Be careful what doctor you let do this

[bellaluna05]

Hi my name is Lara, I am new to this board. I want to beg all of you to be very careful what doctor you let distend your bladder, during a cystoscopy. Even though it is a simple routine proceedure because of our delicate bladders, if the doctor does not specialize, really specialize in IC they can really hurt you perminately. Unfortunately I speak from experience. I have had IC for 12 years and I got diagnosed (from a cystoscopy) about 8 years ago, 8 years is also the amount of time that my IC has been very severe, end stage. This last year though I got even worse even though I didn't think that it was possible. I wasn't responding to ANY treatments and kept getting worse, so my doctor advised that I get another cystoscopy to rule out cancer and to see if I needed laser surgery. Unfortunately I have an HMO and none of the urologists in my medical group specialize in IC. So I went to a doctor that did and paid cash for a consultation, he agreed that I needed a cystoscopy done. Then I found out that he had to do this in the hospital under a local, and this would cost over $5,000. I did'nt have the money so I was forced to see a doctor in my medical group. I had my doctor call to explain to thi doctor not to distend my bladder too much because of my condition. When I saw this doctor I felt a little relieved because he claimed to specialize in IC after all. Well he did the cystoscopy as soon as I woke up I knew something was very wrong! He denied that anything was wrong with my bladder and even tried to tell me that I didn't have IC, even though he admitted to seeing some hemorageing. I was hospitalized due to the pain, but this doctor kept denying that anything was wrong with me. Yet I knew that he did something bad to my bladder. After a month they kept trying to discharge me without solving the problem. Luckily my boyfriend fought like hell and got me transfered to a better doctor at a different hospital. this doctor did emergency exploritory surgery and found that my bladder had been ruptured during the cystoscopy and because nothing was done about it for a month, half my bladder had already died, and I was almost dead as well. He removed the dead part of my bladder and replaced it with part of my intestine. Besides saving my life he was hopeing that this would help my IC. It didn't, my IC is worse than ever and now I can't even pee on my own, I have to catheterize myself everytime I have to pee, its hell. I am completely homebound and in so much pain. My new doctor told me that because of the severity of my condition I had only two options left, Interstim, or more sugery. I tried the Interstim and it made me worse. So now he says that my only choice is to have my bladder and urethra removed and to have a internal pouch made from my intestine that I would catheterize through a stoma in my lower pelvic area. I have had many second opinions and they all agree with this being my only option now. I am so scared and I wish I never had the damn cystoscopy, the idiot didn't even do a biopsy for cancer. So please know who you are trusting your bladder and your life with. I am not saying don't have a cystoscopy if you need one, just ask a lot of questions so you can be sure the doctor really knows what they are doing. This has completely ruined my life and cost me my bladder and urethra. I pray this never happenes to any of you. I just thought you should know the risks, no body ever told me that this could happen. I will keep you all in my prayers, if you have a second I could really use some too.
Lara

[tigger_gal]

hugs and prayers to you.

[ICNDonna]

I have had either 38 or 39 hydrodistentions and have been told prior to each and every one that a bladder tear is rare, but possible. For me the benefit far outweighs the remote possibility that this could occur.

I'm very sorry you have had such a horrible time and I will say a prayer that you feel better soon. Are you scheduled for the bladder removal? I know there are some who post regularly here who have had the surgery, most with good results.

Sending warm healing thoughts,
Donna

[Janie Miranda]

Lara,
I am so sorry that you are suffering like this. :grouphug:

[creatingkarma]

I'm really sorry to hear about what you have gone through. I've had 4 cystos & have never once been told that something like this could happen. I'm so sorry that this did happen to you & that you went so long with the doctor denying it. I'm wishing you the best.

[icjen]

Wow. I'm so sorry that happened to you. Sending you my prayers

[Briza]

Lara,
My heart goes out to you. I am sorry for the horrendous experience you had and what you are still going through. It breaks my heart. Although cysto and hydro seem to help many people who post here, and may be and important diagnostic procedure, it is true that very dangerous and life-threatening complications can and do occur as a result of this procedure. No matter how many people this procedure may help, and even if your doctor tells you about the risks, and even if complications are said to be rare, when it happens to you, it's not rare anymore, it's personal.

It is ironic that exactly one year ago today, I had this procedure done and now I see your post. You can read about my experience in this forum. The thread is titled Severe Pain after Hydro is Serious. Although my experience, thank God, was not as serious as yours, I do know that you must have suffered horrible, unrelenting pain as I did. I also awoke knowing that something was terribly wrong but was discharged from the hospital and things just continued to get worse and I am probably very luck that my bladder didn't rupture before I was hospitalized two days after the surgery.

Private message me if you need to talk or need support. I have lit a candle for you and you are in my prayers.

[hoping4acure]

I am so sorry you are going through this. Like ICNDonna, I have had great results from hydro's and believe that is what put me into remission.

Good luck...I will say a prayer for you


:grouphug:

[marsi4]

Hi Lara!

I'm one of those people that are reluctant to try invasive treatments. I have had 2 Hydro dystentions awake both times. I refuse to have one under anaesthesia fearing the worst, unfortunately what happened to you. Many Doctors know very little about this disease but act as though they're all experts. I've dealt with rude doctors who criticize me and insult me for not having done or tried all the treatments and tests they want to put me through. I'm extremely cautious about anything I get done, fearing the possible reprocautions and mishaps that can occur. I.'m tired of Doctors whon downplay the severity of this illness, and accidents that may occur as a result of procedures, and when something does occur they don't even take responsibility. I'm so sorry for what has happened to you. My heart aches as I sit here typing in pain. I would pursue the doctor that did the hydro-dyst. even though you can't get your bladder back, but at least get some compensation for your loss of an organ, and have his license revoked so somebody else won't go through that as well. I pray that you get the best uro-surgeon to do your surgery because the last thing you need are more complications, pain, and suffering. My thoughts are with you and please keep posting and let us know how you are doing after your surgery. Thank you so much for informing and warning others of the possible disasters that can occur with this procedure.

