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Help I have a Fistula Help I have a Fistula

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Unread 05-14-2002, 08:40 PM
Help I have a Fistula

I had my hysterectomy 3/28/02 and 2 days before I was to get my back to work slip, a splash of urine flew out of my vagina while i was sitting out on my deck enjoying the sunshine. I saw my surgeon the next day and she sent examined me and saw that urine was running down the vaginal wall but couldn't see the actual hole. She sent me to have dye put into my bladder and have that xray-ed to find the hole and both the stupid nurse (used wrong type of catheter, didn't empty my already fully loaded bladder and added a few cc's of dye which came back in her face) and this MORON radiologist who just stood 15 feet away and watched on his screen decided i was simply peeing my pants... sent me back to my surgeon, she asked me to return the next day (2 hour drive each way) and she did the test herself using methylene blue and tampax to determine if the urine was from the bladder (vs the possibility it was from a ureter) it indeed was from the bladder so she set me up an immediate appt with a urogynecologist at the University of Michigan Ann Arbor, 6 hour trip for us each way. I was relieved to at least see what could be done, but had to wait a week for the appt, and stayed in bed and cried the whole week. Tried a foley catheter but my bladder spent the time trying to push it out and spasming and me screaming and well that didn't go well so it was taken out. I have been wearing diapers for 8 days now. I went to the specialist appt and low and behold the nice radiologist report who said I was simply peeing my pants followed me, and the urogyne doc started talking to me like i was some idiot who didn't know the difference from one hole to the other and proceeded to tell me that most likely the reason the tampax turned blue was the "wick effect" from the urine running from the urethra and it got soaked "up" the tampax. i told him the radiologist was an IDIOT and that urine was RUNNING out of my vagina. he insisted that it wasn't that simple and said he was going to put blue dye in my bladder and look and see if it was coming out the urethra as it was possible i just couldn't hold my water anymore. I have never had to change a pair of underwear in my life because of a cough or a sneeze prior to this episode of suddenly urine running out but i guess what i had to say means nothing so i told him to go ahead. He had his nurse there busy assembling sterile gloves and mixing up blue dye, and getting a catheter ready, and the k-y jelly and all that rot... so HE could see that the radiologist was probably right and i'd had someone drive me all this way for nothing, i was ready to HIT him. He put me in the stirrups, took one look at me and turned to his nurse and told her to throw the dye she'd mixed up in the garbage, as it was obvious i had a huge fistula going from my bladder to my vagina. I'm still angry about how i wasn't taken seriously because of this radiologist and his report and his nurses stupidity. especially since i've been an RN for 17 years and there's no excuse for either one of them. The doctor apologized to me, (the urogynecologist) but i don't care, this complication so far has been devastating enough without the added humiliation that i've been put through so far. So here is the rest of the story as though it couldn't have gotten worse. He wants me to have a foley in for 2 weeks to see if it'll close on it's own. i can do that. if not. he wants me to wait 8 weeks for surgery, my employer won't extend my insurance coverage for any longer than 12 weeks. he said he wants to wait 8 weeks to do it vaginally so it'll be easier on me to recover, he said if he did it abdominally it'll be harder to recover (i know that, i've had 4 abdominal surgeries already) meaning i'll be off work a total of 21 weeks from the day i had my hysterectomy. I'll have no health insurance to cover the surgery, by then probably no job, be homeless for sure, as my disability only covers 60 percent of my income, I've tried to contact him to ask if he'd reconsider doing the surgery abdominally. I won't survive at all if i have to wait 8 weeks for the surgery and another 6 after that. I"m sure nobody here can help me with this, but I sure can't understand why this has to be so bad. I had awful periods for so many years before I had the hysterectomy, i was so looking forward to not having them anymore. I'd like them back, they were nothing compared to this mess of urine and woes.

