Want to discuss prolapse bladder or any kind of prolapse

Posted by Tanglefoot @tanglefoot, Aug 2, 2015

I am looking to discuss prolapse bladder or any kind of prolapse that other ladies have experienced as well. I would also like to comment on incontinence as well. There is a lot to talk about when it comes to prolapse bladder etc and it seems to be a silent epidemic among women. If there are others out there like me, lets talk about it and I have some solutions. I am surviving prolapse bladder without surgery and I have been living with it for over ten years. I wear a support garment that is light and easy weight and fits right under my existing underwear. Don’t know what you are doing or wearing, but I would like to hear from you. Thanks.
Tanglefoot

***NOTE FROM THE COMMUNITY DIRECTOR***

February, 2017.

Thanks to a Connect member, it was brought to our attention that @tanglefoot may have a vested interest in promoting the support garment “hideaway” mentioned in this discussion. Further investigation revealed that @tanglefoot is the designer and inventor of this product, and that she routinely posts on discussion forums using pseudonyms. Posting solicitations or advertisements of any kind violates Mayo Clinic Connect’s Terms of Use. We have decided to leave @tanglefoot‘s past messages as to not interrupt the flow of conversation, but she will no longer be able to post to the community.

Colleen Young

Community Director, Mayo Clinic Connect

Hello everyone I've been away from the group for a while I had bladder and uterus repair done 1 1/2 yrs ago and have had the sensation of sitting on a ball and hip paint that has gotten worse I finaly went to another uro/gyn out of state and now du2 scar tissue building up over the nerves wants to remove all stiches….is there anyone out there that has had this done before and what was your out come? No mesh was used…thank you in advance for your replys

REPLY
@pizon

Hello everyone I've been away from the group for a while I had bladder and uterus repair done 1 1/2 yrs ago and have had the sensation of sitting on a ball and hip paint that has gotten worse I finaly went to another uro/gyn out of state and now du2 scar tissue building up over the nerves wants to remove all stiches….is there anyone out there that has had this done before and what was your out come? No mesh was used…thank you in advance for your replys

Jump to this post

Hi, @pizon, great to hear from you. You'll see that I moved your post to this discussion so that some of the members who have discussed prolapse here could see your update and interact with you. Hoping they'll have some insights about this surgeon's proposal to remove all the stitches to address scar tissue building up over the nerves following your previous bladder and uterus repair, like @gailg, @sueblue @skd43usa @letsgo and @fromwoundedness. @hopeful33250 may also have some thoughts.

@pizon – what would be the next step the uro/gun is proposing for after removing all the stitches?

REPLY
@pizon

Hello everyone I've been away from the group for a while I had bladder and uterus repair done 1 1/2 yrs ago and have had the sensation of sitting on a ball and hip paint that has gotten worse I finaly went to another uro/gyn out of state and now du2 scar tissue building up over the nerves wants to remove all stiches….is there anyone out there that has had this done before and what was your out come? No mesh was used…thank you in advance for your replys

Jump to this post

I was told I would be 80 to 90% pain free…however my prolapse may return

Liked by Lisa Lucier

REPLY

Hello @pizon

I see that you have a big decision to make regarding the removal of stitches in order to be more pain free, but also the dilemma of having the prolapse return. That sounds like a difficult decision for anyone to make.

You said that you went to an out-of-state doctor. Was this to get a second opinion?

While I have not had surgery for bladder and/or uterine prolapse I have had surgeries that have caused scar tissue in other areas and I know how troublesome it can be.

Would you consider another opinion from a different doctor at this point?

