Traumatized and Confused

[CloverGirl]

Okay, I'm totally confused. I just had one of the most terribly painful experiences of my life--I just had a cystoscopy at my first official urologist appointment. It was TERRIBLE. I was in so much pain I started crying and near screaming. Despite it though, he said there were no major, obvious problems with my bladder. He said that because I had no pain when I voided (only cramping and aching right after) that the pain and frequency was not enough to say I DID have IC for sure. He suggested it might be Endometriosis that may not have been found on the first laprascopy I did. It frustrated me though as my GYN put me on Elmiron, which seemed to drastically HELP, and now that I've been off of it for a few weeks (darn stomach infection) the pain has since returned and gotten worse as I go. Wouldn't that make sense it WOULD be IC? I thought not everyone necessarily has the same symptoms all at once. I have abdominal pain most of the time, ranging in severity depending on it seems what i eat or drink, stress level. I have to urinate quite frequently, and it aches after I do, though not during as I read it does many people. The biggest problem has always been that throbbing pain. Has anyone else had similar experiences? One doctor sayin, hey this is what it IS and another saying, well, it COULD be, BUT... He looked me in the eye and said he had no idea and there was no definitive way to really tell. All I got now is a painful pee-er and no answers. :(

[ICNDonna]

A cystoscopy done in a doctors office will not usually identify interstitial cystitis. When I had my first cysto, my bladder appeared to be completely healthy and normal. It was only when it was distended under anesthesia that the IC became visible.

Donna

[BrittanysDance]

Donna is correct - only a cysto with hydro will determine it. Also - your uro sounds a bit :loco: *sorry* but you absolultey do NOT have to have pain when you void with IC. Actually its just the opposite in most (I know it is for me) - I have pain when my bladder has too much in it and I can get that "achy" feeling after I void as well. So - it sounds to me like your uro doesnt know enough about IC to make any type of determination about it, but thats just my opionion.

I'd get another opinion if you are able to. I do hope you feel better soon.

Hugs,
Brittany

[turnaround]

I would absolutely agree that another opinion is warranted. I also have no frequency, urgency or burning, but terrible pelvic pain. My doc wanted to do an in-office cysto, but after reading many posts about hydro/cysto I insisted on just getting the hydro/cysto under anesthesia. My first two uro's were barbaric, and I am so happy I have found a compassionate uro who absolutely believes IC exists and tries to treat it as the horrible disease it is. Best of luck to you!

[Want2BPainFree]

You know, after reading so many posts here and my own experiences, I've pretty much determined a few things about urologists. And this is just my observation and opinion.

1) If you're a woman, they don't know anything about how your plumbing works in conjunction with your reproductive organs

2) They deal mostly with men who have ED and prostate problems and therefore cannot relate to a woman with a complaint

3) They don't stay on top of IC research.

4) Because there is no definitive way to diagnose IC, and it is only a process of elimination, most aren't willing to go the extra mile to eliminate.

See a urogynecologist. I find they know and understand more.

[ABliske]

That's awful you suffered all that pain for nothing. It doesn't sound like endo to me. That's what an OB tried to tell me it was. I also think a hydrodistention might get you answers. It didn't help my pain and I think the 2 hyrdos I had (one with capsacian) made my bladder like 10% smaller in size. That was the change from the first to the second anyway. At least I finally had an answer though. I wish you luck! Many people find relief with a hydro too!

[LuvMaui]

I'm so sorry you had such a horrible experience. However, it does reinforce my decision to remain "Informally diagnosed" with IC.

I choose to go with the least invasive treatments. I did have an ultrasound and catscan.

Until a Doctor can tell me without doubt that a procedure will give me a diagnosis or relief, I will not allow a treatment that requires a catheter.

I'm not saying that everyone should think as I do... I just feel that I know what's best for me. :)

[ABliske]

That is probably a good thing LuvMaui. My uro said a lot of Drs. do not believe a hydro is necessary for diagnosis anymore. He wanted to see what kind of stage my IC was in though. I probably could have gotten treatment for the IC just the same without having to go through 3 awful surgeries. (1 was a laparoscopy)

Since my treatments have not been successful, I find it somewhat comforting to know for sure what it is. I don't think I would have come to the conclusion on my own, but it was one possiblities I thought of when I researched pelvic pain on-line.

[CloverGirl]

Yes, I think this uro was pretty :loco: as well. He actually really ticked me off. First, his questioning was very abrasive. He kept asking me things and when I'd start to answer, he'd mow them over and start saying something else. I felt like I was being interrogated, he'd seem to criticize my answers. I got the impression that he might not even really believe in IC at all. He even said he didn't think Elmiron really did much of anything, even for people with IC, and called it and the Hydroxyzine "Voodoo". I wanted to grab him by his coat and shake him and say, "Then do tell me why these things have HELPED me, sir?!" It was extremely frustrating. I have a GYN that had originally diagnosed me, he's a doll. He's very highly recommended and knows his stuff. I would think if he felt so strongly about endo he would run further tests, or insist on other treatments or something. He said to me that we've ruled everything out, and you have most every symptom. I mean, it just makes sense. I eat or drink certain things, and my body reacts the same way almost every time. PAIN. I had a clementine today with lunch and shortly after, I felt pressure and aching in my abdomin. It felt almost like it swelled. It flared.
SO...I think I may just sick with the GYN for the time being, ask him for another referral, or maybe search for someone myself and go from there. I'd like to get the hydro done. The uro said that he didn't believe hydro should be done at all, that it does more damage than good. Then, how do they come closer to solving someone's problem? If it's causing me this much pain, I'll take more if it means being closer to better treating it. I'd say we're all pretty used to it by now! He also mentioned something about electrostimulus or something to that effect...

