Having problems post Bladder Prolapse Surgery: What helps?

Posted by brr @brr, Feb 7 3:10pm

I had a Bladder Prolapse surgery with a sacrocolplexy and later an Altis Sling placed under the urethra. Both have given disastrous results-incontinence, pain, total right side pain, abdominal pain, leg pain. Has anyone had these kinds of problems? Were you able to diagnose possible nerve damage? How did you get help?

@brr I am sorry that your surgeries have been so unsuccessful. I know people who have loved the sling. I would have had it myself if it was indicated for my type of incontinence but it is not. I know nothing about sacrocolplexy.
What does your doctor have to say about your pain? If you don't get satisfaction from your current doctor I hope you will go to a different one, one who is at a different medical center, preferably at a teaching hospital. They see the most so often know the most. Doctors affiliated with the same facility will rarely go against another doctor.
JK

Liked by gardeningjunkie

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Hi @brr, welcome to Mayo Clinic Connect. In addition to @contentandwell, I'd like to introduce you to @baxtersmom @pdove @misssassy @pizon @gardeningjunkie @hotfooted and others who have shared their experiences, successes and challenges in these discussion:

– Recurrent bladder infections after prolapse surgery: https://connect.mayoclinic.org/discussion/recurrent-bladder-infections-after-prolapse-surgery/
– Want to discuss prolapse bladder or any kind of prolapse: https://connect.mayoclinic.org/discussion/i-am-looking-to-discuss-prolapse-bladder-or-any-kind-of-prolapse/
– Bladder improvement https://connect.mayoclinic.org/discussion/prolapsed-bladder-improvement/ 

Like JK, I'd like to know what your doctor has said about dealing with the unwanted effects of surgery? Have you been given any therapy or exercises to help?

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@contentandwell

@brr I am sorry that your surgeries have been so unsuccessful. I know people who have loved the sling. I would have had it myself if it was indicated for my type of incontinence but it is not. I know nothing about sacrocolplexy.
What does your doctor have to say about your pain? If you don't get satisfaction from your current doctor I hope you will go to a different one, one who is at a different medical center, preferably at a teaching hospital. They see the most so often know the most. Doctors affiliated with the same facility will rarely go against another doctor.
JK

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The doctors who have done the surgery basically have no answers; I have been to 3 other doctors for opinions -two urogynecologists and one gynecologist. All have opinions but no definitive answers. I have tried physical therapy on two different occasions with no success. Thank you for responding.

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@colleenyoung

Hi @brr, welcome to Mayo Clinic Connect. In addition to @contentandwell, I'd like to introduce you to @baxtersmom @pdove @misssassy @pizon @gardeningjunkie @hotfooted and others who have shared their experiences, successes and challenges in these discussion:

– Recurrent bladder infections after prolapse surgery: https://connect.mayoclinic.org/discussion/recurrent-bladder-infections-after-prolapse-surgery/
– Want to discuss prolapse bladder or any kind of prolapse: https://connect.mayoclinic.org/discussion/i-am-looking-to-discuss-prolapse-bladder-or-any-kind-of-prolapse/
– Bladder improvement https://connect.mayoclinic.org/discussion/prolapsed-bladder-improvement/ 

Like JK, I'd like to know what your doctor has said about dealing with the unwanted effects of surgery? Have you been given any therapy or exercises to help?

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Thank you for responding. Yes, I have sought out other opinions and have tried therapies, all with no help. I will take a look at the links you sent.

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@luftmensh1

I'm using a pessary, which is helpful, but it can cause bleeding. Surgery is recommended. However, FDA banned the use of a surgical mesh to lift prolapsed organs because many women got infections and some even died. There are different types of surgery. Before the ban, several neighbors had surgery and they seem to be okay. Has anyone out there had surgery for pelvic organ prolapse? If so, what has been your experience?.

