankly, I am absolutely loathe to put my husband and children and friends on it again. They've been through enough. They were SO SO good when I was unable to function. I can't communicate how blessed I was and continue to be. I'm upset for me, but I'm 10 times more upset for them.

Ugh. And it's tiresome, you know? Enough already.

My brother's got Crohn's and my dad's got Ulcerative Colitis (which recently spread so he's got both UC and Crohn's now), so you know any gastro complaint will lead to scopes and all manner of tests, even if I didn't have all the other issues. Blah! Treadmill, here I come, I suppose.

Help me, hystersisters. I'm freaking out. Any of you have similar issues?
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Unread 02-22-2010, 09:09 PM
Re: 9 month post-op, still gastro struggles, now INTENSE pain before bm

Where is the pain? Pelvic? Lower left? Lower right? Rectal? Location could indicate what you're dealing with.

I have ulcerative colitis (in remission presently) and the pain is usually accompanied by mucous and blood in the stool, urgency and loose frequent stools.

I have some pain prior to and during BMs but also monthly bleeding which drs now think is endometriosis in the sigmoid colon. My pain is in the lower left side. Had colonoscopy.

You may want to consult with a GI dr to find out source of pain. Most likely will need sigmoidoscopy or colonoscopy to rule out/in cause.

Sorry you're having more trouble. Hope you find out what it is soon and get it solved.

If your pain is during BM, it could be a fissure - they usually hurt during movement of BM and sometimes for up to hours afterwards (burning). That pain is felt in the rectum.

I'd definitely call your dr. A week is a long time to suffer like this.... Is your temperature elevated? Any other symptoms? Could it be appendix?
Unread 02-23-2010, 05:20 AM
Re: 9 month post-op, still gastro struggles, now INTENSE pain before bm

Hi, Calypso.

The pain is pelvic, lower left, which is where I've had pain before with endo and adeno related stuff. Definitely not rectal pain, like a fissure. It's a sharp, stabbing pain, higher up, I guess near my left hip bone, and it sort of feels like an enormous gas pain, but more intense than any other I've ever had. It happens up to 30 minutes prior to bm and sometimes that's the only pain. Other times, it'll pass and then directly before the bm I get the same pelvic pain. No blood and my temp is not elevated, though I've had a cold all week and feel fun down.

A week of once or twice a day intense pain that lasts for anywhere from 30 seconds to a couple of minutes is NOTHING compared to my previous pain experience. I do understand that in normal terms it's terrible, but I was in 24 hour pain before, so this feels fleeting. However, my previous pain did not begin as 24 hours, and part of the reason it did was because I let people tell me "a little cramping is normal" or that nothing was wrong and I must be over sensitive. I'm trying to remind myself that intense daily pain, however fleeting, is NOT normal and okay.

Think I should see my gyn first? Maybe he could get me into the GI office earlier. They usually have a months-long wait for an appointment.
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Unread 02-23-2010, 07:15 AM
Re: 9 month post-op, still gastro struggles, now INTENSE pain before bm

I can only speak from my experience and I am NO DOCTOR!

Your pain sounds exactly like mine. I have read a lot on endometriosis and the rectosigmoid junction is an area commonly afflicted with endometriosis. The area you're describing is right over the sigmoid colon. I had a transvaginal ultrasound first to rule out ovarian remnant syndrome or look for any masses. Then the GI dr did the colonoscopy and did not find any apparent masses or stricture in the colon but did find an area of granulated rash right where the pain is. He believes it's endometriosis since I had major endo in that same pelvic sidewall.

If you have constipation, then it's likely you might have narrowing of the bowel there possibly due to endo. I would definitely go get it checked out.

My GI dr said that pain with passing/moving BMs is usually due to something on the OUTSIDE of the bowel as the inside is not nearly as sensitive. I am suspecting that your endometriosis is active there (but I'm no doctor).

I have surgery scheduled for April for sigmoid colon resection to take out affected part and clean up any more endo they find. I've had this for years though, worse in the last year...
Unread 02-24-2010, 03:48 PM
Re: 9 month post-op, still gastro struggles, now INTENSE pain before bm

So the problem with the rectosigmoid junction is endometriosis and not UC, right? I'm convinced that it's something like (or exactly like) what you're describing. No bm today, and no pain today (though I've been getting little twinges of pain from the post-hysterectomy vc... don't know if it's related or if I'm just getting overly sensitive!).

Oh, by the way, I told my husband about the pain, which I so, so didn't want to do, and he was fabulous, as I expected. He was like, "You feel guilty? Why? I signed on for the long term. Make an appointment with (the gyn/surgeon we like a lot), and I'll come with you."

I have an appointment with him on Monday afternoon, and my guess is that he'll refer me to a GI person. The GI practice here is infamously backed-up... appointments can take 3 months! But I'm thinking my gyn will push to get me in sooner if he thinks that'll diagnose the pain. We'll see.

Thanks so much for your feedback, Calypso.

I'm glad your UC is in remission. My dad is struggling so terribly with it now. Finally got off the prednisone and onto another medication that's a last resort sort of thing. That's so not fun. I can't imagine going through it with endometriosis, too!
Unread 02-24-2010, 05:18 PM
Re: 9 month post-op, still gastro struggles, now INTENSE pain before bm

Yes, the current symptoms are due to endometriosis of the sigmoid colon.

Yes, UC is awful. My sister had it at 19 and had her entire colon removed. Not too fun, but she'd tried all the drugs at that time, and prednisone was ruining her life. It's an awful disease to have. There are many newer drugs out there that seem to help a lot of people.

Happy to hear your hubby is on board. Mine has just accepted the whole medical nightmares by now, and realizes that this is part of my life so his too.

Best of luck at the dr. Hopefully they will find the source of the problem and fix it for good! Keep us posted, okay?

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