New here and I have a VVF!! Lucky me.

Hi ladies,

I've posted on a couple of the other boards already, so I apologize for repeating myself.

I had a TAH on Nov 5, released on Nov 7. I had a lot of adhesions from 3 C-sections, and the doc said it was a difficult surgery, but I seemed fine. I went back on Nov 9 with an ileus and was in the hospital until the 19th. After that, I was feeling great, and had gotten my doc to let me go back to work at 5 weeks, instead of 8.

Then yesterday I stood up and GUSH. It took me a few hours to figure out what was going on....and the doc said to come to ER right away. I was diagnosed with the VVF and had a foley inserted. Today the urogynecologist called, saying it will be 6 weeks before they even evaluate me again, then another couple of weeks before they do surgery. OMG. I cannot believe this.

I'm far too uncomfortable from the foley to think about going back to work. Will it become easier? The doc put me on antibiotics daily to ward off infection, and I'm taking azostandard. I cannot take another 12-16 weeks off from my job, so I know I'm going to have to suck it up at some point and just go back, pee bag and all. But I am concerned because right now, it hurts just to walk to the bathroom to empty the bag.

I appreciate any and all advice! I did read thru several of the posts on the other VVF thread (the 76 page one!) but didn't see anyone addressing whether the discomfort eases with time.

Thanks again,

Debby

I have had my foley in for 4 weeks today. Somedays it hurts a little and other days I hardly notice it. I mostly used the large bag for the first week and a half while I was recovering from the hyster. Now I just keep on the leg bag. I need to change it more often but it is easier to move around with. I am sure that I will need to keep mine on about as long as you do. I see the Dr tomorrow for my 4 week follow up. Still leaking tons with the catheter. Will be so happy to have this all behind us.. Hang in there

Thanks Wishful! It's good to know that I may adjust to the foley and not be so uncomfortable. I would like to get back to work sooner rather than later if I can. I think it would help keep my mind off this mess!

Good luck with your checkup!

My heart goes out to the newly diagnosed vvf sufferers. I had an abdominal vvf repair 6 months after my TAH. I refused to wear a foley as all my experiences with it have been ghastly and they give me an instant bladder infection and extreme spasms. I coped with thick pads and continued to work throughout. I was lucky in that I was very close to the toilet at all times ! After my repair I had a suprapubic catheter instead of a foley, for two weaks and I have been leak free ever since. I have adhesions from the vvf surgery though which on some days really worry me, but I can cope.

I also dealt with my vvf by wearing the largest Poise pad on the market and changing it every 90 minutes. I was able to keep working as a teacher throughout this whole process. I could not imagine working with a catheter in me.

Thanks for the update. I finally got into a dr today that thinks he can help me. He could not believe how much urine that I was leaking during the exam. He did take the catheter out YEA, but he is doing the dye test and some other test... I have all ready had the IVP and cystogram He said he may need to put the cath. back in on Wed. after the tests so for now I will enjoy my 2 days bag free. He said I will definatly need surgery but can't do it untill at least 3 months post op from the hyst. I hope that I can remaine bag free. I guess it depends on the next 2 days and how much leaking I do. I have only been back from the dr for a couple of hours. Your a great inspiration to me and I appriciate your taking the time to write to me. I am glad that things are going good for you.

I'm currently on day 5 with the foley, and it's not as bad now as at first. I do find that if I move around too much though, my bladder gets really irritated. Unfortunately, I don't think I have an option....the urogyn said I need to keep the urine pressure off of my bladder so the fistula can mature. The past couple of days the leaking has decreased a lot, so perhaps I will at least be able to get rid of the pads soon.

It's very encouraging to hear from those who have walked this path already, and came out ok!! Thank you all for your replies.

Wishful....ENJOY your freedom for as long as you have it!!

Hello there- Sorry you are dealing with the awful VVF. I am now almost 4 months post op from my VVF repair. I dealt with the catheter for 2 weeks. It was terrible. I wore the leg bag during the day which made it better to deal with. My only advice about life with the bag is to make peace with it. It is temporary and is better than going through with the leak. I leaked for an entire year before the urologist figured my issue out. I started leaking after 10 days post op. I also had a illius. The catheter will help your healing.

Riled

Hi Riled,

Thanks for the input. It's been 8 days since the foley was inserted, and I have gotten pretty used to it and the discomfort is minimal now. The only real issue I have right now is that I'm still leaking ALOT, but I see my urogyn tomorrow. He had mentioned that he wants me leakfree, and may insert a larger catheter to make that happen. (Yikes). If he can get the leaking to stop, I can now see myself dealing with the foley, even at work. I'm trying to look on the bright side....I'll be the only one of my friends who doesn't have to stand in line for the ladies' room.....I can just go behind a bush and empty my bag. Lol.

Hi Ladies,

Well, I saw the urogyn for the first time today. He did a cystoscopy and it turns out the hole in my bladder is HUGE. (About the size of a nickel.) He even called his older partner in to take a look. He also tried to insert a larger catheter but after the cysto, my bladder was so sore that I couldn't tolerate it....it literally felt like my bladder was on fire. I begged the nurse to take it out, which she did....and I stood up to go the bathroom....and nearly passed out. My legs were like rubber. Anyway, the doc came back in and explained that the catheter will speed up the healing, which I told him I understood....but the pain was just too severe. So we reached a compromise---I will go the weekend without a catheter and on Monday afternoon, I go back to get it put back in. When I had the first foley inserted last week, it was uncomfortable but not like this. So I'm hoping that after a couple days the irritation will settle down and I'll be able to cope with the new catheter. He also said I'm looking at mid February for the repair. It helps knowing that at least I have a goal date now.

I honestly think it would help these doctors if somehow, they could experience what we're going thru, with the pain and the leaking and the inconvenience and the loss of quality of life.

I'm beginning to question whether I should have had the hysterectomy in the first place. Sure, I was in pain and bleeding randomly, but I've had more problems since the surgery than I did before. At least I wasn't house bound with a catheter and a towel between my legs (okay, so not a towel really, but these Poise pads may as well be).

Yikes.