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Re: Has anyone had surgery at the CEC? TO: ALYSONFrom: anonymous (anonymous@obgyn.net)Thu Jul 31 01:00:05 2008
At Thu, 7 Jun 2007, Sherri wrote: > >Pamela, >I have been diagnosed with Interstitial Cystitis by my urologist, and my >bladder pain, pressure and other "urinary" symptoms were/are exzctly >like what you are describing! Feeling that i need to urinate, sitting >there waiting, nothing comes out;sometimes I actually have to push on my >abdomen/bladder to try to get anything to come out. Then, when I get >done, a few minutes later, feeling like I need to "go" again. > >IC can only truly be diagnosed by a cystoscopy with bladder distention. >Basically, they knock you out, fill your bladder to capacity to see how >much urine it CAN actually hold at one time. (Most IC patients, >including myself, have bladders that will only hold a very small amount) >They also look in your bladder to examine the bladder lining, b/c most >IC patients have something called Hunner's Ulcers which are the hallmark >of IC. This procedure is usually outpatient though. It can't be done >in the office because you have to be under anesthsia (?sp). If you were >not "asleep" this bladder distention would be EXTREMELY PAINFUL!! > >The main symptoms of IC are exactly what you are describing! Pain, >pressure, urgency and frequency. It feels just like a BAD >bladder/kidney infection of any other UTI. Antibitics can NOT "cure" or >treat it because it is not a TRUE INFECTION!! It is not caused by >bacteria. After awhile, all that happens is that you become very >resistant to standard and sometimes (like me), the stronger antibiotics. >Those meds will not help with your pain, or other symptoms at all if it >is IC. I have heard that there is another test they can give you in the >office that MAY help you discover if you have IC or not, BUT, THIS TEST >IS INCONCLUSIVE. To me, that just means you have had an unnesasary >(?sp) "procedure" or test run. It really can only be diagnosed by the >procedure I outlined above. > >AND, just let me say, it is ridiculous to hear that your urologist told >you that your urinary problems are because YOU don't sit on the toilet >long enough??!! "Gee, doctor, is that really your scientific >diagnosis?!" Did they go to med school to learn that? Of course, if >women have a medical problem or complaint that a male doctor doesn't >understand anything about, it MUST be because that us, women, have >caused it, or done this to ourselves!! That was just completely CRAZY to >say to you. > >Good luck, and I hope for your sake, that it is NOT IC! It's nice to >finally get a diagnosis and know what is causing the pain and problems, >but like endo, there is no cure and no definitive treatment. All the >docs want to do is try to control the symptoms, not try to cure the >disease. The few treatment options are "newer" and all the side-effects >have not been discovered yet. Elmiron is one oral drug to treat it, but >in the clinical trials, only 30% of the patients were helped by Elmiron. >Sometimes, OTC pyridium can help a little with the burning when you pee, >frequency and urgency, rarely does it offer much releif from all the >pain. (at least for me) The other treatment is called DSMO injections. >You go to the office once every week or 2 (for 6 weeks) and get >catherized so they can put the DSMO directly into your bladder. IF it's >gonna work, it can take up to 3-4 weeks after your last injection to >notice any relief. The main side-effect with that one, is the DSMO >makes you REEK of garlic smell. Don't ask me why, but it stinks and >everyone notices!! Very embarassing!!! These did not help me at all, and >I forget the stats for that one, but the STRONG garlic smell is totally >disgusting and you can't wash it away! LOL > >Sorry it's sooo long, I guess, I'm on my soapbox! LOL Good luck!! > >At Fri, 21 Jul 2006, PAMELA wrote: >> >>Alyson, >> >>Actually I have already been to a very good Urologist. He never >>mentioned anything about me having Interstitual Cystitis. He did >>several Catheterizations along with a Cystoscopy. He mentioned >>something to the fact that I am retaining urine in my bladder. He did a >>Urodynamics Study too. They said that when I sit down to pee I do not >>sit long enough to empty my bladder. I hurry too much. So, he did a >>Urethral Dilation. He said that this should help for a while. Within 2 >>weeks I was back in the ER with another infection (or so they say >>because the Urine Culture came back negative). After that my job was >>being rough on me so I was not able to miss any more time to go back to >>the Urologist to do more testing. I would think though if I had >>Interstitual Cystitis he would have told me that. Do you think so? >>Another thing, since I have