scheduling sacrocolpopexy and cystocele repair...more than a little scared

Posted by wandili @wandili, May 26, 2012

scheduling sacrocolpopexy and cystocele repair…more than a little scared

@baxtersmom

Whether you feel you would like to avoid mesh or not, please make sure to discuss with your surgeon the likelihood that your prolapse will reoccur after your surgery. In my case, I had the mesh because the 3 top urogynecologists in Austin, TX all recommended sacrocolpopexy using the Da Vinci robot and this procedure uses mesh. I was terrified of it at first and delayed my surgery for many months for this reason. I discussed with all of them why they wanted to use the mesh and they all talked with me about the condition of my ligaments (very weak) and the extent of my prolapse (stage 4). Both of these situations made it almost certain that a simple ligament repair would likely not be lasting and that in a few years there was a high probability that I would have to undergo another surgery to repair the prolapse all over again. So just please make sure that you discuss how extensive your prolapse is (what stage it is) and the condition of your ligaments (whether they can be repaired in such a way that there is a good chance they will hold). I am sure we all hope that if we have to have this, that we only have to do it once. In my experience most of the more experienced doctors do use mesh but if you are predisposed against mesh as I was initially, please just ask these 2 important questions. Once I realized that the mesh used today was not the mesh we hear about in the lawsuits and that doing the surgery without it would likely result in me having the prolapse reoccur, I opted for the mesh and the surgery I have previously described in this forum. I have not had any issues and am so glad I had the surgery. Not trying to convince anyone that mesh is the way to go, just suggesting some questions to ask your surgeon before proceeding with or without mesh.
Best to all.

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Thank you so much! Very helpful!

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@baxtersmom

Whether you feel you would like to avoid mesh or not, please make sure to discuss with your surgeon the likelihood that your prolapse will reoccur after your surgery. In my case, I had the mesh because the 3 top urogynecologists in Austin, TX all recommended sacrocolpopexy using the Da Vinci robot and this procedure uses mesh. I was terrified of it at first and delayed my surgery for many months for this reason. I discussed with all of them why they wanted to use the mesh and they all talked with me about the condition of my ligaments (very weak) and the extent of my prolapse (stage 4). Both of these situations made it almost certain that a simple ligament repair would likely not be lasting and that in a few years there was a high probability that I would have to undergo another surgery to repair the prolapse all over again. So just please make sure that you discuss how extensive your prolapse is (what stage it is) and the condition of your ligaments (whether they can be repaired in such a way that there is a good chance they will hold). I am sure we all hope that if we have to have this, that we only have to do it once. In my experience most of the more experienced doctors do use mesh but if you are predisposed against mesh as I was initially, please just ask these 2 important questions. Once I realized that the mesh used today was not the mesh we hear about in the lawsuits and that doing the surgery without it would likely result in me having the prolapse reoccur, I opted for the mesh and the surgery I have previously described in this forum. I have not had any issues and am so glad I had the surgery. Not trying to convince anyone that mesh is the way to go, just suggesting some questions to ask your surgeon before proceeding with or without mesh.
Best to all.

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Are you in Facebook? Will be nice to stay in touch to share experiences. I will probably have the surgery with Dr. Antonini.

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@veronicat
I hope that your experience is as good as mine. I assume you have seen him already.

I am happy to stay in touch with you here on Connect.

When are you planning to have the surgery?

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@baxtersmom

@veronicat
I hope that your experience is as good as mine. I assume you have seen him already.

I am happy to stay in touch with you here on Connect.

When are you planning to have the surgery?

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I will have surgery probably end of August. I need to arrange the travel. Coming for far- Europe.

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@lisalucier

Hi, @pizon – how are the nerve issues you've talked about previously?

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Hello and Thank you for asking….I'm still not able to work I am better then I was but I still have the sensation of something in side that isn't there and I still get pain on the left side I find yoga is the best help for me but I am done with any drugs (they all made me sick) i'm trying to use herbs valerian root and hops and cbd oil have seemed to give me the most relief thank you again for asking

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@veronicat

I will have surgery probably end of August. I need to arrange the travel. Coming for far- Europe.

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Hi, @veronicat – I also had prolapse surgery, 7.5 years ago. I'd known it was an option for awhile and tried a pessary, but was not super fond of that. Finally after the holidays that year, I came to the point where I could only exercise for about 20 minutes at a time without running to the bathroom, I had to go buy some serious pads to deal with leakage, and then my bladder started to protrude such that I was uncomfortable and walking kind of like a cowboy. It was also a blockade in the bedroom, and I knew that was not a good thing for my marriage. All these factors put together, in addition to the fact that we knew we did not want to have any more children, pushed me over the edge into deciding to have the prolapse surgery.

