Mayo Clinic Connect
scheduling sacrocolpopexy and cystocele repair…more than a little scared
May 2017. Robotic hysterectomy, bladder mesh, vaginal mesh n vaginal repair. I understood about the material but found I am a slow healer. I only wish that Mayo would have a patient developed brochure that explains some of the issues that may be encountered. Like the 7th day crash…feeling hungry but nauesish…emotional…hot n cold … sutures inside of the navel n the navel being irritated. Sutures that would or may be very slow in dissolving. It’s been nearly three months and I still have internal vaginal sutures that will eventually dissolve. But still and finally what underwear do you wear because every scar is at a different level. They should find a pair that’s just right (brief jockey cotton that doesn’t have a waist band finally after many tries) and send you home with a pair or recommended pair. With this type of patient brochure it would probably save them a number of nurse and doctor phone calls. Just saying sometimes patients who have been there and done that could be very helpful.
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Good to hear from you. I was asking fellow member @letsgo about her recovery from surgery. To see the full discussion on Connect, please click VIEW & REPLY.
ZarGul, have you considered surgery?
Waiting your response.
Hi, @zargul. Please use the contact information on this form to request an appointment at Mayo Clinic http://mayocl.in/1mtmR63. They will review your medical records and history, and discuss with you treatment options.
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.
Sorry for the late reply. I actually must have missed your post. The symptoms that seem to be getting worse are that the prolapse is more pronounced (it was diagnosed as stage 2 or 3 and now they are saying 4). I think it is beginning to affect bowel movements a bit and I had a couple of nights a few weeks back where I was up all night feeling like I needed to urinate but just could not. I ended up going back to the second Urogynecologist that I went to and liked. He used a catheter and I immediately felt better. He really thinks I need to have a sacrocolcopexy with hysterectomy but he would do it with the robot laproscopically. He says the mesh is different from the original mesh that was used early on.. I am going in next week to do urodynamic testing which would be a part of the pre-op procedure but have not scheduled the surgery yet. He said that I can decide whether I want to keep my ovaries or not if I decide on surgery. Oddly enough, yesterday, somewhat out of the blue I started having an aching feeling in my pelvic region feeling like a menstrual cramp. When I got up I immediately realized the prolapse was very pronounced again (it had not been that bad since he used the catheter a couple of weeks ago). I was also bleeding–I had a lot of bleeding earlier this year and had a D and C and everything was okay. The urogynechologist told me that he had seen a small ulcerated area on the tip of my cervix where he thought that my bleeding had probably come from. He said to be diligent about using estrogen cream or any type of lubricant in order to make sure I do not get overly dry. I had slacked off a little bit and am thinking maybe that is why the bleeding started again. I am going to call him today to see what he says.
I will look at the doctors you mention and see about their profiles. I have done a lot of research and it seems that lot of the articles with a “mesh is bad” slant are older. The sacrocolpopexy robotically seems to be state of the art. I am just scared but know that I have to do something as this is very uncomfortable. I also have some back problems that causes pain in my legs. The more pronounced the prolapse, the worse this pain is as I think the ligaments stretching really do put a lot of pressure on my back causing a heaviness and exacerbating the.pain in my legs and back. Funny thing. I am extremely healthy in all the areas that most people my age have problems (heart, lungs, diabetes, etc–knock on wood). But I think I do need to make a decision about the prolapse as I have had it for many, many years and in the last year with the bleeding, the extra pain, and affecting other bodily functions, it is time to deal with it.
Thanks again for the information on the doctors.
Hi, @gailg. Thanks for updating us. I am sorry your symptoms seem to be getting worse. Sounds like you are doing a very thorough job of researching your own situation and getting well-educated.
Seems appropriate, in light of the bleeding, that you mentioned talking to your doctor today.
Please do keep us posted.
hello every one I am 7 months out of bladder lift surgery and am still feeling like I am sitting on a ball very uncomfortable my urogyn and p/t say it is all pelvic floor muscle spasms also went to see the dr. yesterday awaiting urinalysis culture(think I have a uti) I was feeling pretty good till a month ago when I thought I had a uti but the cultre came back negitave 2 weeks later ended up in the er and was given Keflex for a uti my dr thinks I need another type of antibotic I’ve had a c/t and all looks well I just don’t feel well and also now pain is waking me at night just wondering if anyone else that has had this type of surgery is/was feeling anything like this?
Hello Pizon. Wow I am sorry about your discomfort, and what appears to be infection. Certainly a resisliant UTI would explain your pain. It may also cause the sensation of sitting on a phantom ball, secondary to inflamation. However, pelvic floor spasms can manifest very differently from individual to individual. Sometimes the actual pelvic floor relaxation process (synchronization of the pelvic floor muscles during voiding) can be disrupted by these spasms and cause urine retention…… Incomplete emptying. This can lead to chronic infection of the bladder and/or kidneys. Obviously since you do have an infection, this question should be raised to your physician and therapy team. If the infection becomes long term, things get dicey. A urinary tract infection makes people feel really crappy long before they are diagnosed. If the cause of your symptoms and the trigger for the UTI’s are the pelvic floor spasms, the spasms need to be treated. Good luck with this and with getting answers. I hope you feel better soon!
