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Fistula Repair Surgery Failure Fistula Repair Surgery Failure

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Unread 03-04-2003, 08:06 AM
Fistula Repair Surgery Failure

I am looking for answers from someone that has had the fistula surgery without success. I am 25 days post op from my second fistula repair surgery. Major pain, continual bladder spasms & much leakage. I have a supra cathater in that is giving me constant problems. My next appt with uro is Monday but am not incouraged. He says he will probably remove the left stint but leave in the right because it is close to fistula & possibly start bladder training on me. Last appt uro said he does not know what else he can do if this is a failure. I don't bother calling him or try to see him again because he ignores my calls & visits now. His office is an hour away & my husband rushed me there while I was in extreme pain only to be sent home by nurse with yes it is painful & to learn to deal with it. She also said the dr said I can return to work whenever I like. Unbelievable since I have a hard time bathing & walking from one end of my house to the other. I also have been having panic attacks & am so clostro phobic that seeing someone in a closed spot hyperventilates me. Lately I have had a strong unpleasant oder & dark colored urine mixed with blood. Very, very depressed & terrible uncontrollable fits of temper. I am looking for someone with similar experience that could give me any advice. Can't bring myself to go through anymore surgery or anymore IVP's Cystograms. Can a person learn to manage pain & leaking. I leak so much that diapers leak before I get to bathroom to change them. I get some relief if I sit on toliet & let it run out. I think I am 50%cath & diaper. Please give me someone reason to look forward. Even weather won't cooperate. Confined to my house due to pain. Looked in the mirror yesterday & noticed I look more like 80 years old then only 45. I am turning on my husband that has been great to me through all of this. He is at a loss & says he will support me in whatever I decide to do. I just wish I knew what that was. I don't trust anything dr tell me anymore. I just would like a pain free day. I dread the day they take my pain pills away. Insurance company is already balking about the amount I take which doesn't make any difference as the type I take are inexpensive. Even though I would love the advice, deep in my heart I hope that noone else is in my shoes. I know that there are people worse off then me but at this point I am not able to think about anything but the pain I am experiencing.
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Unread 03-04-2003, 09:52 AM
Fistula Repair Surgery Failure

(((((Terry))))) I am so sorry you are going through so much. I wish I had some answers, but I'm at a loss... since I haven't been through the surgery myself. I can tell you I understand what it feels like to have to be having problems long after you thought your life would be all back to normal, and that you are in very good company here. I wish I could give you some very big in person!

Unread 03-04-2003, 10:24 AM
Fistula Repair Surgery Failure

HI Terry

- I really can't give you any medical advice, but I to have a fistula and am scheduled for surgery- but I can't imagine how you feel.

The only thought I have is to as to Dr- I found my own at a very large Univ/hospital that are connected. They do these all the time so are experienced. Don't know if that might be an option. You can do checking on the phone and the one who helped me the most was the secretary as she knew who came and went and for what.

I hope you can get some relief for the pain and I am sending warm thoughts your way! Take care and try to relax as much as you can.

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Unread 03-04-2003, 10:54 AM
Fistula Repair Surgery Failure

((((Terry))))) I'm so very sorry you've been going through all of this I have no insight to offer, since I'm not dealing with these issues myself. However, I did want to send some s your way.

I tend to agree with Karen that it might be time to seek another doctor's opinion. Like you, I can't imagine having to live with this kind of pain and leaking, without a possibility of relief and resolution. I can empathise, somewhat, since I'm myself dealing with an increasing problem with incontinence.

I do hope that your next visit to your urologist brings a bit of insight. I bet that a at the end of the tunnel would be a nice incentive for you.

Sending tons of s your way.
Unread 03-04-2003, 11:24 AM
Fistula Repair Surgery Failure

(((Terry))), have you run across this article before?:

It is a report of a surgery which was done on a patient with a complex fistula after the vaginal repair surgery had failed. I know it's not the same as hearing from a live woman who has been through it, but maybe it will give you some information that might help you in planning what to do next.

Please don't give up sweetie I remember when you first came here you were able to be so optimistic... and you told us how the DRs had told you you were so lucky to be alive after your hyst surgery. You have been through a lot! You are a strong lady and you will get through this, too. It is a matter of hooking up with a DR who has experience in repairs that are more complicated such as yours and the one in the above article. You might have to travel. You wouldn't be the first lady in this forum who's had to go far away from home to get the best possible person to do her surgery when conventional procedures hadn't worked.

