fistula????????

Hi---I'm back with a new question. I'm a 47 y/o me-maw TAH in '02. 6 wks later, I have Vaginal Vault Prolapse. Then, 3 mths later,Sacro, sling, mesh the whole nine yards. Now, going to drs for bleeding, discharge and pain in lower left groin. The oncologist and reconstuctive surgeon I saw 2 wks ago suggested I go back to original surgeon and have surgery to cut the mesh in half. It would be left inside me. This is what is holding my vagina in place!!! but they indicated that I have enough scar tissue to hold it??? That didn't seem like good news to me. Given the analogy from the drs, i'm having erosion and my body is rejecting the mesh. I spoke to a gyno in New Orleans who said the mesh needed to come out asap or I would be left with a whole (fistula). Can anyone enlighten me about the procedure that would cut the mesh? Where would I get educated on the procedure? Could this possibly be a solution? Or is this a band-aid? Secondly, how serious would a fistula be? Could the scar tissue be what is causing all my pain? Thanks in advance to anyone who can help.

It sounds to me as if you are receiving conflicting information from different sources. One says leave the mesh in, the other says take it out. That sounds confusing. I do know that once scar tissue has formed, the mesh often becomes unnecessary since it is often absorbed into the body's own tissues anyways--at least, that's how my own UroGYN explained it to me. It's why when a too-tight sling is "cut" afterwards, it often doesn't compromise the support for which it was originally done.

On the fistula thing, I definitely do NOT understand those or what truly causes them. I hope one of the "fistula sisters" here on the board will help you out with more info about them. You can do a search for more information by clicking on the purple SEARCH arrow at the top right bar of this page and type in "fistula" to see the threads relating to this topic. Fistulas are miserable and difficult to repair from what I've read about them. Wishing you the best of good luck in your research on this subject............

Mosfolly,

I am a fistula sister. Fistulas are supposed to be a rare complication of abdominal surgery or you can get them from radiation.

A fistula is a "communication" that is formed between two organs where there isn't supposed to be. In my case, my bladder and vagina attached, so urine was pouring out my vagina along with coming out the bladder. It's like the two organs glued themselves together and then a little opening occurred between the two of them, so there was a little passageway that was formed.

Are fistulas serious? You bet! Mine required 2 surgeries to repair. They can be tricky to find and trickier to fix. You don't want to do anything that may cause you to get a fistula.

I don't know much about the mesh problem you are having, but if you have any questions about fistulas, let me know!

Good luck on your road to wellness!
Dee

Hi mosfolly, just to say you are not alone, I am just going through this right now too, Dee has been giving me all sorts of lovely advice and so glad I listened about getting to the Urologist, my gynae had no idae what was happening but took it apon himself to get in and much around with my bladder (post LAVH) and think he has made matters so much worse, had I know then what I know now 2 weeks later would have been to urologist right away. I hope all goes well for you, will follow your thread with interest too... As Dee says these are a major rarity and should not happen in hysterectomy type surgery!!

Thinking of you
Kazzy

Orahdeb thank you I also wanted to read all the fistula threads so thanks for that handy hint, still working my way about this site, so much wonderful information.....

Hi Ladies ---thnx so much for responding. I think I'm getting really desperate here. dk what i'd do w/out this site and the advice from more enlightened women like you. I went Fri to surgeon who did original repairs and he scared the life out of me. He is trying to clear infection first. I don't think that's going to happen. After all, I've had 9 consecutive rounds of antibiotics. If this is successful, he will go in vaginally and repair hole from erosion. If not, he will do exploratory surgery to remove mesh. He is afraid that my bowel is involved now tho, and by chipping thru? all the scar tissue, he will inadvertantly injure my bowel, resulting in, most probably, a premanent colostomy. ??? He didn't notice the prob with sling that the other 2 drs saw. But he only did a very brief exam. He also will not remove scar tissue, which he believes is the root of all my pain, because it is the glue holding me together. When I asked about the pain, he indicated that this was something i'd have to learn to deal with. Needless to say, I'm still looking for a competent surgeon. However, Sun, while walking around Lowes, my rectocele dropped into my vag and we had to leave. sorry, i know this is gross....I just don't know what I'm going to do.

Dee - did you see my follow up question....response to fistula??? After, reading over my new post, i was wondering if the drs comment about mesh 'involvement' with bowel might mean a fistula? Thanks for all your help....I really don't think I'd be able to remain sane w/out this site and advice....

Mosfolly,

I am so sorry to hear you are receiving conflicting information from the doctors. It is hard enough to know what to do when everyone agrees.

I really don't know if the doctor meant you had a fistula...mine was caused by a surgical error, not mesh erroding, so I don't know what your doctor was trying to tell you.

I will say that you need to find a doctor you are comfortable with, and someone you can trust. Do you live by a bigger city? The dr who eventually fixed me was associated with a big teaching university. The level of care I received there was so much different than at the local doctor/hospital. Even though it was quite a hike every time to go see him, it was well worth the trip.

Hang in there,
Dee

mosfolly,
That saying by your doctor is almost exactly the same as my gyn said about me having my rectocele repaired - now that I have heard that twice I am beginning to wonder........
My doctor said the same thing that the scar tissue is like cement and if a chip is made in it it can cause the repair to fail and I would end up with a permanent colostomy. Although your doctor was talking about the mesh and mine was talking about my sphincter repair area.
Keep me posted as to how you are doing - I am currently researching having my rectocele repaired - I just can't stand it anymore. Thanks.

Hi Dee - I am currently searching for the 'right' dr. I live between jackson, ms and baton rouge, la. i've been referred by gyn to jackson and they referred me back to br....to dr who did surgery. he is the one who suspects bowel invovlement. I have been on the phone with HERS foundation and am in the process of getting them my med records. I understand that they have a referral service....? My pastors wife is also trying to line me up. In the meantime, my recto dropped into my vagina to the point that i can barely walk and i have to manipulate colon to have a bm....gross huh? We've hired someone to keep 2 y/o grandson (who lives with us) in order to buy the time to find a competant surgeon. I am also trying to find out how to go about researching drs and papers on the subjects of concern. Any ideas?


bowlingrr --- at least u r getting the recto fixed....my hat is off to you. I wish I could just deal with one prob at a time.....lol. please let me know how ur surgery goes....i'll be praying for you.

on another note....have any of your drs told you that your prolapses were caused by smoking? or being fair-skinned or blue-eyed? just curious....

mos