Liked by Lisa Lucier
I was looking for someone who had said they were having prolapse surgery in January and can’t seem to find the post. I had a sacrocolpopexy along with hysterectomy and a few other nips and tucks back on Oct. 18th. It was done mostly with a laparoscope and robotically along with surgical mesh, and It went great and has healed wonderfully. I will briefly go over my experience below.
I stayed in the hospital 2 nights rather than the one they said is usual, as I requested since I live alone. The day of the surgery I just went to sleep that night and slept really well. The following morning they put me back on a regular diet and breakfast tasted wonderful since I had been on liquids since a full day before the surgery. That same morning they pulled out all the cotton/packing material that had been left inside and it felt really quite strange but was not painful. I had no pain other than little tinges largely due to gas. They blow your tummy up during the surgery and it takes quite a while for that to pass. One of the 5 little holes they put in your tummy is for a drain and when they took the tube out of there before I left the hospital, that was probably the most pain I felt but it was over quickly. I came home from the hospital with a catheter and had to keep it for 7 days until I had my first post-op appointment. The two hurdles that they tell you about are your first bowel movement which came about 4 days after surgery and then when they take the catheter out (they do some testing to see if you can completely void, etc.). Both went fine although I did have a bit of persistent loose stool on and off for a couple of weeks following surgery. They say it is more common to have constipation from all the pain meds. So most people don’t have this issue.
Everything has healed really well and I have no leakage or inability to fully void. I had a very big (level 4) prolapse and so the surgery has made a wonderful difference. There were no stitches on the little laparoscope holes (just some surgical glue) and they are pretty much healed with just a few little dots on my tummy left. There were dissolving stitches between the vagina and the rectal area and these have pretty much fully gone away now too. There are some innervation issues that affect the rectal area and this just takes a while for the nerves to regenerate but once they do you won’t have any problems. This just causes some temporary lack of feeling in that area that may affect bowel feeling just a bit. But it all has gone away now.
I would say to anyone who is having this surgery that you should ask to stay in the hospital 2-3 nights if you live alone. If you are coming home with a catheter, make sure they spend time with you before you leave the hospital explaining how to care for the catheter, empty it, etc. Ask questions because you may still be a little foggy from your anesthesia and they throw a lot at you before you leave the hospital. I was so afraid to do this and should have done it years ago but was mainly afraid of the mesh. But have had absolutely no problems at all. I took a lot of time finding the right doctor and ended up selected a Urogynecologist named Tomas Antonini here in Austin, Texas. He was so caring and so available afterwards that I could not have asked for a better doctor. The reason he chose to use the mesh on me is because the ligaments holding my bladder were so stretched that he did not think doing it without the mesh would hold for the long term. I am 63 and I don’t want to have to do this again if at all possible so this seemed the best alternative for me. Be aware thaat there are many approaches and the best approach for you may be different. But I do think that finding a Urogynecologist who has dealt with a lot of these cases is the key to getting the right surgery done the right way.
If you do find that you need a similar surgery and you have questions, please post them. And don’t be afraid of it. It really was not bad at all and I am so very glad I did it.
Liked by Colleen Young, Connect Director, Lisa Lucier
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.
@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.
I had surgery May 2017. Hysterectomy bladder n vaginal mesh by laparoscopic robotic surgery. I complained about my belly button and as of late Nov 2017 they’ve found annincisional hernia. This followed a bladder mesh revision surgery in early Nov 2017. The pain from this hernia is awful. Best thing I can say to anyone about any of it is…whatever you have to do, use whateverNEVER ever become constipated. If it hadn’t been for this pain they wouldn’t have found the kidney complex cyst. Now I’m waiting for 2 more surgeries. I don’t like the recovery period at all. It’s been a long horrible road since May 2017!
Never EVER let yourself get constipated. No matter how long after surgery.
Thanks for helping me find you. I couldn’t find your previous post. I know exactly how you feel. I was afraid of that as well since I had no issues with that either prior to surgery. My doctor explained to me that the prolapse can mask the incontinence. But what finally happened was I would get to the point where I couldn’t pee because of the prolapse coming down so far. Then I would have to go in and get drained with a catheter. My doctor was so good with the catheter that you could not even feel it. I figured anyone who could do that was the guy to do my surgery. They did urodynamics testing within a couple of weeks prior to the surgery and found that I likely did not have incontinence primarily because of the prolapse. They can actually predict whether you likely would have incontinence once the prolapse is corrected. If you likely would be incontinent then they can correct for that as a part of the surgery. Of course, it is always an estimation as to how much to correct for that without having the opposite problem, but I just knew I could not continue waking up at night and not being able to pee. I had my prolapse for at least 10 years before doing the surgery. My doctor explained that if I was incontinent after the surgery that he could correct it but that he rarely had to do that because he can tell what he needs to do based on the urodynamics. Did your doctor mention doing any testing prior to the surgery? Did he put any odds on the probability that you would have any leakage afterward?
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.
Went to the best. Both erosion of the mesh and hernias are possibilities as a result of these surgeries.
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