Finally DIAGNOSED!

[green_the_fish]

Finally, I have a diagnosis! In addition to my recent diagnosis of pelvic floor dysfunction, I have been diagnosed with interstitial cystitis.
That's right, a diagnosis! :)
Here comes the story... important terms have been bolded...




ACCOUNT #: 64900038

DATE OF OPERATION/PROCEDURE: 10/21/2004

PREOPERATIVE DIAGNOSIS: Urgency and frequency.

POSTOPERATIVE DIAGNOSIS: Interstitial cystitis.

OPERATION: Cystoscopy, hydrodistention.

SURGEON: [privacy]

ASSISTANT: [privacy]

COMPLICATIONS: None

BLOOD LOSS: Minimal

ANESTHESIA: General

INDICATIONS: This is a 15-year-old female with significant urgency, frequency, pain, and pain relieved with voiding. When seen in the St. Vincent’s clinic, her symptoms complex was consistent with interstitial cystitis and she has started on Elmiron and Ditropan. She ______________________________________ [sic] and she is able to go most of the night with only one or two voids, and the largest volume void is almost 400 ml in the morning, but she still has frequent urination during the day. It was elected to perform cystoscopy and hydrodistention to try and establish a diagnosis. She has had negative urine cultures in the past.

PROCEDURE: In the dorsolithotomy position, after induction of general anesthesia, the perineum was prepped and draped in the usual sterile fashion. A 17 French scope was introduced into the bladder, the bladder was reviewed in its entirety. There was significant hypervascularity, with no ulcers, petechiae, or glomerulations. The ureteral orifices were normal in nature and position. The trigone was extremely vasulcar and there was some pseudomembranous trigonitis and squamous metaplasia, more towards the urethra. The urethra looked normal. The bladder was filled with 60 centimeters of water pressure, over 500 ml. We emptied the bladder and we noted pink-tinged urine coming from the scope. We looked into the bladder again and we saw multiple areas of submucosal hemorrhage and some glomerations, but no ulcers. There were some small petechiae. The bladder appeared quite irritated. The scope was removed and the patient was extubated and transferred to Recovery in good condition. Dr. Kropp was present for the entire case. The plan is to have her resume her Elmiron and Ditropan. We will see her back in the clinic and we may refer her to someone who has significant experience with interstitial cystitis, since it is quite unusual at this age group to have this diagnosis. Prescriptions were written for Keflex and Percocet.




I had this operation back in 10/21/04, and I didn’t get a chance to read it or find out my diagnosis until 7/18/05, at the age of sixteen. Why did a whole year go by between the operation doctor writing the diagnosis and a medical profession telling me that I have this illness? It’s the last bolded term that really killed it.

It is quite unusual at this age group to have this diagnosis.

Simply put, the operating urologist just couldn’t believe that a 15-year-old girl could have interstitial cystitis. I was referred to another urologist from there on out. The next urologist treated me with physical therapy for months. Only when that failed was I informed regarding the nature of my illness. Apparently, doctors do this type of thing often. If I weren’t so happy to finally have a diagnosis, I would probably be very angry.

However, the point is that I now have a diagnosis, and I understand the nature of my problem :woohoo:

[dancemomof2]

Glad to hear this I think, or maybe just glad you have a definate answer. Not that I am glad you have IC. Ok I will stop rambling now before I confuse us all. Take care green

[tigger_gal]

fishie ((((hugs)))) I dunno why dr's are so stupid.. you had every right to know, they also should have told your parents.... gggggrrrr time for a new dr he really sucks! I might even consider seeking advice from an atty..
and whats this crap.. about your age.. like IC picks and choses who its gonna attack, it may seem like it has a brain but I am sure it don't pick names and ages...
I am glad you now know whats wrong...
sending you lots of hugs
Brat

[mags]

Sorry that you have ic, but it is nice to finally know huh.

[kadi]

Similar thing happened to me. My doctor didn't believe that IC could start suddenly (I can pinpoint the exact day it started) or that an IC bladder could hold 650mL under anesthesia, so he told me for months that I had a "transient irritation".
Every other doctor I've seen since has taken one look at the photos from the cysto/hydro & my voiding diary & said immediately that it is IC.

I'm glad you finally have a diagnosis and a treatment plan...

Hoping this leads to better & better days for you.

[green_the_fish]

Thanks, everyone.
I wonder why the doctors didn't tell me right away, though. Was it really just my age? I mean, I had this cystoscopy and hydrodistention back in October. Why did they say it looked "a little red", but "basically okay, nothing diagnostic of IC", and then write IC on the report? Why am I just finding out now, ten months down the road? Why didn't they tell my mom?
I'm so confused. Happy, but confused.