Louise I.
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Unread 05-14-2002, 08:51 PM
Help I have a Fistula

Oh my goodness. What a terrible ordeal. I am so sorry that this has happened to you.

Can you apply for state INS? Here in Oregon we have a state health plan that one with no INS or lack of good INS can apply for....

I hope and pray all goes well for you and that things get better soon.

God Bless,
Unread 05-15-2002, 06:12 AM
Fistula...Been there, Done that...

's to you Louise.

I too have had a VVF (Vesicovaginal Fistula). My surgery (TAH/BSO) was 09/04/01. By the end of Sept, I had developed a Fistula and suffered wearing the Depends underwear AND Poise pads until Oct 26 when I had my first bladder repair surgery. Needless to say, it was a failed attempt so back I go in for a second repair on Dec 18. So, as you can see...I've had my fair share as well and I so wish you didn't have to go through this. I had a Foley Cath in for 8 weeks and 6 days, and yes, it was a miserable experience. I'm not telling you this to scare you, but from what I understand that it is better to wait a bit before making the attempt to repair it. My first repair was done laproscopically and the second one was done vaginally. So, I guess having it done vaginally was a better procedure.

It's so sad to hear how you were treated. Some people just don't have people manners or good people skills. ARGGGGGGHH!

As far as the insurance/income thingy...Been there, done that too. I had insurance for the Hyster, but none for either bladder surgery. And it's funny how the docs seem to have covered for each other. My hyster doc and first bladder repair doc are in the same office. And then the first bladder repair doc hooked me up with his urologist, and I didn't have to pay anything. HMMMMM?????? Not saying that it was any doc's fault as they say that this is UNCOMMON, but yet it seems so COMMON? I just don't get this, do you?

So, Louise if you ever want to talk or just "whine" feel free to email me at [email protected]. I'll be here for ya. Read my posts by doing a search of my name and you can see what to expect.

Take care and remember the HYSTERSISTERS love ya and care for ya.

Oh yeah....IT WILL GET BETTER!!! Trust me.

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Unread 05-15-2002, 07:18 AM
bladder wars, the saga continues

well i talked to Human resources today and my insurance runs out the end of june and the surgeon said he'd be willing to do the surgery in june. a spark of hope huh? i'm waiting to hear from him on a date. I go in an hour for the foley. I"m actually looking forward to it so i can have some COFFEE. The doctor gave me ditropan for the bladder spasms and every place i look for information it's only indicated for people who PEE THEIR PANTS. not that it's funny that that happens to women too, it just seems like i'll have this reputation forever. i'm going to get a tee shirt with it written on there.
I work with several psychiatrists who are my friends and i'm going to see one of them today, i'm within an inch of sanity. Thanks for your support. I bet it's good to have these things behind you. Even having the doctor say he'd do this in june, made it feel like i jumped a month ahead of the game. My kids and my boyfriend got together and bought me a swing for out on the deck, if it ever gets warm out around here i'm going to sit in in for hours with my little bag of pee and read. What did you wear for clothes? pants don't seem to be the plan. i have a few longer denim dresses, i might try those with knee socks, i thought sweat pants but i can't stand having anything up close to the catheter... i can see myself walking around with sweat pants hanging down around my knees, maybe i should get pants like my 22 year old son wears.. pockets hang down by his ankles and the rear end is hanging by his knees. really in style. *sigh* will this ever be funny? My family doesn't know what to do with me. For today i'm picking up my grandson until the foley is in, what's it going to hurt? he finally started coming up to me with his arms up and i couldn't pick him up for the last 7 weeks, i did it today, twice, i'm going to do it again once more before i go and get the catheter in, then lay low and hope the hole closes and not lift more than a coffee cup or the remote.

Unread 05-15-2002, 04:08 PM
Help I have a Fistula

I had a catheter for a short time (17 days).

Make sure you get a "bigger" bag for overnight, like the one they use in the hospital (it holds more urine and I found it more comfortable at night).

