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

I am 62 years old and have had stage 3 cystocele (bladder prolapse) for over 10 years and it has not bothered me much until the last year. I had a bout of bleeding due to some rubbing but it finally quit and I got checked out for uterine cancer (which I did not have). I think the bleeding was brought on by rubbing from a pessary that I finally tried due to urologist’s urging. Recently was told that my prolapse is now stage 4. Went to a urogynecologist who is highly recommended and he said the best procedure for me is sacrocolpopexy. I was a bit surprised that he wanted to do a hysterectomy and so questioned him quite extensively. He described it as a “once and done” procedure saying it would allow me to have a better quality of life and I wouldn’t have to think about it anymore. Since my mom is 96 and never had a hysterectomy I guess I thought this might be overkill. In order to get out of his high-pressure office I scheduled a follow-up. I just felt like he was way too anxious to get me into surgery. When I cancelled my follow-up with him I was questioned aggressively by the receptionist and received multiple follow-up phone calls trying to get me to come in and discuss “my surgery.” My gynecologist thought he might be a bit aggressive in what he had recommended and so she sent me to another urogynechologist in town who is highly regarded. I liked him much better and after examination he recommended the sacrocolpopexy as well. He said he did not think that a simple anterior ligament repair would hold because my ligaments are so weak. He said the sacrocolpopexy done robotically with hysterectomy is the state of the art procedure for my situation at this time. He was very willing to explain things and answer all of my questions and was not as pushy as the first urogynecologist I went to. He even said if I wanted to, I might come and work with his nurse on another pessary fitting to see if I had better luck. He even told me that he could see from my examination that my previous bleeding was likely coming from a small area at the base of my cervix that looked to have healed recently. He said it could have been caused by the previous pessary or just by rubbing on the tissue which was a bit atrophic. He also emphasized that using estrace and/or vitamin E gel or any type of cream or gel would add to my comfort level.

This was a couple of months ago and I decided just to take a break from going to doctors. I have been using the cream and it has helped. However, in the past couple of weeks it seems that the cystocele is causing me more discomfort. It is very difficult for me to empty my bladder and I have had a couple of nights where I am up and down all night trying to empty it and as soon as I get back in bed I feel like I have to go again. I am planning on making an appointment to go back in to the second urogynecologist and work with the nurse that does the pessary fittings. I had told him I was extremely afraid of the mesh and he said it is not the same mesh or the same surgery that you see on all of the class action lawsuit commercials. I just don’t know who to believe. I am so confused and feel that the situation is not getting better, in fact, it is really getting worse.

I would like to know if there are any doctors at the Mayo Clinic that perform sacrocolpopexy or who do any type surgery on cystoceles. I would be willing to come and consult one of them but I just don’t know where to begin. I would also like to hear from anyone who has had such surgery and how their recovery has been. I have some issues with my back as well and I feel like the prolapse is adding to a heavy feeling in my back and pelvic area. I apparently don’t have UTI which is surprising given that my bladder seldom empties. I just need to take the next step but don’t know what that is. Help? Direction? I really appreciate it.

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@letsgo I am so very sorry you are having these issues. I hope you can get some relief soon. I knew about the mesh erosion but it is not as common as it once was. I was not aware of the hernia possibility. I have had another type of hernia for years and luckily no pain from it. But this one sounds like it must be addressed. I really wish you the best.

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@pma58

@gailg That is me, I’m suppose to have the same surgery January 25 but I still haven’t decided if I’m going to or not. My biggest fear is having incontinence afterwards. They give you all the possible outcomes and this one scares me terribly. Right now I have a level 3 prolapse, bladder, bowel, uterus, but no incontinence other than an occasional dribble from coughing with a full bladder. I went through PT and retrained my bladder so my urge issues are pretty much gone. I’ve also figured out how much fiber I need daily to keep me regular with my rectocele. I’m 59 years old, in good health and am having minimal issues with the prolapse right now. If I do have the surgery I want it in January so it’s now or wait a year. I just keep going back and forth, I haven’t been able to decide. Anyone else have incotinence develop after surgery? If it happens I can do the sling but they said the urge may never go away. I don’t want more issues to develop from surgery.