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@luftmensh1
I have posted quite a bit about my experience with having my prolapse surgery and if you do a search for my posts by my user name (@baxtersmom) you should be able to find them. But I had the mesh which I was afraid of at first but my doctor showed me the old mesh that you hear about on TV with all the lawsuits vs. the new mesh they use now. The mesh they use now is not the same and the mesh that they had all the lawsuits with is no longer used. The mesh is necessary in a lot of cases because it prevents you from having to go back in a few years and have the surgery all over again. Just stitching up the ligaments usually does not hold and so using the mesh is a better long term solution. My surgery was called a sacrocolpopexy and was recommended by two different urogyneclogists. You want to go to someone who does these surgeries all the time and not someone who only does them every so often. Mine was
done laproscopically with the DaVinci robot and I really have had no issues since having the surgery in Oct. 2017. I had been trying the pessary for a long time and dealing with bleeding and rubbing and never could get it out to clean it (I was always going to the doctor for her to take it out). It was just not sustainable. Please try to do a search from some of the posts here (mine and others) and I think you will see that there is not a lot to be worried about. I said after the surgery that I wished I had done it a couple of years earlier as my prolapse was a level 4 and very hard to live with. It only gets worse with time and I tried doing the exercises but I think mine was so far along by that point that it did no good. After you read more of my posts, let me know if you have any questions. I was surprised to find how many women deal with this even though it isn't talked about much. Best to you.

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@baxtersmom

@luftmensh1
I have posted quite a bit about my experience with having my prolapse surgery and if you do a search for my posts by my user name (@baxtersmom) you should be able to find them. But I had the mesh which I was afraid of at first but my doctor showed me the old mesh that you hear about on TV with all the lawsuits vs. the new mesh they use now. The mesh they use now is not the same and the mesh that they had all the lawsuits with is no longer used. The mesh is necessary in a lot of cases because it prevents you from having to go back in a few years and have the surgery all over again. Just stitching up the ligaments usually does not hold and so using the mesh is a better long term solution. My surgery was called a sacrocolpopexy and was recommended by two different urogyneclogists. You want to go to someone who does these surgeries all the time and not someone who only does them every so often. Mine was
done laproscopically with the DaVinci robot and I really have had no issues since having the surgery in Oct. 2017. I had been trying the pessary for a long time and dealing with bleeding and rubbing and never could get it out to clean it (I was always going to the doctor for her to take it out). It was just not sustainable. Please try to do a search from some of the posts here (mine and others) and I think you will see that there is not a lot to be worried about. I said after the surgery that I wished I had done it a couple of years earlier as my prolapse was a level 4 and very hard to live with. It only gets worse with time and I tried doing the exercises but I think mine was so far along by that point that it did no good. After you read more of my posts, let me know if you have any questions. I was surprised to find how many women deal with this even though it isn't talked about much. Best to you.

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Gail, I appreciate your taking the time to write. The pessary has worked for me, and I am able to insert and remove it, which I was told to do twice a week and use an estrogen cream while the pessary is out overnight. I have had problems with irritation and bleeding, and it was suggested that I take vacations from using the pessary, which I did for a week recently. This was very uncomfortable. When I put it back in, it kept coming out whenever I tried to go for a walk. Finally, I tried a different technique: pushing the prolapsed organ up all the way while lying down just before inserting the pessary, and this worked. I am 82, and I may not always have the dexterity to insert and remove the pessary. A urogynecologist told me that the bulge is actually the vaginal wall, which reassured me that I wasn't in danger of having my uterus or bladder fall out of my body. Sacrocolpopexy was recommended. It sounded like it was closing the vaginal opening at the top and can be done partially (if one is sexually active, but my husband is significantly disabled) or fully with a hysterectomy, which would be called sacrohysteropexy. The latter has a higher rate of success, apparently. Because of bleeding, I had to have an ultrasound, which was followed by a hysteroscopy in Jan. 2020, which showed I did not have cancer of the uterus. At the time of my hysteroscopy, they were just beginning to ask people at the hospital whether they had recently traveled to China. Then the pandemic arrived, and I have not been going anywhere, except for a few medical appointments and to get the oil changed on my car. I am not anxious to have any surgery while the pandemic is here and is so virulent. I am able to go for walks, which I really enjoy. It's late now and my husband is calling for help, so I have to sign off. Thanks again.

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I'm using a pessary, which is helpful, but it can cause bleeding. Surgery is recommended. However, FDA banned the use of a surgical mesh to lift prolapsed organs because many women got infections and some even died. There are different types of surgery. Before the ban, several neighbors had surgery and they seem to be okay. Has anyone out there had surgery for pelvic organ prolapse? If so, what has been your experience?.

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@luftmensh1

I'm using a pessary, which is helpful, but it can cause bleeding. Surgery is recommended. However, FDA banned the use of a surgical mesh to lift prolapsed organs because many women got infections and some even died. There are different types of surgery. Before the ban, several neighbors had surgery and they seem to be okay. Has anyone out there had surgery for pelvic organ prolapse? If so, what has been your experience?.

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@luftmensh1 There are several surgical options that treat a prolapsed bladder. You are looking for information and to connect with women that have had these types of surgeries. It important for you to choose the best and safest option. Did I get that right?

