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I wonder if you have had a cesarian (sp?) or been checked for endrometriosis or adhesions? Or, do you know that the pain is still from the MC?
I know you are still having problems with the pain after the gallbladder surgery and wondered if those things had been checked?
I had similar (from what I can remember of your descriptions) pains when I had adhesions from endro.
Just wondering?.................
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
No, I didn't have a cesarian section.. I was sort of checked for endo but as I understand you don't know for sure unless you do a laparoscopic exam. the ER doc said he saw something funny in the wall once, but when I followed up at the ob/gyn, she pretty much laughed at him and told me to go back to my GI.
Yep, still having quite a bit of pain. In fact tonite, I had major leftsided back pain, around the liver or pancreas, probably .. but whatever. I'm so sick of doctors. The pain is not such that I would go to the ER, so I don't.
I wonder too, wtf it is.. I'm so tired of pain, pain, pain all the frickin time. seems like all I think about anymore..
That sucks having pain all the time - kind of like me saying "I'm so sick and tired of being sick and tired". My husband is sick and tired of me being sick and tired! I sometimes think all he hears is
My biggest problem now is the fatigue. Aches and pains are there but better with the diet. Pain sometimes is there in the weirdest places too.
I hope you can figure out what is causing it. It sucks being like that all the time.
I read your journal and think you are doing great! You do have a lot of will-power! That makes for a world of difference.
I sometimes think I have to fight myself to stay on task. I am my biggest enemy! I use people here on the board to kick my into gear. It sure helps having friends, don't it!
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Yep, pain was so bad at times that I would drop to my knees before the surgery. Since it was adhered to my organs, stretching made the pain worse.
Wonder if any of these strange things are related to each other. Does one problem predispose us to others?
My GP understands the autoimmune issue and the gluten issue but is at a loss as to what will be tolerated by my body medicine wise.
He tries, bless his heart but I am constantly reminding him that I can't take certain things or it will increase the MC problems. Sigh
I am also curious that both of my girls have female related problems, (heavy periods, endo, cysts, problems taking various birth control). They have also told me frequently that they have D when eating various foods. Of course, they won't listen to me regarding eliminating certain foods from their diet. Oh well, bull-headedness runs throughout the generations unfortunately.
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Both of my sisters have female problems as listed above. One sister has constipation, the other has constipation and D and nausia. This sister has had gastric bypass surgery and lost over 140 lbs. Her symptoms, especially with greasy foods and veggies is very similar to mine.
Both my grandmother and mother had a combination of both also? Both of them were diagnosed with a "form of IBS" (which doesn't say a lot, does it)?
I'm thinking that there must be something to this gene thing in my family. Both my grandmother and mother are gone so that can't be researched further, but it might be a good idea to check in regards to my children and their children.
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
perhaps they can test for genes that carry endo? Dunno if they KNOW this info, but they know it for Fibro, and Fibro is as mysterious an illness as any other we have..
I've also wondered about endo frequently. That doc literally LAUGHED at the ER doc's thoughts, saying there is no way you can SEE endo on an ultrasound, and directed me back to the GI. Well, that's all well and good, but here are my thoughts:
When you MESS with things, such as having surgery to uplift your uterus, it causes growth. If you were to scratch your skin, it would grow over. In the same way, if you "scratch" the outter tissue off your innards, it triggers new growth. Sometimes this growth can get out of control, resulting in cysts, tumors, benign or malignant, and stuff like endo, which is basically the uterus growing out of control. NOW, I had my uterine uplift surgery in Sept 2000. Isn't it feasible that this has caused "new growth" (neoplasms) in that area and therefore I have endo??? Why would an OB/GYN LAUGH at this??? Why would one doc laugh at another at ANY time?? Ridiculous. Altho, I can't really vouch for this ER doc's sanity.. he's also the one who looked me right in the face, making me think he believed all of my symptoms, and then turned around and dictated that I was depressed and this was the source of my mysterious abdominal pain.
His theory was that women who have been abused at some point, mentally or physically, most often during the adolescent developmental stages, are prone to having abdominal pain, and mysterious abdominal anomalies in adulthood. Now, granted I WAS abused physically AND emotionally thruout my teen years, I DON'T believe this has ANYTHING to do with my current condition.
