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Vaginal Fistula after hystorectomy Vaginal Fistula after hystorectomy

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Unread 02-20-2004, 11:22 AM
Vaginal Fistula after hystorectomy

Hi all - I wanted to thank "Bright Future" for pointing out this message board as I did not know it was on this site. Basically I am 4 weeks post op from my hystorectomy - and having the vaginal fistula - they said they would not operate for 2 months post op.
Questions - yikes - I have a few -
My surgeon says that he will do the surgery via the abdomin - they will cut me on the same incision that they did the hystorectomy - anyone else have this done?
How long was your hospital stay if you had this done?
They are saying I will have a cathetor via my abodomin for 10 days -
What is in store for me? Is the recovering difficult?
The leaking is driving me CRAZY - I am currently wearing sanitary pads - has anyone tried the "depends"?
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Unread 02-20-2004, 03:04 PM
Vaginal Fistula after hystorectomy

Hi there..

As you know I had a vaginal repair so I can't really answer your questions..but we have a couple 'newly crowned' sisters this week who're just starting their recoveries from their abdominal repairs..they've posted on this board (FluffyLemur & Salamanda111) so you may want to read what they said about their experiences. AuntyClaus and Deb also had their repairs this month and auntyclaus has also posted under the thread "Anybody heard from Auntyclaus or Deb?"

I did have a cath for 16 days after, but it was a foley (from urethra & coming out 'underneath') so I can't help much with the supra-cath question either.

Not much help, am I?

One of our fair sisters (azhoney) is having her surgery TODAY!! She's on my mind and in my thoughts and prayers. I guess she'll be posting too, once she gets home & feels up to it.

Ruthnova is going to be having an abdominal repair soon and has been extremely brave and patient!!!!

I may have missed a couple more fistula sisters too b/c though this complication is supposedly 'rare', there seem to be quite a few of us! We are all amazing, strong women & you are now one of us!

For the record, I lived in 'Depends' at night and wore 'Poise' incontinence pads by day for 4 months..Depends worked great for me.. they were much like underwear & allowed me to sleep through the night without lying in a cold puddle.

Anyway, I'm sure some of our abdominal repair sisters will be by before too long to give you lots of info & answer any questions you have.

Feel free to email me or PM me anytime! You can get through this and you are NOT alone, by far!!

Unread 02-20-2004, 06:49 PM
Vaginal Fistula after hystorectomy

Hi Dawn,
I'm sorry to hear that you are joining our (not so) exclusive club..but let me say on behalf of the 'fistula sisters'...welcome!! I think you will find looking at some of the past posts really helpful and know that we are around to answer what questions we can or just offer those much needed s.

As Melinda noted, I am just on the post-op side of my journey down this road. I had my fistula repair Feb.12 and had it done abdominally, through the same incision as my hyst (which was also my c-section incision from 17yrs ago-that thing has gotten a work out!). I have a supra pubic catheter in at the moment and I remember how much the thought of one of them scared me. But I must say, having had a foley as well early in my fistula leakage period, I'm pretty happy with how the supra is working out. (I probably didn't say that in my posts just after surgery, but I was in alot of pain then and not too happy with anything). It's been 8 days now and I'm getting pretty used to the thing, and to walking around (yes, girls, i'm WALKING ..not babystepping, with my 'purse' pet name for my cath bag..hanging off my housecoat/arm, whatever.

I was in the hosptial from thursday (surgery was 10am) and was released the following monday evening (he said i could have waited til morning, but i just wanted out). I will be having the sp catheter removed next thursday, so 14 days with it. I won't lie and say the surgery is easy or that you'll be jumping up in a week or so. It is still an abdominal incision, so just like the hyst, the recovery is at least 6 weeks. I know this time round, I will be taking it even easier than i did with the hyst...I was probably too active too soon. After having been in pads (daytime) and depends (nighttime) for 4 months, I don't want to do anything that could jeopardize this healing. I feel pretty good today though and that makes me happy because i've felt pretty rough up until now. Took quite a while for the swelling to go down and my bowels to get moving so I was hard, swollen, sore, and just downright uncomfortable. I'm not sure about other's experiences with the catheter, but I had alot of blood in it the first week which my doctor considered normal..i'm running 'clear' today for the second day in a row and that makes me really happy too!!

