Wrong diagnoses

[jrowley]

Well guys and gals I would suggest anyone that is having difficulty with their uros to go to another one. My first one said I had IC and started me on elmiron and ditropan xl, so for seven months I took it. Well on my last (third) visit with him I was telling him about the pain I was having and he spent 15mins pacing the floor and scratching his head till he finally said I don't know what to do for you and prescribed darvecots. Well I decided to seek another opinion. Dr. Wang, I went to him and he wanted to do another scope of my bladder and see for himself what was going on. Well I had that scope on Friday and turns out that for the past seven months I have been taking meds that were not necessary. He said that he didn't see any lesions in my bladder and that it looked fine that all the pain and pressure was caused from a tilted uterus that I have had for 15 years. It's laying on my bladder causing the pain. Well when all this started I had went to a gyno first he did a ultra sound and a ct scan and didn't say anything about the uterus and sent me off to the uro. He did a scope and didn't see that my uterus was laying on it causing the pressure either and just gave me meds and said couldn't help you anymore. Makes me just sick that doctors can do such things as this. Takes three doctors lots of unnecessary meds and a series of test to get the right diagnoses. Well anyway I am so thankfull that I don't have IC. Now off to a new gyno to get the uterus taken care of. Hopefully they will take it out instead of trying to tie it up as I don't want to go through that three times where then they finally decide that tieing it won't help.

Then I also have my restless leg syndrome to get straightened out but I have a neuro app on the 5th of may so hopefully she will discover whats wrong there so I don't have to go through a bunch of doctors to get it right.

Good luck girls and guys with your IC if you need to talk your welcome to email me or pm me on yahoo. And don't forget if you have that feeling that what they are telling is not right be presistant and seek the right answers they don't all tell you the right thing most just give you meds just to keep you quite. ;)

[ICNDonna]

When I had a cystoscopy before I was diagnosed, my bladder looked entirely normal and healthy. It was not until it was distended under anesthesia that the IC became apparent and the Hunners ulcers visible.

Donna

[jrowley]

They did that friday and the first time both. Friday he also stretched my bladder much farther than the first uro and still did not see any lesions. So it's pretty much affirmative that i don't have it. It also explains why I can eat and drink anything I want to and I have no problems with pain when I do unlike a lot of others that have IC. I have had a issue with my uterus for 15 years however, have complained several times about the horrible low back pain i wake up to however it would go away after being up for a couple of hours. Which titled uterus's will cause this kind of pain. I knew I had the uterus problem to begin with that was why I seeked out a gyno back in october except this time he overlooked my uterus and sent me to a uro. So I am really really glad that i sought out another opinion, which I encourage everyone to do that has been having difficulties with their uro's.

[mayray518]

The first doc who looked at my bladder said I didnt have IC. this was about 2 months after symptoms started. The next one who did a hydro and distention about 8 months later saw the petechial hemorrhages. I hope you dont have IC but dont listen to the first diagnosis if you still have symptoms.

[jrowley]

I didn't listen to the first one that why I went to a second doctor. I not only had a uro diagnose me wrong but the gyno that I went to also thought I had ic after doing a ultra sound and ct scan that was why he sent me to the first uro who agreed with him so I took it on myself to seek another opinion and the second uro says no its your uterus which I thought was my problem all along. Oh and by the way I haven't had any symptoms except for occasional pain which is mostly around my periods. That was another reason why I sought another opinion cuz things didn't add up right. But anyway I it doesnt matter I thought this was a board of congrats. All I know is I am happy that I don't have it and I want to let everyone know that if their gut is telling something totally different then to go with that feeling and seek second opinions. Cuz I don't know about you but I don't appreciate paying for meds for 7 months when I didn't need them. For me that was 60.00 a month copay so I wasted 500.00 on meds that I didn't need.

[Portia17]

jrowley

You know, thank God you found someone that finally diagnosed you correctly.

My uro could not find nothing wrong with my bladder with the cysto hydro stretch. He found it with a BIOPSY so I don't know

I am glad you dont have it

[jrowley]

I had that done too portia Friday

Thank you

[Portia17]

J ROWLEY

You go girl. I am so happy for you. I mean not about the tilted thing but that can be taken care of whereas ic. cant


I am happy for u

[jrowley]

Yeah I know thats why I am so happy too smooth sailing now. Thanks so much

[Imustpee]

Not all ICers have pain..I don't..And I have a tipped uterus...

