New to Pelvic Floor and Bladder Issues - Scared and Discouraged

Hi -

I had a DaVinci Hysterectomy on Dec 9. Everything was going great until 8 days later when I started leaking urine...constantly. Seems I've developed a VVF. Went to the Urologist on Monday for a quick exam, Tuesday had another test - camera inside the bladder ( I forgotten the name) and then a CAT scan. This morning I was told the results of the CAT scan and scheduled for more outpatient testing tomorrow morning. The fistula was confirmed and now there might also be damage to my left ureter.

God! I was feeling really good last week and now all this. I'm kind of freaked out. I've been wearing Depends underwear since last Thursday and yesterday they put in a Foley catheter. (the Foley is only catching 30% of my urine, the rest is still leaking from my vagina.) The doc said there's a possibility I could end up with a second catheter - out my back - directly from the kidney or ureter - if there is ureter damage.

Please - someone - tell me this will stop! I had no idea about these kind of complications from a hyster. And tomorrow's Christmas Eve. BooHoo! I'm feeling whiney and mad and why me?

Can anybody shed some light on this? Have you been through it? Or suggest some search terms I should use here to find info. My biggest worry is this idea of a 2nd catheter. And the fact that they won't do repair surgery for another 8-10 weeks. Ugh!

Looking for hugs and reassurance,
Thanks in advance,
Barb

I developed a VVF 2 1/2 weeks after my hysto. My 3 months is finally up and will have surgery the first week of January.

I don't know what if you have any urogynecologist in the area but I would let them take care of you. If there is none in the area ask the uro how many they have done in the past and their success rate. You want to make sure that they can be successful the first time the surgery is done.

I know that wearing Depends or wearing pads is frustrating. There is nothing that help in this situation. You can cut out caffene and this will cut down on some of the constant leaking.

The reason you have to wait is to give your tissues a chance to recover from hysto surgery.

Hang in there.

kwalk thanks for responding.

Did you leak the whole time? Did you have a catheter?

BarbinPA

Am really sorry to hear that you are experiencing a fistula.

You may want to scroll through the Bladder Resources Section and review items on V V F.

There are several members who have dealt with them as a result of the surgery.

Sending you

G.

I am so sorry you are having to deal with this. I do not have a VVF but had severe incontinence and know how awful it is to have to wear protection. My IC has since been corrected but I do find if I have Caffeine it wreaks havoc on my bladder.

Hopefully they can get all this fixed in a timely manner. Good luck!

im going through the sad depressed stages also...the why me and not to give to much info but def the wierd things you think you would never go through ...diaper rash and poise pads?? ugghhh. im so afraid the surgery will not be a success. i have a super pube cath in and its still maimly leaking, im so glad us women have each other i really would be lost in this on my own...thank u girls. We will stick together....

I've had a very interesting week. On Dec. 24th, my urologist did some outpatient testing of my bladder and ureters. Turns out that the bladder is ok; it's my left ureter that was damaged and causing the urine leak through my vagina. I was then sent to Interventional Radiology to have a nephrostomy tube inserted. That's a catheter attached directly to the kidney. Once the nephrostomy was scheduled I became an inpatient and was sent to a regular hospital room for recovery after that procedure. I was discharged at 7:30 Christmas Eve.

As I said in my earlier posts, I was really scared about what this whole complication was and what I would have to deal with, but it's actually not been so bad. I've got 2 catheters now. My right kidney is draining normally into my bladder and I've got a Foley catheter there. The left kidney is draining through the nephrostomy. And I am no longer leaking urine - Hooray!

Now the plan is to have the Foley removed on Monday and then I will also learn when the left ureter can be repaired. I don't think I'm going to have to wait the original 8-10 weeks the uro Doc suggested when he thought this was a VVF. That's all good news and I'm taking the good news where ever I can get it!

Also, I'm feeling really blessed to have been referred to such a great urologist. He fit me into his already full schedule 3 times during Christmas week. And my gyno doc kept tabs on me and came to see me in the recovery room. He explained how the ureter was damaged during the hyster and actually apologized for the hassle I've had to deal with because of his error. I was impressed! I know that accidents happen and I'm not one to jump at the chance to sue someone, but I wasn't really sure how my first meeting with him would be after finding out my complications were caused by his error. He was really great about it. The way he handled it gives me even more confidence is his abilities as my gyno doc.

Certainly not the Christmas Eve I had planned - but all in all not so bad.

I hope you are all having a nice, relaxing holiday week.

- Barb

Barb -

Although as you said not how you wanted to spend Christmas Eve but good news none the less.



G.

I had the same problem. I did NOT want the cath. so, I leaked for 12wks...it was the lamest, most embarassing thing that I have ever had to deal with in my life....

But so must more comfortable then the cath. I leaked all the time, standing, sitting, laying down...during sex. I am 6days post repair and I don't know how I am feeling about the repair. I am not leaking anymore... I will have a supra public cath for another week, and then hopfuly the bladder spasms with stop. But I think the foley cath tore a hole from my bladder opening...to my vaginal opening after taking a "look see" down there tonight

Best of luck to you!