Again, I'm really sorry that you have the dubious pleasure of joining our group. (no wait, that didn't quite come out as i meant it..i LOVE our group of fistula sisters..being part of this group has, actually, been a high point in a very low period of my life). I know how awful it is to be leaking all of the time, it is just so emotionally and physically draining (no pun intended). It is good though that you know what is wrong and that you will be having it fixed. The wait time is to give your body a chance to heal from the first surgery .. it may seem like a long wait, but repair day will come soon enough. We are here for you. Post whenever you have questions, or just when you want to vent. Stupid fistulas put you in a difficult place, but we have either been there or are still there, and we are here for you.

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Unread 02-20-2004, 11:31 PM
Vaginal Fistula after hystorectomy

Hi Dawn,

Glad you found us okay, you will find lots of answers to your questions here and lots of friendly support so don't be afraid to ask!

I have not yet had my surgery but am awaiting an abdominal repair, I am fortunate enough to be coping with pads not much bigger than sanitary pads but still wake up twice during the night to change. I have been told that I will need a vertical incision, with a supra-pubic catheter ( the one that comes out of the abdomen ) and a foley catheter ( the one from the urethra ) and an abdominal drain. I will be in hospital for 8 days, the foley can come out after 10 days and then the supra stays in for another 10 so 20 days in total. Having said that, I don't feel there is much point in going home with 2 catheters for 2 days then having to go back to the hosp to have one out, so I might opt to stay in hosp for 10 days and just go home with the supra. We will have to see! I was told it would be an 8 week recovery period.

As horrendous as more major surgery sounds, it does appear that the abdominal surgery has a much higher success rate than vaginal. I had a vaginal repair and it failed after 4 months, so I guess at least this way we know we should be fixed once and for all. I am sorry you have joined us, it is emotionally exhausting and depressing to suffer incontinence on top of the hysterectomy and you will no doubt feel a whole range of emotions before coming to terms with everything. But rest assured, you are NOT alone, and these fistula sisters have been the saving of my sanity.

Feel free to post as much as you want, and PM me if you like. By the way, do you have a date for the surgery yet? We will add you to the list of fistula sisters in waiting!

Best wishes,
Unread 02-21-2004, 08:03 AM
Vaginal Fistula after hystorectomy

Hi dawn--
so sorry you have a fistula!!!! we are here to help you along the way.
it is definitely survivable, esp if you have a sense of humor.
Get the Serenity or Tena bladder pads--they are much better than menstrual pads, hold more and have an odor control core. Any good bladder pad will do.

i had an abdominal repair and i am also a 4XL which made my surgery harder. it was 5 hours and they use my entire hyst incicsion (22 staples). it wasn't easy in the hosp, or the first few days at home, but i am feeling really good now.

It's all survivable, if you keep the end (excuse the pun) in mind.

Hang in there!!!! you will be dry!!

Fluffy Lemur
Unread 02-21-2004, 09:02 AM
Vaginal Fistula after hystorectomy

Hi Dawn, glad you have found us fistula sisters. It really is a godsend to find this site and the support all the sisters give each other.

I too am having adbominal surgery to repair my fistula in just over a weeks time so will let you know how get on.

Be brave, the time soon comes round for the op and just dream of those dry days.

Unread 02-22-2004, 08:51 PM
Vaginal Fistula after hystorectomy

Hi Dawn,

I'm sorry you've had to join our Fister Sister group, but we've really been able to help each other out.

We shared a ton on info in the thread called It's Official - Fistula at:

A lot of information was shared there and I wrote the bulk of my story.

