Need help from fistula sisters!!!

I am in desperate need of advice from those of you who have had fistulas and other bladder matters. I suspect that I may have a serious bladder problem and need advice. I apologize in advance for the long explanation--I'm an English teacher and have to use lots of details! Here's my history:

TAH/BSO on 11/17/06--I had a small section (1 cm) of bladder removed because the scarring and adhesions were like cutting through boot leather and was totally adhered to the cervix.

I was able to urinate at the hospital and for 4 days at home. Suddenly, I couldn't void at all for two days. I went the the hospital where they inserted a catheter and surgeon said that my sutures in the bladder had blown and that my abdomin was full of urine. I asked for a scope or dye test, but the dr. said it wasn't necessary.

I went home after two days and had a foley catheter in for a total of 7 days. I took the catheter out following surgeon's instructions with no problems. I urinated successfully, although I had no sensation of having to go for one day.(I just sat on the toilet every couple of hours and it would stream out.)

Since then, I still have no sensation of needing to urinate and I am leaking constantly. At least twice a day, I "flood" myself and my clothing. I am using between 12-15 ultra serenity pads a day. This has been going on for 14 days now. My surgeon said that my bladder was traumatized by the surgery and cath and it would heal on its own. I consulted a urologist who said basically the same thing, but found a UTI and said my bladder was overactive. He prescribed Embelex for the overactive bladder and antibiotics for the UTI.

I had a follow up with my gynocologist and he is not convinced that either of the others are right since there were no definitive tests done and I'm still flowing like a river after two weeks. He's giving me one more week and then sending me to a bladder specialist in Tulsa. If anything, I'm worse now than when the leaking started. I am frustrated!!!

I need to know what the symptoms are for fistulas or advice from anyone with similar experiences. When I urinate, I have no sensation, but I seem to have two major liquid pools on my pad--one in the front, and one in the middle. Also, I have urine near or on my rectum every time I go. Is that normal with incontinence? Please help! Any information and advice will be greatly appreciated.

Shannon

Shannon, I'm so sorry you are having such awful problems.

I do hope one or more of the "Fistula Sisters" will come on here soon and see your post. There are tests that your urologist should be able to suggest to you to let you know if you have one or not. I do know that several people have gone to see a urogynecologists as opposed to either urologists or gynecologists. Perhaps that could be an option if your urologist doesn't/can't/won't help you?

Sending many +++ thoughts to you.....

I just had fistula repair surgery and am hoping it worked! This is such a frustrating problem-I'm sorry you're having to go through this. My problems started about 3 weeks after my TAH, my panties were damp and I would feel this "bubble" near my urethra, and then a feeling of moisture. My gyn had me take AZO Standard (OTC) to turn the urine orange, and then carefully put in a tampon, and leave it in as long as I could (but take out prior to urinating) If the tampon was stained orange, that indicated a fistula. My gyn had me wear a foley catheter for 18 days in hopes that giving the bladder a rest would heal the possible fistula. Another tampon test afterwards revealed it did not work. I was referred to a specialist, who ran a blue dye test in his office (cystoscopy?) and it revealed a small fistula. He said I was fortunate that mine was small, many women with this problem have heavy leakage and require poise or depends pads. He ran an IVP test to make sure it was not complicated (requiring an abdominal repair). It wasn't so he did a vaginal repair (much easier recovery than TAH). I had to wear a foley cath for the first week. This is the end of the 2nd week, and I am still having some spotting (brown, like the end of a period) but it doesn't appear to be urine, so I'm crossing my fingers for my end of the month dr appt. where hopefully he'll tell me it was a success!
From talking to the other fistula sisters here, I've learned that drs will want at least 3-4 months in between surgeries to have you heal and the swelling go down before attempting a repair. It seem there is more success (at least on these boards) with abdominal repairs, which did make me a little unsure of doing a vaginal repair. But ultimately, I went with the advice of the surgeon, who is highly respected, and has done many of these repairs.
Keep seeing drs until you get some answers. I don't know if you have a fistula, or other incontinence issues, but something is definitely not right. I hope you can find out soon and get the help you need! I will be praying for you-let us know what you find out.