[kelly McC]

I do have pain and a tilted uterus along with IC.Glad you found out whats going on with
Kelly

[tigger_gal]

I am glad you don't have IC also.. I am surprised that he dx'ed you wrong even with having a hydro done... I only thought the biopsy was just to check for cancer?? I was unaware that a biopsy can determine IC.....
anywho I am glad that you are IC free :woohoo:
Brat

[jrowley]

Yeah brat thats what I thought about a biopsy too so they can see if you have cancer or not. The only thing I have heard of to determine IC is under the scope and whether or not you have lesions. And I'm not surprised about the first uro's dx's as he always seemed kind of goofy. He never really did actually say I had IC he just treated me for it.

[jrowley]

Not all ICers have pain..I don't..And I have a tipped uterus...

Imustpee, That is why I seeked out another opinion as I never really thought that I had IC and my uterus has given me such pain in my back for so long. However it took three doctors and two hydro's, a ct scan, ultra sound and numerous urine and blood test for them to find that the only problem I have is the uterus.

I also would like to say that I hope everyone one with IC has theirs under control or can get it under control as I wouldn't wish that on my worst emenemy. To me having IC was worst than having cancer, at least with cancer you have a 50/50 hope of it going away and with IC once there it there forever. The dreded thought of pills for the rest of your life in hopes that you dont develop worst pain just about drove me nuts. Anyways. good luck to all pain is horrible especially pain in areas we have no control over. :grouphug:

[dancemomof2]

Glad you found the answers you were looking for nothing wrong with being happy with a second opion. Hope to keep hearing from you though to see how your doing.

[southerngirl]

I'm very happy for you if you don't have IC! That would be a great thing to find out. I also have a tipped uterus, but I was told that wouldn't be causing the pain that I was having. I also know what it's like to go from doc to doc, I went to about 4 before finding out I had IC and went to several more trying to find a doctor who could help me with the pain. One of the first docs, did a scope in his office and he even put in fluid to stretch my bladder and he told me that nothing was wrong with my bladder. Finally I had another doctor who put me under with anesthesia (I know that is totally spelled wrong!) and did a cystoscopy with hydrodistention and found IC lesions and hunner's ulcers. I tried elmiron and it did nothing for me. Now I'm on neurontin, hydrocodone, and I have a tens unit and lidocane patches.
But the thing is to trust your gut! Early on when the doctors couldn't find anything wrong, I started researching on the internet and learned of IC. After reading about it, I knew that was what I had, and I worked until I found a doctor who would listen to me and try to help me. So, I commend you for not giving up, especially if you thought the doctor was wrong. I hope everything works out for you concerning your tipped uterus. I'll pray for you. Feel free to PM me on here if you need to. Good luck to you!

[Portia17]

So what are you trying to say that I HAVE CANCER because mine was diagnosed from a biopsy. My doctor did not say that to me. From the biopsy he said I have inflammation and cells of i.c.

I DO NOT LIKE BEING MADE SCARED

[jaime15]

Jrowley- I'm so glad you finally got to the bottom of your mystery. It sure was a long road for you and even though time and money is wasted........you don't have an incurable disease! ;) YAY! Take care.......... :grouphug:

Portia- No one on here will dispute what your physician has done in your medical case. Nor should they. If someone scared you, I'm sure it was unintentional. I know I don't know everything there is about IC. If a certain procedure wasn't performed on me, then I don't know it's available or what it entails.
If you are concerned, please give your uro's office a call........that's what they are there for.......the answers you need. :) .......take care..... :grouphug:

[dancemomof2]

Portia, first off calm down!!! No one tried to scare you just tried to emphasis that trust your gut feeling about anything you may feel uneasy with that your DR tells you. This post had nothing to do with you, but about a success story from one of our members, who trusts her dr opion. Please don't take everything you read here to heart, and believe that what others are talking about relates to you. If we all did this we would be digging our grave from worrying about the "what if's" Sometimes it is better to read and not respond to topics that frustrate you.

[tigger_gal]

So what are you trying to say that I HAVE CANCER because mine was diagnosed from a biopsy. My doctor did not say that to me. From the biopsy he said I have inflammation and cells of i.c.