I wore shorts around the house and on occasion outside the house as well. I got some comfy lightweight exercise pants that worked well too.

Good luck.... I hope things get better.

Unread 05-15-2002, 04:34 PM
More from Me

I have the foley in, and i can't stand it. I hope this gets better, i've always been very sensitive to these things, seems other women tolerate them, i can't understand why i don't. I took pyridium, and the ditropan, and tylenol, and used the lidocaine jelly, just so i wasn't in tears, it took about an hour for all that to make me okay, and i'm only okay if i don't MOVE. maybe in a few days this will be okay. I"m not sure i can do this, but i will have to do this eventually after they fix this hole for 4 weeks or so. i'm usually pretty good with pain, even with the demerol after the surgery i was using so little they unhooked it so i'm figuring i'm not just being a baby, just don't tolerate catheters. meanwhile i have urine going into the catheter bag... (not much) and urine going into the attends (more than in the bag) and the weather got rotten so i didn't get to sit in my swing, and if it had been nice i don't think i could sit there anyways. I managed to sit here for a while and am still doing it as long as i don't MOVE ) I saw my psychiatrist friend who increased my antidepressant, which would take 2 weeks to change things, he meant well, but gave me a box of pecan toffee chocolates from Ethels chocolates in Las Vegas that he'd brought back for me for nurses day. I told him I'd let him know which worked better. I ate a few of them when I got home, and they were very good. My co-workers are donating a sick day each for me, which is nice of them. I guess they can all donate one, up to two weeks worth, and I was told by human resources I can borrow from my deferred comp account for medical emergencies to pay my Blue Cross and then they'll just increase what is put into it after i get back to work each pay day and payback would be relatively painless. Things are seeming better somewhat, but you wonder why things have to be so political when your health is a mess. A person doesn't need all this do they? My psychiatrist friend suggest I call blue cross because he thinks that the bladder complication is a continuation of the first surgery and blue cross should pay for that no matter if i still have coverage or not, my experience with blue cross is they lie cheat steal and rob their mothers to get out of paying anything so there is a slim chance of that, but i'll make the call just to see what kind of creative excuses they have. Does anybody have any experience with such a thing?

Unread 05-15-2002, 04:36 PM


Unread 05-15-2002, 05:52 PM

I just offer a and prayers for you.
Unread 05-15-2002, 08:42 PM
Help I have a Fistula

I'm sorry you are having so much trouble with the foley. I have no experience with them, so I can't help you there.

I do however have a suggestion about the INS stuff. Please find a referral center, resource center, patient advocate, or even a case worker to take on your cause. It does sound indeed like this is a symptom of surgery and that it should be covered on a continuing basis as care needed. I have found that there are folks out there to help and who will take on the horrible work of contacting, documenting, and advocating when needed.....

Also, have you checked to see if you would be elligible for a state or federal INS plan? I dont know what state you live in, but there may be options available to you that way too.

I pray all comes together for you soon,
Unread 05-20-2002, 04:37 PM
Sorry to hear you've had such a rough time!


Sorry to hear about your fistula. Boy, can I sympathize. I had my TAH on 2/21; surgery for knicked bladder on 2/25 (but they missed the fistula ); and finally, fistula repair on 4/10. My abdominal scars got bigger with each surgery and now forms a "T" My urologist joked that he should had turned it into a Toyota emblem

I returned to work 3 weeks after the 2nd surgery. Only 1 co-worker knows ALL the horrid details and said, "so last month when you were at work all the time, you had a CATHETER!?!?!" No one knew. I wore looser fitting pants or longer dresses. Today, my urologist gave me a CLEAN BILL OF HEALTH! He said I'm healed and shouldn't have any more problems (with the exception of my temporarily, small capacity bladder).

It's been a long road covered with pee, Depends, and foley catheters...but there is hope!!! I have my life back...and NO periods, too!

Good luck and I'll keep you in my prayers.


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