Shannon,



I, too, am a fistula sister.

The bladder is a very touchy organ, and sometimes it does take awhile for it to perk up after surgery. However...here are some of the symptoms I first noticed when I had the fistula.

It started out with damp undies and then progressed to needing the biggest, thickest pads I could find...and using 2 at a time. I also had many, many bladder infections. Not UTI's; there was no pain or burning upon urination, but my bladder ached all the time.

The urine stream did not go straight into the toilet; it would hit my uppermost thigh. It became a challenge to find toilet paper that didn't feel like sandpaper. If you have a fistula, it would not be uncommon to have urine near the rectum.

If your dr is volunteering to send you to a good bladder specialist who is well-acquainted with female urinary problems, I would say go for it! You know your body better than any one else, and you know when something is just not right, and not getting better. You want the best doctor for the kind of problem you are experiencing.

Good luck, and keep us posted!

Dee

Thank you, ladies, for sharing your experiences with me. I am still having problems, but have a dr. appt. on Thursday, so I am trying to be patient. I'm taking Detrol LA now, and it seems to help some with the overactive bladder, but I still have no sensation or ability to void normally. I do have that air bubble in my urethra right before the urine comes out..What is the reason for that?
Thank you again, after reading through many bladder-related articles, and your expertise, I feel a little more educated and ready to ask all kinds of questions when I see my doctor.
Happy Holidays!
Shannon

Hello all:
I went for vesicovaginal fistula(VVF) repair on March 2 (following my TAH on Jan. 17). There were the not to be unexpected lesions on the bladder from the fibroids which were the reason for the TAH. The urologist was called into the TAH surgery and did some repairs which all thought were good to go. The evening before my 2-week appointment, I stood up and felt a flood of urine from the vagina. Symptoms - there were none, nada, no warning! I went to the 2-week gyn appt only to be sent to the uro who immediately socked in a foley in the hopes that the VVF would miraculously "heal and close." After 14 days of the foley, it was apparent that this wasn't going to happen. I spent the next 2 weeks with adult diapers and bladder control pads. If I woke myself every 2 hours, I could make it to the toilet and not have a complete mess. Sometimes, I would stand up and feel myself urinating with no ability to stop or control it. The uro says that is normal - bladder not filling up, so the sensation of it being full and needing to empty isn't there - there's a hole in the bladder leading to the vagina, so no feeling like you need to go! So the day after my 6-week TAH appointment, I went for OP VVF repair. The 1.5 hour surgery turned into 4 hours and I ended up staying in the hospital for 2 nights! This has been a very frustrating and painfully uncomfortable situation for me. I came home with a catheter which had to be changed the day of discharge to a Kuday (sp???) from a regular foley because the tip points upward in the bladder. The bulb burst, (yes, burst) at 11:45 p.m. on Thursday and again at 1:20 p.m. on Sunday. Both necessitated trips to the ER for 2 and 5 hour waits respectively - a woman with a catheter needing reinsertion is not nearly so important as EVERY OTHER problem that came in Sunday afternoon. Monday, I had a cystogram despite being ill with the stomach virus I caught in the ER from everyone else! At around 2 p.m. Monday afternoon while sleeping, I heard a pop and felt a twinge and, yes, you guessed it, the catheter bulb exploded again. I called the urologist, who thank goodness had looked at the cystogram results. The good news, is I'm NOT LEAKING from the vagina! The cystogram showed the VVF closed! I am hopeful and cautiously optomistic at this point. However, I am still leaking because I'm trying to get my bladder control back. I have been assured by the uro that this will come. I do have sensation and if I go immediately, I do fine. However, I'm not getting a lot of warning. Anyone else have an idea how long it takes for this sensation of needing to go fully returns? The other problem, I have a very painful incision on the left labia where the "fat pad" was removed. I mean painful to the point of needing pain pills for the swelling and some bloody drainage from the area. Of course the leaking of strongly acidic urine is also making the area raw - I recommend A+D Ointment with Zinc Oxide for some relief. If I'm not feeling that I'm progressing, I'll consider asking for Detrol LA or something when I see the uro in 3 weeks. On a positive note, I am doing spectacular from the TAH. The VVF was transvaginal and I can honestly say that this has been much more uncomfortable and painful than the whole abdominal incision and recovery. Don't know if it's because it was only 6 weeks post TAH, but I spent an entire week following the VVF repair sleeping and taking pain pills and barely took any pain meds with the TAH. Hope this helps someone out there.