Yes, I wore Depends and somedays wore those plus the poise pads. They tried to fix me vaginally without success, so they opened me up in the exact incision they did the hyst from 5 weeks before. I had the surgery done on a Tuesday and was released 5 days later on Saturday. I had 2 catheters, 1 foley and one abdominal, called a supra pubic.

I will celebrate my 4 month anniversary this Saturday. I am much better now except for my swelly belly. From the sounds of things, that may take months to get rid of.

Ask any of your questions here. We're here to help you!

s to you!

Unread 02-24-2004, 01:39 PM

This is a message to all the fistula sisters out there...I'm an old fistula sister, from way back in 2002! I had my hysterectomy 8/02 and developed the vv fistula 9/02 and was "repaired" 11/02...spent a lot of 2003 recovering (it takes about 10 total months) and am doing well now. This website was a lifesaver.

I am so upset to see so many new postings on fistulas. You can visit my "stuff" under hansolo...I had a few fellow fistula sisters then and we helped each other sooooo much. I even developed a deep friendship with one in another state and have visited her...I plan to see her again next month!

Anyway, you gals hang in there. I know it seems like this is the most terrible thing that could happen, and it just about is. I cried, was scared, freaked out, hated everything, and cried some more. The most important thing is finding a good doctor that is a specialist and has done many repairs. The catheters will drive you crazy, but the pee coming out uncontrollably is worse. I had the foley for three months and the supra pubic for three weeks.

It will get better. The only problem I have now is I tend to get bladder pain and infections after sex with my husband...he says that I'm allergic to him! I think I'm just probably not having enough!

Thought I'd check the website to see how rampant this problem is now..and I'm happy to see that you are all supporting each other as my friends did back in 2002.

Take care and just remember that this too shall pass, but at the time you're going through it, it seems like it won't. Hang on to the future and don't let anyone trivialize your issue unless they have walked a mile in your shoes.

Jocelyn (hansolo)
Unread 02-24-2004, 06:19 PM
Vaginal Fistula after hystorectomy

I'm another old fistula sister who was helped sooooo much by this site and especially, Jocelyn (hansolo). It has been a little over one year since my repair, and as Joce said, it does take a while for some of us to heal completely.

I also get uti's, (more like honeymoon cystitis!!), and my bladder still causes me some discomfort. I think it's odd that before my hysterectomy, I never gave my bladder a second thought, and today, I am very attentive to it's every whim!

You girls hang in there, life does go on and believe it or not, this experience will make you a much more compassionate and understanding woman in the long run, as well as testing every bit of strenghth you have.

Hugs to you all!

Joce, say hi to Barbara for me!

Unread 02-25-2004, 10:22 AM
Vaginal Fistula after hystorectomy

Dear fellow sister,

Sorry you are one of the fistula sisters.

I had an abdominal repair. It was sucessful. I was lucky that I had a skilled uro who KNEW not to operate until I was fully recovered from my abdominal hysterectomy. It was 3 months exactly before I went under the knife again.

To answer some questions....

The surgery will be just like your abdominal hyst. except that you will probably come out with 2 catheter sites....the foley and the suprapubic. The reason is to let the bladder have NO pressure on it so it won't tear again.

I must admit to you that it's painful....but you will get through this because you have no choice.

I didn't wear diapers because I was cath'd the entire time waiting for the fix. I only had to wear diapers when the cath fell out 4 times and ended up in the ER until hubby learned to put a cath back....I guess it was just pulled in and out of me too much...They finally filled the solution (the bag that holds the foley in place) to the max of 30cc's of about pressure....but atleast the foley stayed in place.

It's perfectly normal to go through all types of emotions...I still do, even a year later.

Hang in there. Plan on a 6-8 week recovery after the surgery.

Please ask anymore questions as they come up. We have a lot of support here and women that have been through the same thing as you.

HUGS to you.

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