Teresa

Liked by Lisa Lucier

REPLY

I lived with bladder prolapse for over 10 years and finally it got to a point where I was having bleeding and also it was causing me to not be able to urinate because it was dropped so low that the urine could not flow up-hill so to speak as it needed to to reach the urethra. Anyway, I got two opinions from two different urogynecologists and both recommended a procedure called sacrocolpopexy. It does involve mesh and I hesitated for a while because of that. But both told me that because my prolapse was stage 3 (it was stage 4 by the time I did the surgery), there was a very high probability that if the ligaments were just repaired, the prolapse would return. So after much deliberation, I ended up doing the surgery with the mesh. It was done with the daVinci robot and I had 4 little holes in my tummy none of which involved any stitches that had to be removed. I have no scar tissue that is visible and you can't see the spots unless you look very carefully. In order to do this surgery, it is most often that a hysterectomy is done along with it because basically the uterus is in the way. Again, I was hesitant but went ahead as I am postmenopausal and am 63 years old. I use Estrace Cream now a couple of times a week just for tissue health as recommended by my doctor but I did not have any ill effects from the hysterectomy at all. Bottom line is I wish that I had done this about 5 years prior to doing it. It would have saved meyself so much pain and agony. The bleeding from the pessary that I tried to wear and the nights when I could not urinate and laid awake in such discomfort could have all been avoided. As far as incontinence, I did not have this at all prior to surgery but my doctor did something called a urodynamics study in order to see if I would likely have incontinence once the prolapse was fixed. Apparently they can project based upon this study whether they need to make any adjustments during the surgery for you if you are likely to be incontinent after the repair. When you have a prolapse it can mask incontinence because the urine cannot flow. Therefore, after the repair your incontinence may become evident. So my doctor found with the study that I likely did have some incontinence. He corrected for it during the prolapse surgery and I have not had any problems. My friends say I have the bladder of a 19 year old now. I stayed in the hospital for two nights following my surgery. It is usually one night but I requested my doctor let me stay two since I live alone. I came home with a catheter in and it stayed for 7 days after surgery. On the morning it was to be removed, as you might guess I showed up early for my appointment. I don't know if this addressed the scar tissue issue very well but this is my experience. Please ask me any questions you like and I am glad to share what I can. If you are willing to travel out of town and want my doctor's contact information, I can certainly share that as well. I am nearly a year post surgery and have no issues whatsoever. I wish you well and am so sorry you are having such pain and difficulty. I am a chronic pain sufferer from some back issues and so I know how pain can really get you down. Best of luck to you.

Liked by Lisa Lucier

REPLY
@hopeful33250

Hello @pizon

I see that you have a big decision to make regarding the removal of stitches in order to be more pain free, but also the dilemma of having the prolapse return. That sounds like a difficult decision for anyone to make.

You said that you went to an out-of-state doctor. Was this to get a second opinion?

While I have not had surgery for bladder and/or uterine prolapse I have had surgeries that have caused scar tissue in other areas and I know how troublesome it can be.

Would you consider another opinion from a different doctor at this point?

Teresa

Jump to this post

Hello hopeful and thank you for your reply. Yes the out of state dr. was a second opinion..and I went to a specltz. for predundal nerve issue as well I am going to the out of state dr. for any corrective surgery the original dr. let me suffer with this for 1 1/2 yr now I have no confidence left in him our last visit he stated he wanted to remove 2 stiches (that have crystalized) and if that didn't help me we would remove my uterus

REPLY

Thank you so very much…I have found a new dr. that I will see the 24th…I saw him for a second opinion and he knew right away what was my problem…and sent me to a speclizt. for the nerve issue I will discuss with him how he will go about this thank you again

REPLY
@hopeful33250

Hello @pizon

I see that you have a big decision to make regarding the removal of stitches in order to be more pain free, but also the dilemma of having the prolapse return. That sounds like a difficult decision for anyone to make.

You said that you went to an out-of-state doctor. Was this to get a second opinion?

While I have not had surgery for bladder and/or uterine prolapse I have had surgeries that have caused scar tissue in other areas and I know how troublesome it can be.

Would you consider another opinion from a different doctor at this point?

Teresa

Jump to this post

@pizon Your decision sounds wise. I'm sure you are glad that you went out of state for another opinion!

Teresa

REPLY
@hopeful33250

Hello @pizon

I see that you have a big decision to make regarding the removal of stitches in order to be more pain free, but also the dilemma of having the prolapse return. That sounds like a difficult decision for anyone to make.