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@gailg I really appreciate this conversation because I don’t have anyone I can talk this over with to help me make my decision. I don’t really know how long I’ve had the prolapse, as I think back I know my bowel began to fall at least ten years ago but the other pelvic organs involved may have been prolapsed for about three years with this past 1 1/2 years it’s been very apparent. I have read about the testing you refer to but have not had any nor are any planned prior to surgery. One of my surgeons is going to do a cystoscope but I don’t know when that’ll be done, either during or after surgery. I do know it’s meant to check how the bladder and urethra are working. My other surgeon did speak of surgical corrections if I do have leakage but did not put a number on it, I’ve read about 25% have some degree. It is interesting that you mentioned the prolapse can mask incontinence and has interfered with your ability to urinate because I’ve found that I can go longer than ever before needing to use the bathroom. When I get up in the morning after not going in the night I can let the dogs out and even feed them before heading to the bathroom. You would think I’d have a strong steady stream but I don’t, and depending on the angle of my torso I can change the stream from a mild one to more of a trickle, I’m sure it’s the prolapse and it has been in these last few months where it’s become quite noticeable which leaves me to deduce it’s falling even more. I feel very good about my two surgeons, they are reputable and have done many of these surgeries with great outcomes. I’m just not sure I’m bothered enough by the prolapse to have the surgery but if I don’t it might not go as well if I wait. I just want to be and feel normal again but the fear of incontinence is so strong, especially because my son is getting married next August .

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@pma58

@gailg That is me, I’m suppose to have the same surgery January 25 but I still haven’t decided if I’m going to or not. My biggest fear is having incontinence afterwards. They give you all the possible outcomes and this one scares me terribly. Right now I have a level 3 prolapse, bladder, bowel, uterus, but no incontinence other than an occasional dribble from coughing with a full bladder. I went through PT and retrained my bladder so my urge issues are pretty much gone. I’ve also figured out how much fiber I need daily to keep me regular with my rectocele. I’m 59 years old, in good health and am having minimal issues with the prolapse right now. If I do have the surgery I want it in January so it’s now or wait a year. I just keep going back and forth, I haven’t been able to decide. Anyone else have incotinence develop after surgery? If it happens I can do the sling but they said the urge may never go away. I don’t want more issues to develop from surgery.

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@pma58 I am not sure if you've had your surgery, but like @gailg was saying, they can test you prior to your surgery to see if your prolapse is masking any issues with your bladder. The testing isnt very fun…but, it is very informative and then you can make decisions with your doctor how to proceed. My prolapse was also not letting me void completely, so my bladder never fully emptied, but I did not have any issues with incontinence therefore did not need repair to that during my prolapse surgery. BUT! If you have the testing and it shows that you have issues with incontinence it can be repaired the same time as the prolapse surgery. 🙂

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Thinking of some of the members here who have talked about prolapse surgery and wondering how things are going …

@pma58 – did you have your prolapse surgery? Hoping your son's wedding went well in August.

@smot73 – it sounds like you had prolapse surgery as well. How did that go for you, as far as the recovery and your results now?

@letsgo – you mentioned you were going to have 2 more surgeries after your hysterectomy and mesh. Were these related to the cyst and the hernia you talked about?

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@lisalucier

Thinking of some of the members here who have talked about prolapse surgery and wondering how things are going …

@pma58 – did you have your prolapse surgery? Hoping your son's wedding went well in August.

@smot73 – it sounds like you had prolapse surgery as well. How did that go for you, as far as the recovery and your results now?

@letsgo – you mentioned you were going to have 2 more surgeries after your hysterectomy and mesh. Were these related to the cyst and the hernia you talked about?