[Claredale]

I have read alot of research out there about the hydro not being conclusive, but I have read so much more and have personally been able to talk to people that had their IC diagnosed by the PST and the hydro as I did. Everyone of them said just knowing what their bladder looks like from the inside is truly helpful. They all say that they were so relieved to know that their doctor knew what severity they were working with.

Yes, for some people the hydro under anesthesia is very helpful in their treatment, for others like me, it wasn't. But it was a diagnostic tool to put a definite action plan of treatment started for me. My original doctor was a uro and he knew a little about IC and listened to me and treated each and every one of my symptoms as best as he could, even my pain and nocturia. My IC progressed after a few years and even though the first hydro didn't make me feel better, it actually caused more pain for a few days, but he made sure I was comfortable, but when my my pain became a constant symptom, he did another hydro and found that I indeed had progressed to severe IC and referred me to another doctor that could continue with the treatment that I needed.

I have truly been lucky with my doctors. I get so upset each and everytime when I hear that people still are needlessly suffering due to lack of their doctor being educated in IC and they go from doctor to doctor looking for help. This is certainly just my opinion, but I feel that finding the right doctor, and having the hydro was the best thing for me. I have had IC for 20 years now and I was diagnosed fairly quickly even by todays standards. When I first started having my symptoms of freq/urg and some retention, my gyno did an ultrasound and she did find a very small cyst on one of my ovaries, but definitely didn't feel that would cause my freq/urg, so she told me to go to a uro.

I just went to the uro that my husband went to. He was certainly nice enough, just didn't know about IC so he pretty much made me feel that I was just too stressed with having 2 young sons and gave me some antidepressants and sent me on my way. I am aware now that antidepressants are used for treating IC, but for me, all it did was making me more emotional plus still had to deal with my freq/urg which was so out of control. I then talked to my PCP and he referred me to the doctor (another uro) whose practice is very well known in my area. I was diagnosed within my 2nd appt with the PST, then a hydro/cysto a couple days later. My uro never made me feel that I was doing anything but trying to find what meds/treatment would allow me to feel as normal as possible.

I have been to 2 other doctors since my doctor that diagnosed me. I only changed from my prior doctor because she moved to the other side of the state. After I saw the doctor that bought her practice (as a friend/fellow ICer of mine says, we don't know if she actually knew where the bladder was!). I quickly contacted Dr. Doggweiller and she emailed me back and told me the name of the doctor that would be able to help me. My current doctor did pick right up with my care that was working, plus would tweak my meds when necessary since my body, as my prior doctor used to say, conquers the effectiveness of many meds, so I have to change them up from time to time to make them as effective.

T83

[LuvMaui]

T83, You are indeed fortunate to have found good Doctors. I am going to search out a now Uro, but I'm having difficulties finding one that has good knowledge in treatment of IC. I did find one, but she doesn't take insurance at all and my insurance will only cover 70% of an out of network Doctor. So the search continues.

:) Your experience gives me hope.

[jen74]

I am sorry you had such an awful experience. I agree with the person who said urologists usually do not know much about IC. They deal more with men issues. The first uro I went to when I started having issues, well lets say my experience was similar to yours. Very painful!! I will never have another cystoscpy awake! This doc actually had the nerve to tell me IC was not a real disease. Luckily I had researched it and asked him if he had ever heard of the ICA( interstitial cystitis Association). He looked at me and my hubby with this blank look and then said only women over 45 or 50 have bladder issues. We basically walked out and never went back to him. In fact when the urogyne I saw who Dx my IC, he did a cystoscopy, but he was nice enough to sedate me( I insisted I be sedated). That is when I was DX with IC. I did not have to have a hydrodistention. I hope you can find a better doctor soon.
Jen

[mayray]

after having being told I was crazy, wanted drugs, my biological clock was ticking, etc. I had a meltdown one day and told one cocky urologist that unless I grew a penis (excuse me) I would never find out what was wrong. Many of them think that the only thing that happen with women are bladder infections, bladder cancer or maybe in need of a bladder lift when older. thankfully, some of them are changing their view. I saw a female uro and it was no better. She accepted the probability of IC but told me that no one with IC is sick enough "to be on disability." I am surprised, quite frankly, that most of them remain sane after they way we are treated. we just have to change the views of doctors and continue to lobby for more treatments for so called orphan diseases.

[CloverGirl]

I mean, I would think that respectable doctors would jump at the chance to figure this stuff out, make break-throughs, and try and just plain fix us! I can't believe all the crud we all have to go through, that uros can sit back and look us in the eye, people in SERIOUS pain, and tell us basically that we're crazy! There are many of us, out there, hurting, suffering. My uro told me that I wasn't alone and that he has countless women coming in complaining of similar things and he just doesn't have an answer for them. Well, HELLO! Then number one, we're NOT crazy, and this thing IS REAL, and it's in our BLADDERS! Everything adds up. It just makes sense. I would just think that in this day and age they would have better ways to figure this out, that they would find the answers, considering this is something that is a growing problem. If I was a doctor, heck, I'd be all over this!