It sounds like the short-term use of a pessary has worked but there are side effects. You are now considering surgery sooner rather than later.

You will notice that I moved your question to an existing discussion on Bladder Prolapse Surgery in the Kidney and Bladder group. Members like @contentandwell @baxtersmom @gardeningjunkie @hotfooted have experience with this topic and may be a good resource for you. I also encourage you to scroll back through the comments to find previously shared suggestions.

You mentioned that surgical mesh is now banned, what kinds of other surgeries have you looked into?

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@luftmensh1 and @erikas
For @luftmensh1 Glad you are able to take walks as I have some issues with my back making that difficult sometimes. But always good to keep moving. I am 66 and so was in my 60s when I had my surgery. The sacrocolpopexy does not close you up but they usually do a hysterectomy along with it mainly because of the fact that it makes the operation take less time because certain things are no longer in the way of where they need to work (that is how it was explained to me). There is another procedure that closes up the vagina which is a much simpler surgery as I understand it and is often offered to older women who are no longer and do not plan to ever be sexually active. I believe this surgery is called vaginal obliteration. There are many types of pelvic organ prolapse (yours may be the vaginal wall that is protruding). Mine was the bladder. Sometimes the rectum is what falls and this is called a rectocele. When it is the bladder it is called a cystocele.

There are many resources online with a lot of information about the different types of pelvic organ prolapse. All of these are really hernias because the ligaments that hold the organ in place have weakened and thus the organ will fall. As you say, it won't fall out but can be very annoying and inconvenient. For me, since mine was the bladder, it got to the point where I was having trouble urinating because the bladder was so low that the urine could not come out (simply put it would have had to flow uphill to come out and that defies gravity). After going to the doctor several times to have him put in a catheter so I could urinate, I became convinced that the surgery was really the only option. Some doctors will try to stitch the ligaments back so they can hold the organ in place again. But many times these ligaments will tear again and the patient will end up having to have a second surgery because the ligaments did not hold. That is why my doctor recommended the mesh procedure. But truly, the mesh he showed me looked more like nylon hosiery than it did anything metallic. The older mesh looked more metallic and that is the mesh that caused all the lawsuits. That is why I say that if your doctor is recommending mesh at all then ask him to show you some of it. I had two doctors tell me I needed the exact same procedure and one of the doctors was not open to my questions at all. The other one welcomed them and so that is who I went with for my surgery. I still go to him once a year and he also has me using an estrogen cream 3 times a week in order to keep the tissue healthy. Sounds like your doctor is on the same page there.

As far as being in the hospital now with covid-19 going on, I actually had an upper endoscopy a couple of months ago and back in June, I was in the hospital for two days for some tests. I was very impressed with all the things they were doing to keep everything clean and combat the virus. It was however, nerve racking to have to worry about getting the virus along with all the other worries you have when you are in the hospital or having a procedure. But if you decide to have a surgery, I am here to tell you that it can be done but ask a lot of questions beforehand so you can be convinced that the facility is taking the virus seriously.

Please continue to post your questions. I am a mentor for women's health but I can answer your posts on any of the topical chats on Connect. Just remember we are here to help.

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@luftmensh1

I'm using a pessary, which is helpful, but it can cause bleeding. Surgery is recommended. However, FDA banned the use of a surgical mesh to lift prolapsed organs because many women got infections and some even died. There are different types of surgery. Before the ban, several neighbors had surgery and they seem to be okay. Has anyone out there had surgery for pelvic organ prolapse? If so, what has been your experience?.

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I had the "new mesh" surgery 5 years ago at age 67. The previous mesh did have lawsuits from side effects. I have Allergic Contact Dermatitis, ACD which is an allergic form of eczema and had zero reaction to this mess. No more bladder drooping into vaginal opening. I also had a sling placed which lifts up the urethra. The mess lifted the bladder, the sling straightens the urethra so full urination is possible. No more needing to stop at every store to use the bathroom during a shopping trip because I can empty it fully before i leave home and wait till I return hours later to use my own toilet.
Do not expect a basic gynecologists' to perform this surgery. My surgeon only does this surgery. It was worth the 2 1/2 hour drive each way to see a female repair specialist. My surgeon was in Las Vegas NV if interested I will give you his name.