Marsi4

[patricia1]

Lara I am so so sorry this happened to you. I have had to cysto's done, neither helped with my IC though. The first one was for diagnose of IC and the second was with my new uro to see if it might would help. I knew that bladder tears or ruptures were possible with this procedure. Although it does not happen alot, I dont believe.

I hope that in the future you can get better. And thanks for telling your story. We all need to know the pro's and cons with all these different procedure.... :grouphug:

[Annie2]

Hi, Lara. I cannot find words adequate to describe the sorrow I feel for all that has happened to you. Thank you so much for coming here and sharing your story. It is something I think we all needed to hear. I do hope you will continue to communicate with all of us here. Though we are only a "cyber community", the support and concern for your well-being we offer to you is very real and heartfelt, as are the many prayers we will be offering for you.

Your story has given all of us a big wake-up call. It is so very important for all of us, newbies and experienced ICers alike, to continue to educate ourselves about ALL aspects of this disease, possible treatments and medications used. Because there are so few medical professionals who are experts in this specialty and because insurance today dictates much concerning the source and quality of the care we can receive, it is imperative we all continue to learn all we possibly can so that we may advocate for the best for ourselves. Learning about research advances and new possible treatments is important and gives us hope the future will bring even better treatment. But we must also learn about the negatives...all the things that CAN happen. Only when we do this can we make the kind of informed decisions having IC demands of us. So I thank you for sharing your story. It is important for all of us to hear.

There is a reason more and more physicians are using the PST or symptoms plus tests to rule out other causes rather than the cysto/hydro to diagnose IC. Yes, hydrodistention is a viable treatment option for many patients and there are quite a few patients who do well with repeated distentions as their primary treatment. But there are risks, big risks, with hydrodistention. When I was undergoing DX, I insisted the least invasive tests be used. I was pleased to find a uro who has a healthy respect for hydrodistention. My uro prefers the newer method of diagnosis. He uses all the standard tests to rule out other causes along with the PST to diagnose IC and prefers to save the cysto/hydro as a treatment option to be tried if less invasive meds and treatments fail to bring relief.

It is up to each one of us to decide what is the best for our individual situation. Educating ourselves is the best thing we can do to help us make these decisions.

Many hugs to you, Lara. :grouphug: :grouphug: :grouphug: Please keep us updated as to how you are doing. We all really do care and are here for you whenever you need us.

[Romans8:28]

Lara I too am soo sorry for all you have suffered! :grouphug:

[JaniceB]

How horrible. I am so sorry. I was also not informed this could happen. I never knew that type of thing was a risk, until I read someone's post here a few weeks ago.

Janice

[bellaluna05]

thank you all so much for your prayers!! I will gladly return the favor! I also just want to let all of you know that I was in no way trying to discourage anyone from having a cystoscopy done, but rather just be really careful what doctor you have do it. it is a very important proceedure to have done for IC patients, it can really aid in what treatment options you should follow and for some of you the proceedure itself really seems to help. It is just that if I had known that this was a risk I would have been much more careful in choosing a doctor, I would have fought my insurance to cover someone else. See I wasn't having it done to be diagnosed or as a treatment for my IC, I simply wanted to be tested for cancer, so I didn't think it was a problem that the doctor in my medical group wasn't an expert in IC. I wasn't going to go to him for treatment afterall. I just needed this "simple" proceedure done so I could better continue treatment with the natural med. doctor i was already seeing. Had I known that this idiot didn't know how to properly distend an IC bladder, or the risks involved with this proceedure. I would have found the money to go to an expert. I just don't want anyone else to make the same mistake I did. Don't let your insurance bully you into seeing a doctor that is much less qualified in IC, just because they don't wan't to pay a doctor out of network. Everyday I think how if I just would have gone to the other doctor, if I would have fought my insurance to cover him or just somehow found the money to pay cash, I wouldn't be going through this. I would still be peeing on my own and trying all the new treatments for IC, waiting for a cure just like the rest of you, suffering but still with some hope of a cure someday. but now because of my damaged augmented bladder I am no longer eliglable for any new or exsisting treatments, I have to say goodbye to my bladder and urethra all together forever and IC will always be in my body, hopefully I just won't feel it with this surgery, but i don't know.
It just kills me that this damn doctor and other doctors could be ruining someone else's life that definitly doesn't need anymore problems. Thank you for letting me vent once again. You are all in my heart and I just beg you all to be careful!
Lara

[Dianne]

Bellaluna, did the Dr. puncture your bladder with a cystoscope as opposed to overstretching it with a hydro to the point of a rupture? I think this happened during a cysto, right?

[bellaluna05]

Diane,
your right it did happen during a cystoscopy, and I think it was caused by him over distending my bladder I am pretty sure that is what it said in my medical records from my new doctor. :( It haunts me every day. Even though there is no record of this ever happening to anyone else (to this extent, bladders have been punctured, but fixed) I am so worried about all of you and all new patients who have to have a cystoscopy with hydrodistention, I don't want this to happen to anyone else ever! I wish I could warn everyone, but I can't yet, it's killing me. Please to all of you just make sure you really trust your doctor! I have been crying about this all night. I hate this.
Lara