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

Had surgery for cystocele and rectocele 2weeks ago. Refused mesh repair after research showed 25 percent mesh damage could occur. Has pigskin graft instead. Anyone else have this done? Amazingly no pain just discomfort

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I had a stage 4 pelvic organ prolapse and had had constant pressure/pain, and a lot of discomfort with bodily functions. I had a sacrocolpopexy, rectocele repair, and perineum repair a few months ago. I no longer have pain, pressure, organs falling out of me, and am totally normal with my bodily functions and anatomy. Yeah! :-). However, I continue to have nonstop discharge. The last doctor I went to wanted to operate right away and take all the mesh out of me. BUT she couldn’t answer whether I would then go back to having all the previous problems that I had! I did have a subsequent operation after my original sacrocolpopexy and they found that the anterior mesh arm had fallen off the sacrum but was adhered to the posterior mesh arm which they strengthened with additional sutures. They also found that mesh had extruded into my vaginal wall so they clipped that off and sutured the opening. It took care of all the residual pain that I had had but NOT the discharge. So I would say that I am still ‘in process’ and hope that Mayo will help me with the continuing discharge. BUT, having said that, I am in a MUCH better place physically today than I was before my original sacrocolpopexy. So I would say, ‘fear not’. Oops just noticed that your post was from 2012! Guess this isn’t an active forum. Not surprised as it took Mayo over 40 MINUTES! to get me to the right department today!!

Liked by Gúñû

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@operationqueen

I had a stage 4 pelvic organ prolapse and had had constant pressure/pain, and a lot of discomfort with bodily functions. I had a sacrocolpopexy, rectocele repair, and perineum repair a few months ago. I no longer have pain, pressure, organs falling out of me, and am totally normal with my bodily functions and anatomy. Yeah! :-). However, I continue to have nonstop discharge. The last doctor I went to wanted to operate right away and take all the mesh out of me. BUT she couldn’t answer whether I would then go back to having all the previous problems that I had! I did have a subsequent operation after my original sacrocolpopexy and they found that the anterior mesh arm had fallen off the sacrum but was adhered to the posterior mesh arm which they strengthened with additional sutures. They also found that mesh had extruded into my vaginal wall so they clipped that off and sutured the opening. It took care of all the residual pain that I had had but NOT the discharge. So I would say that I am still ‘in process’ and hope that Mayo will help me with the continuing discharge. BUT, having said that, I am in a MUCH better place physically today than I was before my original sacrocolpopexy. So I would say, ‘fear not’. Oops just noticed that your post was from 2012! Guess this isn’t an active forum. Not surprised as it took Mayo over 40 MINUTES! to get me to the right department today!!

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Haha….yes 2012 I had the mesh repair you mentioned. Sorry to hear you are
having problems and appreciate your response anyway 🙂

I haven’t had any constant discharge but a new thing called BV has entered
my women’s issues vocabulary. Bacterial vaginitis. I’ve probably had it 5
times since my surgery and there is a discharge. I’ve been told it is not
an STD and it’s just an.overgrowth of natural bacteria with something to do
with a pH change, either alkaline or acidity. I think they can test for
that and prescribe natural treatments to return normal pH levels. I will
try this if I get the symptoms again. Mayo and local gynecological staff
told me the same thing.

This may not be relevant but Good luck with your symptoms and hope you get
it resolved..

Take care….
MJ

Liked by Lisa Lucier

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Hi I was wondering did you ever have your surgery? If so how did it go and how do you feel now. I hope it went well I am thinking of having it and am looking to hear of other women’s experience with it? My dr.is suggesting to sew up the bladder no mesh

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@pizon

Hi I was wondering did you ever have your surgery? If so how did it go and how do you feel now. I hope it went well I am thinking of having it and am looking to hear of other women’s experience with it? My dr.is suggesting to sew up the bladder no mesh

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Have you had previous surgery ?