[csocain]

Really glad that you finally have a diagnosis, green. There is some comfort in that, but I am sorry that it took so long. Will be praying for you. I know that better days are coming for you. Hang in there!

[kadi]

Green,
I asked one of my first doctors why no one wanted to tell me I had IC. She said that "it's incurable and all the treatments are painful, so a lot of doctors don't want to tell people that." OK, but I don't know why leaving someone confused & in pain is a better option, especially when there are treatments like Elavil, Atarax & Elmiron, which aren't painful... And for me, the instillations are far better than the horrible pain I had at the time she told me this, so I don't know...

Anyhow, that was the answer I got when I asked directly....

[Dixiefireball]

Looks like you was right on the money the whole time. Sorry the doctor wasn't. That was so wrong of them not to let you know what was going on with your body and the reason you was suffering so.
My son is now 13 and we think he has IC but yet because of his age we can't find a doctor that will see him for IC and give him the test because of his inc. which is medicaid.
My doctor would see him but can't because of his group that he is with.
I'm glad you got your answers just sorry it is IC.
sending you hugs and prayres
Rhonda

[emilyrose197377]

Hi Fish, I am sorry you have Ic but I am glad you finally got a dx.

Take Care
Kim

[Annie2]

Fishie, I'm glad the mystery is finally solved for you but am sorry it is IC you must deal with. I know it is a relief to you to finally be out of the limbo-like state you had to contend with. How awful the doctor just left you hanging like that!!!

I hope and pray your Dr will now work earnestly with you to find the best meds and treatments for you and that you will quickly find relief!

[massagedoula]

I am really shocked that they would keep the information from you for this whole time. Perhaps if you had known that you had IC, you would have tried different treatments, or diet, though it looks like you have tried a lot of things from your signature. I personally feel that this doctor(s) that kept this from you were really breaching the patient/doctor relationship. I am glad that you finally have a diagnosis, and I am sorry that you have IC at such a young age though hopefully they will find a cure in your lifetime!

[Cheries]

I had a similar problem when I was diagnosed. After I had the hyro my doctor never came to talk to me. As I was being wheeled out of the hospital I happened to see him in the hallway. I yelled out to him that i needed to talk with him. He came over and I asked him if I had IC. He said, "Oh yes, a very bad case of it" smiled and walked off. I have never felt that much depression in my life as that very moment. It was traumatic to say the least. So, I am not surprised by your experience unfortunately. The good news is that you are in control now and can find the answers you need for your own treatment.

[~*~Christine~*~]

I don't know what to say...I'm happy that you at least have a diagnoses but sorry you have IC :kissing:
Young people getting IC seems to be becoming more common, unfortunately. I was also diagnosed with IC when I was 16 but was lucky enough to not have to go through all the waiting for a diagnoses like you did since I had severe IC symptoms like multiple ulcers and tears and all that gross stuff ;)
Hopefully now you can find some treatment that will help you get into remission!
Good luck and God bless :grouphug:

[Sarojini]

I'm really sorry they kept this from you -- it seems quite unfair to hide the truth from someone. I mean, it is your body, and you have the right to know what is going on with it and how you treat it, for better or worse.

I was lucky that I woke up enough before my diagnosing uro left the recovery room after my c/h to ask him if I had IC... I managed to try and sit up and say "Wait, do I have IC??" and he said, "Oh yes" and patted me on the head and told me to lie down and then told the nurse to give me some Dilaudid. He did also go out to see my husband before I woke up, and he knelt in front of Hubby and said, "What we have here is a very serious case of IC... basically, we have a girl who, when ANY urine at all touches that bladder she will need to pee." He mentioned the glomerulations and some scar tissue.

However, it was not until I switched uros and actually got my post-operative report that I found out I had two large Hunner's Ulcers... one on the top of my bladder and one on the left, slightly towards the back. So, some info was kept from me too! :(

[kadi]

Yeah, the post op nurse said that I did have IC, but my urologist told my mother in the waiting room that I probably did not because of my capacity under anesthesia. Then he continued to tell me I probably had a "transient irritation" for several months, even while marking "IC" on the insurance forms. Go figure.

His telling my mom I did not have IC probably contributed to the family problems I was having at the time because several members of my family did not want to believe how sick I was & were pretty harsh.

Frustrating & weird, because so many times I've gone to other doctors for minor things who insisted on running expensive tests to "rule out" horrible illnesses I turned out not to have, which of course was a relief after they scared the heck out of me. Then I do get something awful & several doctors don't want to tell me.

[mom_in_ma]

Green,
So sorry to hear that you have IC, but glad for you that you have finally received a diagnosis. Take care of yourself.

[SandyRN]

Honey I can NOT believe that they kept this from you. It seems illegal in a way doesn't it? I just cant believe they performed a procedure on you and didn't tell you the truthful results?!?!?!?!