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I live in Silver Spring, MD., so Las Vegas is not realistic. At present, I am managing with a pessary. It's a bit messy, but I have become pretty adept at removing it, using estrogen cream overnight, and reinserting it twice a week. There is a discharge with it, and it can be irritating and even cause bleeding at times, especially when I'm physically active. So I need to take a vacation from the pessary occasionally. No bleeding without the pessary, but there is a bulge, which I was recently told was the vaginal wall. (I thought it was the bladder or uterus, which I've been told are both prolapsed.) I've seen several urogynecologists in this area, and there's a special group at Hopkins Bayview Medical Center in Baltimore headed by a woman whom I might consult. I'm not anxious to have surgery during the pandemic.

My husband and I are giving a talk together at a Zoom meeting this coming week. So I may not be able to participate in this discussion again until that's over. However, I would like to know the name of the surgery you had, if you can supply it. I'm wondering what the overall success rate is and what the side effects might be. It sounds as though you had a good outcome. I am 82, which would be a little more challenging.

Thank you so much for taking the time to share your experience.

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My surgeon was Christian Quintero MD, FACOG who specializes in urogynecology. It's been about 5 years so looked up on web to see current information. It appears he is now practicing in Hollywood, Florida. I haven't had the need for follow up and was unaware he had moved.
All contact information is on the web. Yes your age could be an issue. I had made a mistake and had an obstetrician/gynecologist perform a hysterectomy when I was about 65. He should had stuck to delivering babies. I needed this hysterectomy because I had prolapsed making it too complicated for him. One day my vagina dropped into my vaginal opening and hung out about an inch. Turns out I had mild colon prolapse also. This doctor tried to tie up the colon and bladder while he removed the uterus and ovaries. The colon held, but the bladder didn't because the tissue it was tied to failed. All our skin an membranes thin as we age. That's why I needed the mesh. The mesh is placed on the inner supportive tissue between the bladder and your skin will grow into the mesh for support. Also the tube draining the bladder was crooked, thus the sling that held it up to straighten in.
I would recommend contacting his office and setting up a phone consultation. You could have your records sent and he could make a recommendation.

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I mentioned that a certain type of surgical mesh has been banned by the FDA. So far, the only type of surgery I've had recommended is the sacrocolpopexy (if I got the spelling right).

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@gardeningjunkie

My surgeon was Christian Quintero MD, FACOG who specializes in urogynecology. It's been about 5 years so looked up on web to see current information. It appears he is now practicing in Hollywood, Florida. I haven't had the need for follow up and was unaware he had moved.
All contact information is on the web. Yes your age could be an issue. I had made a mistake and had an obstetrician/gynecologist perform a hysterectomy when I was about 65. He should had stuck to delivering babies. I needed this hysterectomy because I had prolapsed making it too complicated for him. One day my vagina dropped into my vaginal opening and hung out about an inch. Turns out I had mild colon prolapse also. This doctor tried to tie up the colon and bladder while he removed the uterus and ovaries. The colon held, but the bladder didn't because the tissue it was tied to failed. All our skin an membranes thin as we age. That's why I needed the mesh. The mesh is placed on the inner supportive tissue between the bladder and your skin will grow into the mesh for support. Also the tube draining the bladder was crooked, thus the sling that held it up to straighten in.
I would recommend contacting his office and setting up a phone consultation. You could have your records sent and he could make a recommendation.

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Thank you for the information.

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@luftmensh1

I mentioned that a certain type of surgical mesh has been banned by the FDA. So far, the only type of surgery I've had recommended is the sacrocolpopexy (if I got the spelling right).

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It appears we are talking about the same procedure. A mesh procedure. I got the "new mesh" over 5 years ago. I didn't remember the medical term of my procedure. I Googled sacrocolpopexy- a surgical procedure to treat pelvic organ prolapse due to weakening of the normal support by attaching graft material (mesh) between the vagina and sacrum. What you need to do if you are a candidate is get the specific name of your mesh (the bad mesh is no longer sold). Google that specific name for lawsuits and negative side effects and make your decision. Personally I have learned to always double check what ever is going into or on my body as I have severe allergies even if a doctor recommends it. That's why I backed out of knee replacement surgery. I have 5 metal allergies and the surgeon was scheduled to put in a ceramic coated implant and I Googled it and discovered it had a class action lawsuit against it for failure. The surgeon hadn't even warned me of this lawsuit that had been going on for a year. I'd rather live with my limitations than have them cut out my knee, replace it with an implant I slowly reject and live with pain and inflammation even when I am not using it. If it had to be removed I would then be left with no knee and in a wheel chair. You are living with the side effects of the pessary, and my results with mesh were outstanding, but it is a risk and there can be consequences.

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