You said that you went to an out-of-state doctor. Was this to get a second opinion?

While I have not had surgery for bladder and/or uterine prolapse I have had surgeries that have caused scar tissue in other areas and I know how troublesome it can be.

Would you consider another opinion from a different doctor at this point?

Teresa

Jump to this post

yes I just wish I had done it sooner

REPLY
@tobiw

I'm interested in hearing any discussion of colpocleisis surgery.

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Hello @tobiw, and welcome to Connect. While I search more for members who have discussed this, I would like to share some resources that you may find worth looking at. Here is an article that was partially authored by a Mayo Clinic physician on total colpocleisis, https://link.springer.com/article/10.1007%2Fs00192-016-3034-4. Here is another discussion here on Connect focused on Prolapse that you may find worth your time reading through and participating where you feel comfortable, https://connect.mayoclinic.org/discussion/i-am-looking-to-discuss-prolapse-bladder-or-any-kind-of-prolapse/.

@tobiw, if you are comfortable sharing, has colpocleisis surgery been discussed with you as an option with your medical provider?

REPLY

Hi, @pizon — you'd mentioned you had a doctor appointment on the 24th and would discuss with him how the scar tissue building up over the nerves after your bladder and uterus repair would be addressed, if I understood your post correctly. How did that go?

REPLY
@lisalucier

Hi, @pizon — you'd mentioned you had a doctor appointment on the 24th and would discuss with him how the scar tissue building up over the nerves after your bladder and uterus repair would be addressed, if I understood your post correctly. How did that go?

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Hello and Thank you…I did see the dr. on the 24th and he would like to remove only the stiches in the back that he feels are closest to and effecting the nerves so this week he is going to talk with the speclz. in MD and come up with a plan also he will talk with the head Dr. at the practice in De that did the surgery to see if he (the head Dr.) will do the surgery so that I do not have to go out of state he knows how I feel about the dr. that did the original surgery (this practice dose not allow you to see other dr.'s within the same practice) so he seems to know the head dr. they must play golf together lol…..I am glad he is being this throe but I really want this over with i'm in such pain and when i'm not i'm so uncomfortable I just want my life back….thank you again

REPLY
@lisalucier

Hi, @pizon — you'd mentioned you had a doctor appointment on the 24th and would discuss with him how the scar tissue building up over the nerves after your bladder and uterus repair would be addressed, if I understood your post correctly. How did that go?

Jump to this post

@pizon

Just a thought: I see that you wrote "this practice does not allow you to see other dr.'s within the same practice." While this is true on paper (their standard practice), I have found that it can usually be circumvented. I have explained to the department head of two large hospital departments the reason why I was uncomfortable sticking with the same doctor and in both instances they allowed me to change or at least add the doctor of my choice.

Please remember that you are a "customer" of the medical practice and in spite of their guidelines (and they are just guidelines) they want to keep you as a patient. Often, I have described an anxiety I had with a previous doctor because I did not feel that he heard me or that I did not feel I got the appropriate treatment and that I would not have another procedure with that doctor because of my anxiety and they found a way to circumvent their rules of staying with the original doctor.

Asking for exceptions to their rules is always appropriate. If it helps, write out your reasons before making the phone call and/or send a letter if you feel that is a better way to communicate more effectively.

Will you let us know when you have this procedure and how it comes out?

REPLY
@hopeful33250

@pizon

Just a thought: I see that you wrote "this practice does not allow you to see other dr.'s within the same practice." While this is true on paper (their standard practice), I have found that it can usually be circumvented. I have explained to the department head of two large hospital departments the reason why I was uncomfortable sticking with the same doctor and in both instances they allowed me to change or at least add the doctor of my choice.

Please remember that you are a "customer" of the medical practice and in spite of their guidelines (and they are just guidelines) they want to keep you as a patient. Often, I have described an anxiety I had with a previous doctor because I did not feel that he heard me or that I did not feel I got the appropriate treatment and that I would not have another procedure with that doctor because of my anxiety and they found a way to circumvent their rules of staying with the original doctor.