At any rate, you finally got the diagnosis, but the stress it caused you wondering what was wrong with you is just not right :(

Can you talk to this other uro who did the procedure and flat out ask why they didnt tell you?

Let us know...hugs, Sandy

[tiffslprx]

I feel completely blessed after hearing all that. I haven't gone in for specific procedures to diagnose mine officially..the surgeries, but with the symptoms and other diagnoses that I have my ob/gyn and uro were confident in what I have. Even despite my age of 25. They didn't want to put me through another surgical procedure. I was put on Emliron and meds for pain..and minus the flare ups, I have been doing much better. I really believe mine was caught early, b/c I don't have near the number of problems that most have. I am definitely thankful for that, b/c I don't know how much more I could endure with endometriosis, migraines, and kidney issues. God works in mysterious ways and knows what we can handle.

I always remind myself... God will never give me anything I can't handle....but He is with me to help me too...

Good luck with your pain.
:angel:

[ICLori]

I'm so glad you finally have a diagnosis (I know it's a relief in itself to finally know what is wrong) but I'm mad that they withheld this information from you for so many months and left you wondering.

I hope that you find your miracle treatment soon (I'm convinced each of us has a miracle treatment, we just have to find it!) and feel better soon.

Blessings, Lori

[green_the_fish]

Thanks to everyone who replied here.
I appriciate the concern, but I don't want to take any legal action in this situation. I finally know the truth, and no one can ever take that knowledge away from me. Now that I have an official diagnosis, I just want to focus completely on treatment.
Unfortunetly, I've already tried most of the oral medications. I'm back on Elmiron, and I hope to try Atarax or an IC-specific antihistamine soon. After that, it will be instillations, and I'm not sure I want to go that route.
The one time I tried DMSO, they couldn't even install the solution because I was screaming in pain from the catheter. They had to take it out so I could stop crying. Perhaps this is because of all the irritation in my trigone, the lowest part of the bladder? Could this pain be being reffered to my urethra? Or, is it the mild case of Pelvic Floor Dysfunction that my IC has given me?

In any case, I'm really unsure about instills. I think when that time comes, I will most likely refuse them. Then, I would be down to alternative treatments, surgical implants, or long-term pain management. Wait, long-term pain management at my age? Other than a fresh supply of breakthrough meds, I really doubt anyone will want to prescribe the hardcore stuff daily to a 16-year-old. It would probably be the same for surgical implants. Oh, and I can't do clinical trials either, also because of my age. So, if treatments keep failing me, I think I'll just be screwed.

Anyway, I'm getting ahead of myself. Right now, my uro and I are negotiating another hydrodistention. I don't want to switch uros just yet, that would just be more stress on me and the bladder. I'm gonna at least try to work it out with this one. I'm gonna try to get him to do a cysto+hydro under my conditions.
Here's what I want:
-biopsy of trigone (the last hydro report said that my trigone had the most damage)
-biopsied tissue checked for mast cells (too many mast cells, that is)
-Percocet or a similar drug as soon as I wake up
-completely detubed when I wake up, no caths

I don't want to compromise. Hopefully, I won't have to argue to get my trigone biopsied. I don't care if it will make the procedure hurt more, I want to see if there are too many mast cells present so that I can better predict the efficency of antihistamines like Atarax, or even Alegra. My mother says that if the uro and I don't agree, I should find another uro to do the procedure. Makes sense to me.

The appointment is next week. In the meantime, I'm back on Elmiron, and taking the rest of my pills. Oh, well, that's the IC life.

[SrMaggie]

Fish, you have sure done your homework. It's good that at your age you can take on the responsibility of your treatment. I know when I was 16 I wouldn't have come off so confident. Good for you. I'm sure you'll find a way to make t hings better.
Some instills aren't so bad. When I learned how to cath myself, it wasn't nearly so bad. I was in control about how fast or slow it went it... I felt a was taking charge and could determine when I needed it and not have to go to the doc.s
You must be a very bright young woman.

[diane57]

You guys, this sort of freaks me out that doctors would withhold a diagnosis, tell us one thing but tell our relatives something else, etc. It gives me a queasy feeling that every time I visit a doctor now I might not be getting the whole picture. It does seem like it should be illegal for a doctor to withhold information like this from a patient!

Green, congratulations on FINALLY getting a diagnosis though. Did you ask the uro why the info was not given to you at the time? At the very least, he should have said, Well, the cysto is consistent with IC but I'm still hoping it's something transient, let's refer you to another doctor and get another opinion. But to completely not tell you you have IC, and make you wait 8 months to find out, is awful.

(GRITTING TEETH AND GROANING AND CURSING!!!!! - we need a little icon for that...)