Just wanted to ask about what symptoms you are experiencing now that have prompted you to decide to go forward with surgery?

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Hello @veronicat and @lisalucier
I would be curious also to know what symptoms have made you decide to have the surgery @veronicat. Like @lisalucier my experience with the pessary was not a good one at all. For about 3 weeks it was great. And then I began to have bleeding. I am sure I did not notice it at first because I had the pessary in but at some point I realized I was bleeding as it came through the pessary. I could not get it out and had to have the doctor take it out. I waited a while and then tried the pessary again and sure enough began to bleed again. At some point the rubbing caused bleeding even without a pessary. Since I had been through menopause a few years before, I really wasn't interested in dealing with something resembling periods again (except less predictable). If I would do anything at all exerting, I would start to bleed. And then, woke up one morning and the prolapse was protruding so much I could not urinate. When I went to my urogynecologist, he used a catheter to clear my bladder. He looked at me and said something to the effect of "We are here for you but I think you would be so much happier if you would get this fixed." This was Dr. Antonini who I have mentioned before. I love him. No pressure, No judgement. He is just a very kind man and talented surgeon who understands women extremely well. Probably due to the fact that he is married to a gynecologist. Anyway, there are a lot of studies about the fact that pessaries are not a long-term solution for very many women. Something like one year after trying it, only a very small percentage of women are still using one. Someone mentioned the other day on this forum that they were using another device to support their prolapse but I don't believe they said what it was. I would be curious to know. @lisalucier did you have a surgery with mesh? Just curious because I think this is the part that causes a lot of us to delay our surgeries. But it turned out it was not really anything to be afraid of, at least in my case and was really the only option for me unless I wanted to have the surgery again in a few years. Best to you @veronicat. You will be so glad once this is behind you..

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@baxtersmom

Hello @veronicat and @lisalucier
I would be curious also to know what symptoms have made you decide to have the surgery @veronicat. Like @lisalucier my experience with the pessary was not a good one at all. For about 3 weeks it was great. And then I began to have bleeding. I am sure I did not notice it at first because I had the pessary in but at some point I realized I was bleeding as it came through the pessary. I could not get it out and had to have the doctor take it out. I waited a while and then tried the pessary again and sure enough began to bleed again. At some point the rubbing caused bleeding even without a pessary. Since I had been through menopause a few years before, I really wasn't interested in dealing with something resembling periods again (except less predictable). If I would do anything at all exerting, I would start to bleed. And then, woke up one morning and the prolapse was protruding so much I could not urinate. When I went to my urogynecologist, he used a catheter to clear my bladder. He looked at me and said something to the effect of "We are here for you but I think you would be so much happier if you would get this fixed." This was Dr. Antonini who I have mentioned before. I love him. No pressure, No judgement. He is just a very kind man and talented surgeon who understands women extremely well. Probably due to the fact that he is married to a gynecologist. Anyway, there are a lot of studies about the fact that pessaries are not a long-term solution for very many women. Something like one year after trying it, only a very small percentage of women are still using one. Someone mentioned the other day on this forum that they were using another device to support their prolapse but I don't believe they said what it was. I would be curious to know. @lisalucier did you have a surgery with mesh? Just curious because I think this is the part that causes a lot of us to delay our surgeries. But it turned out it was not really anything to be afraid of, at least in my case and was really the only option for me unless I wanted to have the surgery again in a few years. Best to you @veronicat. You will be so glad once this is behind you..

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@baxtersmom – interesting you asked about the mesh. I recall all the news stories about mesh, and know what you are referring to. I can't remember the timing of that with my surgery, however.

I did not have any mesh in my procedure. I also have had my bladder fall down partway again (I've gotten familiar with the feelings, as I'm sure have many of the others in this discussion), and I saw the urogyn's NP, who confirmed that this winter. Evidently the bladder falling again to some degree happens to a certain percentage of women around 7 years out from surgery, which is where I am. I was also told my ethnicity (Northern European) puts me at greater risk for stretchy ligaments (i.e., more likely for the bladder to fall back down).

What you've said really kind of makes me wish I had the mesh for extra "stay up" insurance. I would be very, very slow to have this surgery again, as the recovery was kind of a bear in my case. Worthwhile to have it fixed, but it took a lot of my time to get fully better (as in not having to take a nap daily, which is not normal for me). Supposedly having a revision also has the potential to make things too short, and can be uncomfortable in the intimacy department.

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@lisalucier

@baxtersmom – interesting you asked about the mesh. I recall all the news stories about mesh, and know what you are referring to. I can't remember the timing of that with my surgery, however.