I DO NOT LIKE BEING MADE SCARED


My intentions were not to scare you, or any one... I just asked a simple question about the biopsy??? I don't know why you took this so personal. It's no different then asking what any other test was..
Brat

[Portia17]

well that is all I have been reading that biopsy only shows cancer. okay and now I called my nurse wondering if it is true.

[dancemomof2]

Yes they are usuallly done to check "AS A PRECAUTION ONLY" It is better to take it then to wish they had later. It is standard procedure with some DR to do this, not all physicians treat everyone the same way. I am sure you have read that in alot of post how we are treated with different meds, treatments, and all DR have there own theory on IC as well. I really think this is being blown way out of proportian. I only read questions being ask not diagnosis' being given to anyone. Like I said before some posts are better to read then to respond to.

[tigger_gal]

it would be against the law for a doctor not to tell you you have cancer..... Not to mention he would lose his medical license. I assure you if you had cancer you would know.. No one is trying to tell you, you have cancer..
Brat

[jrowley]

jrowley

You know, thank God you found someone that finally diagnosed you correctly.

My uro could not find nothing wrong with my bladder with the cysto hydro stretch. He found it with a BIOPSY so I don't know

I am glad you dont have it

Leslie very well put on your explainations. And thank you for your support and encouragement.

Mary, in no way would I or anyone else say you have cancer as we are not doctors but as I highlighted in red you mentioned that your doctor found your IC through a biopsy in which most of here are under the impression from all the medical research we have done, that a biopsy is simply a precedure to rule out having cancer and that the main procedure in finding IC, which is very difficult to dx is through a hydro/cysto where lesions and hunners ulcers show and are sure signs of IC. I'm am very sorry if I or anyone else has scared you with our remarks. I do agree with Leslie that calling your doc and having him explain his procedures to you and why they were done will clear any scared feelings your having about cancer. I have had two hydro/cysto's since october and both they did a biopsy to simply rule out the possibility of cancer. :grouphug: to you and again sorry for the confusion.

Jan

What is a Biopsy?
A biopsy is a microscopic examination of tissue. A bladder biopsy is performed with a long tweezer-like instrument which is attached to the cystoscope. Small samples of tissues are removed from different locations of the bladder wall and the urethra.
Biopsy is always done after hydrodistention, The biopsy has no pathognomonic findings for IC, (biopsies can not determine IC) they are done to rule out other varieties of cystitis or conditions, i.e., malignant or premalignant diseases.

http://www.ic-network.com/handbook/testpro.html#Biopsy

[Annie2]

This same cancer scare came up in another thread, too. I tried to explain my interpretation of the misunderstanding there but will repeat a little of that here.

Some doctors believe that large-scale growth of mast cells within a patient's bladder (indicating an allergic reaction is going on) is an indication of IC in that patient. When a biopsy is performed, it does check for the presence of cancer. When a cysto/hydro is performed and a biopsy is performed at the same time, the doctor can have the lab check that biopsy sample for just cancer or can, in addition to the biopsy, have the sample checked for mast cell proliferation. Some doctors just order the biopsy (check for cancer cells) but some do check for both. I think the confusion here is that in Mary's (Portia's) case, her doctor may have checked for both. I am NOT a doctor and am only making a guess here. My GUESS is that, though the biopsy showed no cancer, mast cell growth was found. And though her doctor found no signs of IC during the hydrodistention, it was because of the finding of mast cell growth in the biopsy sample that her doctor diagnosed her with IC. It was the test done along with the biopsy that led to her DX.

As I said before, this is just my guess as to the misunderstanding here. To be sure, Mary really should talk with her doctor and have him explain all of this to her.

Annie

[jrowley]

Very true annie Thanks. I read the other thread also. Problem is that this thread was intended for my new dx'os and not to scare anyone on biopsies. And the intention was to remind ppl that if their gut tells them one thing and they are not sure of a dx'os from a doctor then they should seek out another opinion. Somehow it got turned around to someone elses biopsy lol. Guess thats the way the world turns. I guess sometimes when your looking for support you can't always get it when there are ppl in the world that think their problems are more important or severe.

[Portia17]

I read your posts and I will clarify it again.,

He said they hydro cysto was no showing anything so the biopsy showed the inflammation and the cells of i.c. I do not have to speak to my doctor because this is what he has told me 2x.