been having these urinary symptoms I >>listened to what the doctor said. When I go the bathroom I wait & wait >>& it seems like my bladder is completely empty & then within 10 minutes >>I feel pressure (not really the need to go or so to say) & pain & then I >>go to the restroom & have to pee again. It is really weird. This even >>happens at home where I am the most comfortable. Who knows!!!! >> >>Thanks, >>Pamela >> >>At Tue, 18 Jul 2006, Alyson wrote: >>> >>>Pamela, >>>I have not been to the CEC, but e-mail with someone who was just there >>>in March. She had nothing but good things to say about her experience. >>>Also, I was wondering if your urologist said anything about interstitial >>>cystitis? Not to put you through another battery of tests, but if he >>>didn't already check for it, it might be something to ask about. >>>Alyson >>> >>>At Tue, 18 Jul 2006, anonymous wrote: >>>> >>>>Pamela, >>>> >>>>I had surgery with Dr. Albee and Dr. Sinervo in August of 2004. If >>>>you look back through the archived posts, you will see that there is >>>>nothing bad to be found about either one of them or the CEC. They gave >>>>me a life for the first time in my life. And, I can FINALLY have sex >>>>pain free. I am working 40 hours a week, when I was completely bed >>>>ridden prior to my surgery. >>>> >>>>Good Luck, you are heading in the right direction. >>>> >>>>At Mon, 17 Jul 2006, PAMELA wrote: >>>>> >>>>>To anyone, >>>>> >>>>>I just recently had surgery for Stage II Endometriosis. The >>>>>Reproductive Endocrinologist gave me some souvenior pictures (There were >>>>>2 black spots & 2 adhesions). The Reproductive Endocrinologist who did >>>>>the surgery (He did Laser Ablation) said all my problems would go away. >>>>>The only problem that went away was my pelvic pain. That was the least >>>>>of my worries. All of my other problems that I am having actually got >>>>>worse after my surgery. The Reproductive Endocrinologist (who is >>>>>actually a really good doctor---but be it told he does not specialize in >>>>>Endometriosis) told me that Endometriosis is only in the Reproductive >>>>>area, when I asked him about Endometriosis being on maybe my bladder & >>>>>intestines. I have been having so many problems. Urine problems with >>>>>blood in the Urinalysis but Urine Cultures coming back negative. They >>>>>tell me I have a yeast infection & put me on medicine that does not get >>>>>rid of it & then the next thing you know they tell me I have Bacterial >>>>>Vaginosis & they put on meds for that & within a week I have something >>>>>else. Its like neverending crapola. I just had an Endoscopy & >>>>>Colonoscopy in which the biopsies came back negative. But I had a >>>>>stricture in my Esophagus so they had to dilate it. I was having >>>>>horrible pain in my abdomen that warranted my Colonscopy, but they found >>>>>nothing. Right now I am having horrible mid back pain, along with lower >>>>>stomach pain & pain in my abdomen (its like shart shooting pain through >>>>>my bellybutton that flares into my back). I have my normal constant >>>>>fatigue (I feel like I never get enough sleep) & irritability. I am >>>>>having my normal bloating feeling that I always have along with problems >>>>>with my bladder (It is hard to describe---kinda like a Urinary Tract >>>>>Infection but different symptoms that no one has yet to tell me what it >>>>>could be). I have my Reproductive Endocrinologist telling me to go to a >>>>>Urologist. The Urologist tells me its a Gynecological Issue. Then my >>>>>Primary Care doctor does not want to do anything with me. I have been >>>>>sitting to wait for someone to do something now for a month. I get so >>>>>depressed & aggravated sometimes just not knowing what to do, literally >>>>>in tears. In the meantime I am trying to keep my cool & go to work & >>>>>try to maintain normal life. In the meantime, I constantly wonder why I >>>>>have not been able to get pregnant (so I have the stress of that on top >>>>>of everything else). I finally, approx. 1 month ago, sent an E-mail to >>>>>an Endometriosis specialist asking him if he thinks my problems are all >>>>>Endometriosis related. He stated that they very well could be & for me >>>>>to send my Medical Records to The CEC (Center for Endometriosis Care in >>>>>Atlanta, GA) & I might get scheduled to come in for excision surgery. >>>>>Has anyone ever been there? If so, did you have surgery & if so did it >>>>>go well? If not, what complications did you have? If so, did any of your >>>>>Endo come back? Do you think excision is the best type of surgery for >>>>>Endo? Just let me know. I don't want to go somewhere without having a >>>>>little knowledge first from someone else's experience. >>>>> >>>>>Thanks, >>>>>Pamela
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