I don't know too much about female issues, as I've only had run-of-the-mill stuff myself - and also fibroids, but the fact that you've had surgery makes me think scar tissue issues should be ruled out, rather than dismissed! Is there a non-invasive way to check into it, or is laparoscopy the only way to go?
I *do* know when I was first sick (with c-diff) and I was in so much pain, but I actually called my OB-GYN (I didn't have a GP at the time) since I felt *certain* female issues were the source of my pain...the JERK never returned my call, but I found a wonderful doc at our urgent care who diagnosed c-diff, found me a GP and got me started figuring out what was going on....
Yes, surgery of any type causes scar tissue. Sometimes this can be substantial, and sometimes docs will go back in to *clean up* the scar tissue (which in theory creates less scar tissue than the initial surgery.
Christine, there is a condition that is similar to endo/fibroids that happens within the uterine wall...I can't remember which endo or fibroids its most similar. I'll try to look it up for you, because a thickening of the uterine wall would be visible on the ultrasound.
GYN issues do run in families. I got a double whammy with both my grandmothers probably having endo. My Dad's sister had it bad, and his other sister had bad fibroids.
My theory is that when you have a food sensitivity, it causes bloating which stretches the abdomen, so if you have endo, or scar tissue, or anything along those lines, it pulls on it making things hurt. I get more pelvic pain when I've eaten gluten. When my MC started up, knowing that my uterus is adhered to my bowel, that was my first assumption was it was GYN in nature. My GI didn't think so, and I seem to have gotten things resolved. But if it had gone on longer I'd have been working harder to get my GI and GYN to work together to resolve things.
Well, I frankly don't want surgery to correct surgery.. but I dunno..
The surgery was done in Sept 2000 and the REASON behind it was not only because my uterus had "fallen", it was because sex hurt at the time. Course, that coulda been the PARTNER, not my innards, but who knows. The psyche works in mysterious ways!!!
Anyway, February 2004 is when all of my pain started. I did have C Diff also, and got antibiotics for that quite awhile ago.. I know C Diff has a high risk of reinfection because it's everywhere and my immune system sucks, so there's always THAT possibility, which sucks, because the antibiotics to kill it almost killed ME..
Then right after the C Diff my gall bladder "spoiled" and had to be removed..
Right after the gall bladder was removed (about 2-3 weeks after) I started to have a euphoric week or two where I had very little pain, but once again it's progressed back up to a point where I'm seriously considering going "back in" to see SOMEONE about it. I think I'd sooner poke my eyes out with a fork than go back to EITHER of my GIs tho, so maybe I'll just stick with my GP. She is probably annoyed by me, but she seems to be the only one who actually gets to the root of my problems. She is the one who discovered the C Diff tho I was being treated by multiple GIs at the time, and she is the one who led the way to discovering my Gall Bladder, even tho I had 1 GI at the time who I was frequently seeing.
Anyway, I'm just so sick of docs. Going to my GP is great and all but I'm afraid she's going to run out of things to find wrong with me, you know? and just say "there's nothing wrong with you, it's in your head" like everyone else.
Anyone else get that "it's in your head" crap constantly??? it's like if you're on an anti-depressant, they just ASSUME that's what's wrong.
It sucks that the doctors can't realize that you alone live in your body. You should know that something is not right.
I literally got dramatic when going to my GYN - every feeling of pain I had, I magnified 10 fold for their benefit so they would know that something was wrong!
It did take microscopic surgery to find the problem, unfortunately. It isn't a bad deal though. In and out and a bandaid cover. They did find that the scaring was pretty bad (on me). I was also told that the scaring can continue to return. I have been lucky so far and not had any problems. Well, not many!
Hopefully you can find an answer to the pain. I can't believe it is your diet. Aches, maybe, pain - NOT. Not to the extent you have them.
Take care! I hope you can find an answer soon. You can't continue to live your life this way. It just isn't right!
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Christine, re your GI's. I see that you live in Minnesota. Have you ever been to the Mayo Clinic? They are rated #1 in the country for digestive disorders. Also, if you were to go there, you also could be seen by others - eg. GYN - and all the docs could confer with one another. That's how it's done at Sloan-Kettering in NYC for cancer patients - a multi-disciplined approach.