I know it's hard when you don't live in a major metropolitan area, but I really agree with the other ladies, you are probably going to have to bite the bullet on this one and search far and wide for someone who can help you. The DR you are seeing now is already becoming negative and uncommunicative... those are not traits we want in our DRs! Please try to get another opinion. Would your DH help you in the search?

Also how is your HRT doing? I remember you were on Climara back a ways... are you still using that, and is it doing the job for you? Have you even been able to think about that in the face of all the fistula issues? The right HRT can go a long way towards helping you stay positive about what you're having to go through.

I encourage you to visit our Aching Hearts forum, too... there are some wonderful, understanding ladies there whose support can really help when things are looking bleak.

I have to believe there is a DR out there who has the skills to repair even your fistula. I'm keeping my fingers crossed that you can find him or her and get back on the road to drier days!

Unread 03-04-2003, 01:04 PM
Fistula Repair Surgery Failure

I'm sorry to hear that you're not doing much better. While I can't relate to the fistula issue I can relate to the pain issues. It is hard being in pain 24/7, especially when it looks like it will never end. Please don't give up hope sweetie.

You do have friends here who care. I'm sending s and I will keep you in my ers.
Unread 03-04-2003, 02:29 PM
Fistula Repair Surgery Failure

I appreciate all the advice & the well wishes. I am looking for someone with advice on pain control & how to live with constant leaking. My dr's are very highly recommended logging over 1000's of similiar surgeries all successful. I am their 1st failure & they have already referred me to their mentor. Although most of their fistulas are due to radiation therapy they are constantly cleaning up after one particular gyn. They are from KU Med Center (Kansas University Medical Center, Kansas City MO.) My gyn was head of an ER unit at a major New York Hospital. He holds license in NY, Indiana, Florida & Kansas & has saved numerous lives. I do intend to travel to wherever this world reknowned uro is located when I feel good enough to travel. I do not intend to have anymore prodding, poking & surgeries though so I guess I am in so hurry. This morning I was reading about relaxation breathing. I will not do acupunture as needles & I do not get along. I was hoping someone could recommend holisitc healing (not sure if the spelling is correct) or something of this nature. Maybe someone has been to a pain clinic & learned something new that might help. I want to have my supra & stints removed & start living again. In the beginning I did feel lucky to be alive but this is not living. It has gone on too long & my dr's are as frustrated as I am & obviously not very sympathetic regarding my pain issues.
Unread 03-04-2003, 02:33 PM
Fistula Repair Surgery Failure

I forgot. I do have the Climara patch & my gyn upped the dosage. My husband never lets me forget when it is Tuesday & always changes it for me. That is probably why I am begging for help today because he is bugging me to change it right now.
Unread 03-05-2003, 12:31 AM
Fistula Repair Surgery Failure

((((Redapple)))). sorry to hear that you are having such problems. I too have a fistula, and waiting to find out the what and where of it, I can relate to the leaking and pain. . We are all here for you sisters. You are in my thoughts.

Peace and light,

Unread 03-05-2003, 06:54 PM
Fistula Repair Surgery Failure

(((((Terry))))) Sweetie, please be assured that I never meant to imply that your doctors were not knowledgeable or experienced with fistula patients, I just wanted to suggest the possibility of another opinion since it might have brought an end to your problems. However, of course, I can understand your reluctance towards yet even more prodding and cutting

(((((Sweetie)))) There are, unfortunately, many members who are dealing with different forms of chronic pain. Some have found success with going through pain clinics. Here are links to pain management resources:
Pain Management

Chronic Pain & getting relief:

Chronic Pain Medicines:
CPP~Symptom checklist:
Monthly Pain Calendar:
Pain questionaire:

Pain Mgmt Drs & Clinics
This one is on Nerve Pain:

Addiction vs.Dependance:

Pain: The Controversy Surrounding Chronic Pain and Opioids:

FMS Fact Sheet:

Nerve damage after surgery:

Pain and the Law:


Where the constant leaking is concerned, as one who suffers from incontinence, I can say that I haven't come to terms with it yes: I'm hoping that I can find an answer and solution to that problem. At 46, I simply can't see myself having to contend with Poise pads, or even graduating to diapers, for the rest of my life. However, there might be someone who'll come along with some hints on how to cope with this problem.

((((Terry))))) You've been through soooooo much, it's little wonder that you are not looking for some way to come to terms with the issue and to put the matter to rest.

By the way, here are some links to Fistula resources, including support communities. You might find some insight from these groups:

Fistula articles, support groups, and resources:

I really hope that you find the answers you're looking for.


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