[jrowley]

Portia I dont think its nessecary for you get like this especially when this was my thread and my good news now the post has turned around to your doctor and a debate on what he told you. Well fine all we said was that normally a biopsy is to rule out other diseases like cancer and you took it farther than that. Enough is enough sorry that you got scared but this is suppose to be my happy time so leave it at that for just one day.

And once again:
A biopsy is a microscopic examination of tissue. A bladder biopsy is performed with a long tweezer-like instrument which is attached to the cystoscope. Small samples of tissues are removed from different locations of the bladder wall and the urethra.
Biopsy is always done after hydrodistention, The biopsy has no pathognomonic findings for IC, (biopsies can not determine IC) they are done to rule out other varieties of cystitis or conditions, i.e., malignant (cancer) or premalignant diseases.

[tigger_gal]

my orginal post
I am glad you don't have IC also.. I am surprised that he dx'ed you wrong even with having a hydro done... I only thought the biopsy was just to check for cancer?? I was unaware that a biopsy can determine IC.....
anywho I am glad that you are IC free :woohoo:
Brat


Jan,
I am truley sorry for asking this question and being totaly responsible for your post get all turned around.. :bow: please forgive me. I never in a million years would have thought that my question would get twisted..
I am glad you don't have IC.... I am glad you had a gut feeling and seeked a second opinion..
This post was supposed to be about you and I stepped in and screwed it up.. again I am sorry... :kissing:
Hugs
Brat

[Annie2]

Jan,

This is your thread and it still is a happy one for you. :) I am so glad you have found you do not have IC. That news is absolutely wonderful! :dance: You have many friends here at the ICN and I am sure we all wish you well! Hope that you will continue to visit with those of us here and keep us posted on how you are doing! You certainly have a tremendous understanding of IC and I hope you will continue to help us get the word out about this little known disease!

So happy for you!!!

Annie

[Jeanne D.]

Jan.

I am also very happy to hear that you don't have IC. What a relief that must be! Best of luck to you. Hopefully your problems will be resolved once the problem with your uterus is taken care of.

Now a word about biopsy. A biopsy is "a term used to describe the removal of a small piece of tissue from a living body for histologic examination needed to establish an accurate diagnosis." Biopsies are generally done to determine if the tissue is infiltrated with cancerous or non-cancerous cells. If cancer cells are seen the biopsy is classified malignant. If no cancer cells are seen the biopsy is classified benign. Sometimes cells may undergo changes -- terms used to describe these changes may be labeled pre-cancerous, hyperplasia, or dysplasia. These changes are not cancerous but must be watched as they may turn cancerous. A biospy is not only done to diagnose cancer. In my case, the bladder tissue removed from my bladder during biopsy showed an extremely large infiltration of eosinophils.This was how it was determined that I had EC and not IC.

I hope the above explanation of biospy was able to put everyone's mind at ease. Wishing happy, healthy, and pain free days to all.

Jeanne

[dancemomof2]

The boards wouldn't be the same without Jan, I hope she doesn't get offended herself and not come back and keep in touch with us all. It is shame how 1 simple comment festers to a complete nightmare and ruin such a wonderful thread one we all would love to be the one to post. email me anytime jan rstasny@cebridge.net

[jrowley]

Thank you all and I am not going anywhere for the past 7 months I have posted and had replies from all of you and I enjoy and encourage all positive post. There is a time for support and a time to recieve support something that all with such a horrible disease understands. One thing I have learned that there are ppl that are a whole lot worse than me and this board has taught me to not be a tear in my own selfishness but to come strong from my pains and give to the ones that need to learn how to become strong and to give all that i can even if it is a link to a med to explain its properties or side effects to just a im sorry or hope all goes well or I am so happy that you feel better. Im not going at all this has been a source of knowledge and healing for me and I think you are all wonderful.

Thank you all for everything.

[andcohen]

Hey that is great news!!! :woohoo: I too hope that you get everything under control & have a happy & pain free life. I think you are wise to get another opion. You can now treat the problem at hand & hopefully get great results.
Take Care
Andrea

[melanie626]

Jan,
Glad to hear you are doing well and they figured it out . Only a nsmall percentage of IC patients have hunners ulcers and many people can have normal hydro's under anesthesia- but they tend to have smaller volumes and they may or may not have the peticial hemmorages...it is still a diagnosis of exclusion ( can you tell I just finished the IC survival Guide book by that famous IC MD)? I hope all goes well for you..