There is a GI at Mayo who specializes in CC and LC. His name is Darrell Pardi (click here http://www.mayoclinic.org/gi-rst/12035106.html ). In all of my googling on the internet, he's the only GI I've found who lists CC, LC or MC as a special interest.
As for being told "it's in your head," I do not subscribe to that theory. Why? I was misdiagnosed last year as having IBS; my GI suggested a psychiatrist. Instead I sought a 2nd opinion and was diagnosed with LC! The "treatment" probably wouldn't have been much different. But the point is: doctors can be wrong. They are only human (despite some anecdotal evidence to the contrary!). You are too young, Christine, to be having this pain. Listen to your body and trust your instincts. Good luck!
Thanks gals.. I never did think it was in my head.. but it bothers me that OTHERS might think it's in my head, like I'm just some mental case. I recall a time not too long ago when I was a medical assistant working with my current GP, and when the "crazies" would call in for pain meds.. one had fibro and would call relentlessly EVERY DAY. I didn't think she was crazy really, maybe just overly depressed and in need of attention, or a drug seeker.. but I was annoyed by her, and I hate to think I'm "that person", you know? I guess the good thing is that my GP has worked with me, has known me for years OUTSIDE of medicine, like we're pals, and she knows I'm not full of it, I think.. not SURE of that LOL I haven't ASKED her, and I'm sure if I did she'd give me a "fluff" answer like "oh NOOOO I don't think you're CRAZY" while tying on the straight jacket.
But you're right.. I shouldn't have this much pain.. and I'm sick and tired of it.
I once upon a time had an appointment scheduled for the Mayo. 3-5 days. I took the time off of work and everything. THEN, this lady at my GYN office (one of the Nurse Practitioners) was telling me about my current GI. She had a C Diff infection and she said when they didn't know what was wrong with her, he tested and tested until he figured it out and cured her. He treated her like she was one of his many children. I saw hope in this, and instead of going to the Mayo, went to him.
Now, after all of my gall bladder stuff, I'm afraid I don't have any PTO left for quite awhile. Not even sure I"ll have any by December. So if I miss ANY time off of work, it's unpaid, which I really can't afford. So I do have an interest in going to the Mayo, I really really really want to... but I can't give up that work time. I live VERY paycheck to paycheck and really have NO room for error. Makes me SAD :( We live in a country where we have to put work ahead of our families and our own health. My boss still gives me a hard time (and he's NOT kidding) about the time in November 2003 when my son broke his arm and I had to take 3 unscheduled days off. He broke his elbow and had to have surgery and 3 pins installed, as well as a cast, after the first week, and I got NO sympathy, just grief for taking time off. I'm constantly told that if I can't be more flexible with my schedule, I won't recieve the promotion they have been dangling over my head for the past year, which is right around the corner, in July. It's really a sorry state of affairs.
I think I'll go cry now.
I do have FMLA, so I probably COULD take the time off and not get fired, but it's going to take some money. I also have MANY medical bills that our last tax return didn't pay for, and a lawyer bill coming up that I'm NOT prepared for. Does it EVER END???
Hi again, Christine. I feel that I know you pretty well. And I know things will work out - YOU will make it happen! Here's a thought to keep you going for now: it often can take 6 months or longer to get an appointment with an expert at a top hospital. Why don't you phone Dr. Pardi's office and see if he can schedule you for January 2006? That way you may feel better, right now, knowing you have taken positive action to get the answers you so very much deserve.
Since you are at risk for c-diff reinfection, how about a call to your GP, pick up what is needed to submit a sample and at least have that rechecked. You wouldn't need to go in, unless there was found to be c-diff (even then probably just prescribe you meds) or if not and further testing was needed. I think there are other antibiotics too that can be used, if the one you were on gave you trouble (I remember Trent asking us about your condition then...you were one sick lady). CAMary had c-diff and had a rough time of it, she might have some input on this.
I sometimes think all he hears is 
You do have a lot of will-power! That makes for a world of difference.
to stay on task. I am my biggest enemy! I use people here on the board to kick my 
into gear. It sure helps having friends, don't it!