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Hi! Yes! I did have prolapse repair and a partial hysterectomy performed at the same time in March of 2017. My life has completely changed. The upside, things are put back to where they are suppose to go, I am no longer in pain or feel as though I will hemorrhage to death once a month. The down side is, I cannot lift, push, or pull anything over 20 lbs for the rest of my life, (I am 45). That was a hard pill to swallow since I am very active, have horses, and am/was looking forward to lifting grandbabies one day. They will reach 20 lbs pretty fast. 🙁 But, I have come to terms with it, and have made changes to my daily life to accommodate. For example, I don't carry ALL the groceries in at once, I do smaller loads of laundry, and I have work hard to strengthened my arms because it is the lifting that uses your core that is restricted. The other negative: It took over a year for the feeling to come back in my nether regions and be able to enjoy sex with my husband again. No one had told me that could be a side effect, and that just about broke me. I would have rather of lost my right hand than to be broken in that way. But, he is a rock star husband and we are finally getting our groove and my feeling back! So, my advice, give your body time to repair. Its a pretty big surgery and it may take a minute for your body to find its way back to you. And be okay finding a new normal. It's not all bad having folks do the heavy lifting for you. 🙂

Liked by Lisa Lucier

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@baxtersmom

So sorry you have had these issues? When did you start having problems with this? I have not heard about the belly button problem but did this occur as a result of the laparoscopic surgery? I am unclear as to the order of things. You had bladder prolapse surgery with hysterectomy in May and then because of problems you had revision surgery? Is your doctor a urogynecologist? I am so sorry you are going through this. I am sure you have done so but have you gotten a second opinion as to what exactly you need at this point? I would be hesitant to let the same doctor operate on me again if I had these kinds of complications. If you are in a small town, have you considered going elsewhere for treatment? I had a similar long protracted outcome from an ankle surgery many years ago so I know how frustrating it can be to think you are fixing something and then have these other things happen. I will keep you in my thoughts and am still very curious about exactly what occurred.

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Hi Gail, will be so nice to know how you doing after you pelvic prolapse surgery. Did you had any problems with the mesh so far?
I am considering to have surgery too and traveling to US for that reason. Thanks

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@veronicat

Hi Gail, will be so nice to know how you doing after you pelvic prolapse surgery. Did you had any problems with the mesh so far?
I am considering to have surgery too and traveling to US for that reason. Thanks

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I have had bladder prolapse surgery in March 2018 (daVinci robotic sacropolpoxy – mesh). No problems, very happy!! @comcast.net

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@pizon

Good Morning, I am sorry to hear of your experience with the first dr….I had my repair surgery done in March and it was successful it was done without mesh and I did not have to have a hysterectomy. My uro. told me that my muscle spasms may return like a fire storm but would settle down…well they did and I am back in p/t…I am glad I had the surgery I was stage 2 and was very uncomfortable when I went into surgery I was pain free thanks to the p/t….now I have swelling du2 to the spasms it is better but I am still not myself the p/t dose help another thing that has happened since the surgery is I had what I thought was a uti and it turns out the dr. thinks I have ic (no testing has been done) acidy foods cause painful bladder issues so in a nut shell yes I am glad that my insides don’t feel like they are falling out and that I am not going thru the hell of one pessery fitting after another that only left me sore and sometimes infected…I did not get the sling I hear a lot of women had problems with that so I am lucky there but I am still in pain and have a dr. that will not prescribe valium (which helped with the spasms) he did order eruogics blu for the bladder pain but it upset my stomach so I am dealing only with the p/t …. I wish I could find another dr. but the practice I go to is the only one in my state and doesn’t allow you to see other dr.s… I wish you luck

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Hi, is it ok to ask who is the doctor who performed your surgery without mesh. I am looking for a good urogynecologist to do this surgery without mesh. I have hear that Micky Karan in LA is good. Anyone has experience with him?

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@veronicat

Hi, is it ok to ask who is the doctor who performed your surgery without mesh. I am looking for a good urogynecologist to do this surgery without mesh. I have hear that Micky Karan in LA is good. Anyone has experience with him?

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The doctor’s name is HUDSON, MEMORIAL HERMANN IN HOUSTON, TX. SHE IS VERY GOOD.