RollaMO

Hello

I'm sorry to hear that you are going through such awful times with your bladder it is just another complication you don't need.

I had my bladder operated on last July amd I can honestly say that once it is touched it is never really the same again. I had little control for the first few weeks after having a foley cath in for a very long time. I was regimented in my bladder control as I had no real urge to go when i was full just an urge to go all of the time...which I wasn't prepared to do. Basically I have spent the last few months holding my urine for 1 hours then 2 hours then 3 hours eventhough i feel like I need to go all of the time...and I mean feel like I really need to go. I spent a few weeks sitting crossed legged just to try and hold it for longer.

After a few weeks I could hold it for longer more easily. Bladder retraining can take quite a while and eventhough I have helped the situation by doing it I still do not feel anyway normal. I feel the need to go all of the time whilst walking around etc but I have to try and ignore it as I know that my bladder is just plain irriatable.

I think that overactive bladder meds like Detrol or Vesicare (which I found better than detrol) are a very good idea for you as it would calm your bladder down and give it a chance to get over this ordeal. I'd phone and get them now not wait another 3 weeks.

The other thing you could do is take all of the acidity out of your urine whilst it is irritating your skin, over in the UK it has a different name so I'm hoping someone else in the US will tell you what it is called over there (prelief???...I don't really know)

It will get better but it will take a little while so hang in there. Wishing you a better week to come
best wishes
nichola

nnodg:
Thanks for the encouragement. I go back to work on Monday (3/19) after a much longer leave than anticipated or planned. Of course, I'm still dripping - I guess the good news is that it doesn't appear to be from the vagina! So I guess the surgery worked. I find that if I'm lying down or sitting, I seem to be able to control better. If I have to stand up or walk the bladder just seems to spill - like the uretha is a wide open hose. After seeing little improvement over the past few days, I think I agree with you, about not waiting the 3 weeks. I'm calling Monday afternoon to see if I can get something to help with control. I asked about getting control back after having a foley and the surgery and was assured that things would work right eventually. Am I too impatient??? I want it now! I'm just plain tired of being wet!

RolloMO
Sorry to hear you are having trouble after your VVF. I too agree that when the bladder has been handled in anyway it can play up for a while after. I found that after my C Section when I had my boys and also after my TAH. I too have the joy of having my VVF repaired on 3rd May by two experienced surgeons. Nnodg thank you for pointing me in the right direction!

I don't think you're impatient it must be awful for you, I don't think there can be anything worse for a woman to have to go through than that.

They do tell you that everything will work again okay because they say they don't go near anything around the bottom of the bladder of the pelvic floor/support underneath but I don't really think it works like that, just the fact that it has been touched directly and stitched i found to be enough to send my bladder off, and you can't help it really.
You know when you get one of those really sore tiny little paper cuts that drive you mad....well they've stitched up one of the most sensitive organs so i can kind of understand it although it doesn't help when the symptoms are so difficult and embarassing to deal with. I'm hopeful this week will be better for you.
Blondie I hope you have had a good week that's another one gone!!and counting.
Best wishes nnodg