I did not have any mesh in my procedure. I also have had my bladder fall down partway again (I've gotten familiar with the feelings, as I'm sure have many of the others in this discussion), and I saw the urogyn's NP, who confirmed that this winter. Evidently the bladder falling again to some degree happens to a certain percentage of women around 7 years out from surgery, which is where I am. I was also told my ethnicity (Northern European) puts me at greater risk for stretchy ligaments (i.e., more likely for the bladder to fall back down).

What you've said really kind of makes me wish I had the mesh for extra "stay up" insurance. I would be very, very slow to have this surgery again, as the recovery was kind of a bear in my case. Worthwhile to have it fixed, but it took a lot of my time to get fully better (as in not having to take a nap daily, which is not normal for me). Supposedly having a revision also has the potential to make things too short, and can be uncomfortable in the intimacy department.

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Dear Lisa, from my understanding you had surgery without mesh, and now you have symptoms of prolapse again.
I had total hysterectomy due to endometrial cancer, stage 1. That was 3 months ago. After the hysterectomy my bladder prolapsed. I feel heavy down there. Feels like something is falling out. I don’t have any problems with urinating and leaking. Just the bladder. So me being 50 and still very active, live exercising I have decided to do surgery in US because I believe you have the best Urogynecologiest in the world.
Just don’t know who to choose. Looks like Texas has few good surgeons. Also Mayo Rochester – has some good doctors.
I will probably come to do the surgery in end of August/ September.
How long you prolapse surgery without mesh last it? Regards

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@veronicat

Dear Lisa, from my understanding you had surgery without mesh, and now you have symptoms of prolapse again.
I had total hysterectomy due to endometrial cancer, stage 1. That was 3 months ago. After the hysterectomy my bladder prolapsed. I feel heavy down there. Feels like something is falling out. I don’t have any problems with urinating and leaking. Just the bladder. So me being 50 and still very active, live exercising I have decided to do surgery in US because I believe you have the best Urogynecologiest in the world.
Just don’t know who to choose. Looks like Texas has few good surgeons. Also Mayo Rochester – has some good doctors.
I will probably come to do the surgery in end of August/ September.
How long you prolapse surgery without mesh last it? Regards

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@veronicat Urogynecology is such a new specialty that it can be difficult to find a good one. I live in NH and there is only one up here, and she was booked about 6 months out. She is supposed to be good though. I didn't want to have that long so I went to Mass General in Boston. They have a department with 4 urogynecologists. I know there are other good ones in Boston also, my daughter's sister-in-law is one.
Good luck with this. I have not had prolapse, just severe retention problems which I plan to get a botox injection for.
JK

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@veronicat

Dear Lisa, from my understanding you had surgery without mesh, and now you have symptoms of prolapse again.
I had total hysterectomy due to endometrial cancer, stage 1. That was 3 months ago. After the hysterectomy my bladder prolapsed. I feel heavy down there. Feels like something is falling out. I don’t have any problems with urinating and leaking. Just the bladder. So me being 50 and still very active, live exercising I have decided to do surgery in US because I believe you have the best Urogynecologiest in the world.
Just don’t know who to choose. Looks like Texas has few good surgeons. Also Mayo Rochester – has some good doctors.
I will probably come to do the surgery in end of August/ September.
How long you prolapse surgery without mesh last it? Regards

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@veronicat – knowing how challenging my symptoms got very near to when I decided to have prolapse repair surgery, just wanted to check in with you on how things are going with your symptoms. Are you still feeling the heaviness? Does anything make it feel better?

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@lisalucier

@veronicat – knowing how challenging my symptoms got very near to when I decided to have prolapse repair surgery, just wanted to check in with you on how things are going with your symptoms. Are you still feeling the heaviness? Does anything make it feel better?

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Hi Lisa, At the moment I am doing some Kegel exercise so this helps little.
I also spent lots of time in my bed, can’t stay longer than 2-3 hours on my feet. I get very tired and feel heavy down there.
Hope I can go soon to US and do the surgery.
Lisa, how long your repair after the surgery last before you felt that you have slight prolapse again?

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@veronicat

Hi Lisa, At the moment I am doing some Kegel exercise so this helps little.
I also spent lots of time in my bed, can’t stay longer than 2-3 hours on my feet. I get very tired and feel heavy down there.
Hope I can go soon to US and do the surgery.
Lisa, how long your repair after the surgery last before you felt that you have slight prolapse again?

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Probably 6 years, @veronicat, before some dipping down again of my bladder.

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@lisalucier

Probably 6 years, @veronicat, before some dipping down again of my bladder.

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Thanks for replying, Lisa.
Do you mind sharing who is the doctor who did your surgery without mesh?
Kind regards

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@veronicat

Thanks for replying, Lisa.
Do you mind sharing who is the doctor who did your surgery without mesh?
Kind regards

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@veronicat – my guess is that it was done that way because that was standard several years ago when I had my surgery.

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