Asking for exceptions to their rules is always appropriate. If it helps, write out your reasons before making the phone call and/or send a letter if you feel that is a better way to communicate more effectively.

Will you let us know when you have this procedure and how it comes out?

Jump to this post

Hello and thank you for the advise I have asked in the past to see the sr. partner in the practice and was declined however when I saw the out of state dr. on Friday he offered to speak to this Dr. (they are in the same boys club if you will)…the out of state dr. will do the surgery however he would like to see the dr. or the sr. dr. of the practice complete the surgery du2 the style in which each dr. dose the tieing of the stiches and he has never worked on any other of his patients so I am awaiting a phone call this week ( I will call Friday if I don't hear from him….I can't wait much longer

Liked by Lisa Lucier

REPLY
@baxtersmom

I lived with bladder prolapse for over 10 years and finally it got to a point where I was having bleeding and also it was causing me to not be able to urinate because it was dropped so low that the urine could not flow up-hill so to speak as it needed to to reach the urethra. Anyway, I got two opinions from two different urogynecologists and both recommended a procedure called sacrocolpopexy. It does involve mesh and I hesitated for a while because of that. But both told me that because my prolapse was stage 3 (it was stage 4 by the time I did the surgery), there was a very high probability that if the ligaments were just repaired, the prolapse would return. So after much deliberation, I ended up doing the surgery with the mesh. It was done with the daVinci robot and I had 4 little holes in my tummy none of which involved any stitches that had to be removed. I have no scar tissue that is visible and you can't see the spots unless you look very carefully. In order to do this surgery, it is most often that a hysterectomy is done along with it because basically the uterus is in the way. Again, I was hesitant but went ahead as I am postmenopausal and am 63 years old. I use Estrace Cream now a couple of times a week just for tissue health as recommended by my doctor but I did not have any ill effects from the hysterectomy at all. Bottom line is I wish that I had done this about 5 years prior to doing it. It would have saved meyself so much pain and agony. The bleeding from the pessary that I tried to wear and the nights when I could not urinate and laid awake in such discomfort could have all been avoided. As far as incontinence, I did not have this at all prior to surgery but my doctor did something called a urodynamics study in order to see if I would likely have incontinence once the prolapse was fixed. Apparently they can project based upon this study whether they need to make any adjustments during the surgery for you if you are likely to be incontinent after the repair. When you have a prolapse it can mask incontinence because the urine cannot flow. Therefore, after the repair your incontinence may become evident. So my doctor found with the study that I likely did have some incontinence. He corrected for it during the prolapse surgery and I have not had any problems. My friends say I have the bladder of a 19 year old now. I stayed in the hospital for two nights following my surgery. It is usually one night but I requested my doctor let me stay two since I live alone. I came home with a catheter in and it stayed for 7 days after surgery. On the morning it was to be removed, as you might guess I showed up early for my appointment. I don't know if this addressed the scar tissue issue very well but this is my experience. Please ask me any questions you like and I am glad to share what I can. If you are willing to travel out of town and want my doctor's contact information, I can certainly share that as well. I am nearly a year post surgery and have no issues whatsoever. I wish you well and am so sorry you are having such pain and difficulty. I am a chronic pain sufferer from some back issues and so I know how pain can really get you down. Best of luck to you.

Jump to this post

I have the same surgery that you had scheduled for October 18th. Robotic Sacrocolpopexy and robotic hysterectomy. They will do a cystoscopy too to see if I would be incontinent after surgery, and would fix this during surgery if this be the case. I am fine with having the operation, my question is after my 8 week recuperation period of lifting nothing more than 15 lbs, no gym and no sex, what will my exercise limitations be. The doctor (uro-gyn) said for the rest of my life I should not pick up anything heavy….but what does that mean? 15 lbs? 20 or 25? Also, I always did zumba ( I am 65 years old) and now I am afraid to go back to it. There is jumping at times, etc. What type of exercise are you doing to stay fit? Any advice would be appreciated.

Liked by Lisa Lucier

REPLY
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