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@astabenno1990

The doctor’s name is HUDSON, MEMORIAL HERMANN IN HOUSTON, TX. SHE IS VERY GOOD.

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Thank you for replying. Is Dr Hudson repair you bladder prolapse without any mesh? Did she performed hysterectomy with that? Did she used your own tissue? Thanks

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Well Good Luck to you!!! I will keep you in my prayers….if you are in the state of Delaware and anyone else who may be reading this DO NOT USE Dr. Howard Goldstein with Christiana UroGYN …. he was a good sergeant however if you have a problem after your surgery he was not a very good follow up Dr. I saw him at least 8 times after my surgery and he wanted to keep putting me in the operating room for things I didn't have wrong with me (I would follow up with a specialist for what he said I had i.e. hernia and IC) when I finally went to an out of state UroGYN he told me at the first visit what was wrong with me and sent me to a pelvic pain specialist…. so in my option if I go to a dr. only one time for the same issue and he tells me with just one visit what is wrong the dr. that was treating me and saw me many times after the surgery can't tell me what is wrong he is just looking for a mortgage payment and not treating his patients as people!!!!

Liked by lioness

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@pizon

Good Morning, I am sorry to hear of your experience with the first dr….I had my repair surgery done in March and it was successful it was done without mesh and I did not have to have a hysterectomy. My uro. told me that my muscle spasms may return like a fire storm but would settle down…well they did and I am back in p/t…I am glad I had the surgery I was stage 2 and was very uncomfortable when I went into surgery I was pain free thanks to the p/t….now I have swelling du2 to the spasms it is better but I am still not myself the p/t dose help another thing that has happened since the surgery is I had what I thought was a uti and it turns out the dr. thinks I have ic (no testing has been done) acidy foods cause painful bladder issues so in a nut shell yes I am glad that my insides don’t feel like they are falling out and that I am not going thru the hell of one pessery fitting after another that only left me sore and sometimes infected…I did not get the sling I hear a lot of women had problems with that so I am lucky there but I am still in pain and have a dr. that will not prescribe valium (which helped with the spasms) he did order eruogics blu for the bladder pain but it upset my stomach so I am dealing only with the p/t …. I wish I could find another dr. but the practice I go to is the only one in my state and doesn’t allow you to see other dr.s… I wish you luck

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Dear Pizon, please share who was the doctor who did your pelvic repair without mesh, I am looking for a good surgeon who don’t use mesh for repair of pelvic prolapse. Thank you.

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@veronicat

Dear Pizon, please share who was the doctor who did your pelvic repair without mesh, I am looking for a good surgeon who don’t use mesh for repair of pelvic prolapse. Thank you.

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Good Morning I would highly recommend Dr. Marc Toglia he is at Riddle Memorial Hospital in Riddle Pa…he is who I now see for annual check ups…he removed 2 stiches that had eroded from the first surgery and wasn't happy the original Dr. (whom I would not recommend again if you are in the state of DE there is only one practice of uro/gyn's in the state I can't speak for the other Dr.'s in the practice but I would not recommend Dr. Howard Goldstein but the other dr.'s in the practice may be good but once you start to see one of the dr.'s within the practice you can't see another and they do not tell you that so if you start with one dr. and you don't like them you have to go out of state) choice in material used for the stiches he has removed many of that type of suture material that was used Good luck to you

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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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@pizon

Good Morning I would highly recommend Dr. Marc Toglia he is at Riddle Memorial Hospital in Riddle Pa…he is who I now see for annual check ups…he removed 2 stiches that had eroded from the first surgery and wasn't happy the original Dr. (whom I would not recommend again if you are in the state of DE there is only one practice of uro/gyn's in the state I can't speak for the other Dr.'s in the practice but I would not recommend Dr. Howard Goldstein but the other dr.'s in the practice may be good but once you start to see one of the dr.'s within the practice you can't see another and they do not tell you that so if you start with one dr. and you don't like them you have to go out of state) choice in material used for the stiches he has removed many of that type of suture material that was used Good luck to you

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

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