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@pizon

Hi I was wondering did you ever have your surgery? If so how did it go and how do you feel now. I hope it went well I am thinking of having it and am looking to hear of other women’s experience with it? My dr.is suggesting to sew up the bladder no mesh

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Hello @pizon. It looks like you’ve been busy doing your research and hopefully getting some answers and concerns smoothed out while weighing your options. I can imagine this to be a very tough healthcare decision. I’m sending good vibes your way and wish you the very best outcome possible.

@wandili, @montanagal and @operationqueen– are you able to help with the question that @pizon has posted about surgery. Any advice would be greatly appreciated. We are so fortunate to have Mayo Clinic connect and to be able to talk with others who have experiencd something similar to our own situation.

@operationqueen, congratulations on your succesful operation. Post operatively, how much healing time was involved? How are you feeling now?

@pizon, please keep us updated along your journey.

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@pizon

Hi I was wondering did you ever have your surgery? If so how did it go and how do you feel now. I hope it went well I am thinking of having it and am looking to hear of other women’s experience with it? My dr.is suggesting to sew up the bladder no mesh

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no I have not had any repair surgery I have had on each of my overays in the past for cysts removal but nothing for the prolapse no mesh dr. wants to just sew up the bladder and the ligaments for the uterus but I am having pain du2 pelvic floor muscle spasms p/t is helping just very scared I also have a sinus issue that isn’t helping matters

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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.

Liked by Lisa Lucier

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Hi, @letsgo. Welcome to Mayo Clinic Connect. I’m glad you’ve found this community. Thanks for the background on your surgeries and the repairs done. You have some good ideas about offering tips and information from patients who have been there. We have seen that this site and the community here can provide just that, as well.

I’m inviting @uschi, @upartist ,@maxann @AlwaysHopeful, @Restless67 , @maisie2 and @pizon into this discussion because they also have mentioned prolapse and/or repairs. I’d love for them to share their experiences and thoughts with you.

@letsgo, would you have some advice for others who are undergoing a similar surgery that you could share here with this community?

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Hello Letsgo,
I am sorry you had trouble finding those individual little recovery strategies/pearls post surgery, like the perfect pair of briefs. I to had those hurdles. I also wore maternity slacks and loose fitting tops for about two months post surgery due to tummy swelling. Some of your symptoms (hot cold intolerance and being emotional for example) may be attributed to the hysterectomy, as there are commonly hormonal fluxes following removal of the ovaries, if that portion took place with you. Bowel rhythm may wane and eb (sometimes takes a nap) following abdominal surgeries in many people, but not everyone. This can cause nausea, and needs to be monitored closely and managed carefully to prevent obstruction, and dehydration. I would recommend to anyone having any version of this sacrocolpopexy to hang out in the vicinity of the treating hospital for about a week after discharge. This will give you time to see how your body is going to respond to the stress of the surgery. In doing so, you would be able to access your original treating urogynecological team if you had problems or questions. It is a complex surgery and clinicians in out lying areas may not be familiar with it. I wish that I had done that myself. I hope your recovery goes well, especially over these next 6 months of getting back into normal activities. Take things gradually, keep the gentle stretching going daily, and avoid high impact movements even if your feeling fantastic. Go with fun low impact exercise. Good luck!
Respectfully,
UPArtist

Liked by Lisa Lucier

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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.

Liked by LeighO57

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@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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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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@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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Hi, @gailg. There are urogynecologists with lots of experience with those surgeries at Mayo Clinic. If you look at the bottom of this page, you will see a list of four of them. You can click on them to learn more about them in their profiles, if you’d like:http://www.mayoclinic.org/departments-centers/obstetrics-gynecology/minnesota/doctors/by-specialty.

You mentioned you felt your symptoms are getting worse. Which symptom is most bothersome at this point?

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@letsgo

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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HI, @letsgo. Wanted to check in with you and see how you are doing with your recovery from your surgery?

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@letsgo

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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I have not done surgery .

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