Cystocele (aka droopy bladder)

I was just recently diagnosed with a cystocele and have not found very much information about how others have dealt with this problem when I put it in the search box.  Perhaps I am one of the very few that has this, or maybe no one talks about it.  I have read about the various pessaries and surgery.  I have come to the conclusion that obliterative surgery to the vagina is the most successful in terms of not having a recurrence of the prolapse.  Has anyone struggled with this problem or any information.

Comments

  • coraleliz
    coraleliz Member Posts: 158
    edited October 2014

    Just saw my urologist this week. I don't have a cystocele but have been dancing around the hysterectomy decision. The urologist told me that a cystocele/droopy bladder doesn't happen that often following a hysterectomy. "Only about 10% of the time". Sounds like a large number to me. My problem is probably Interstial Cystitis. So I don't want to risk having my bladder droop & causing me more problems. Years ago my grandmother had hers "tacked up". Not sure if they still do that or what that really was.

    Hope someone comes by with useful info for you.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Hi Coraleliz- Thanks for letting me know that you also are in the process of making a decision that involves perhaps dealing with a prolapse at some point.  I have read about the types of surgery and the mesh inserts but the success rate after one or two years is astonishingly small, let alone after five years.

    I do use d-mannose to control UTI's and it seems to work for me.  

    Do you know if the "tacked up bladder" remained successful for your grandmother?  My GYN said it is a trait we inherit and I did hear that my grandmother had a cystocele but I never heard my mother mention one.

    Sending good thoughts.

  • jelson
    jelson Member Posts: 622
    edited October 2014

    my mom had cystocele surgery, the prep for which was complicated by a pre-existing clotting condition, the gyno was so freaked out that she  just wanted to get in and out and didn't really do the surgery - by the time my mom went in for her post-surgery check-up, she had a rectocele. what we since learned was that everything should have a been addressed, because when you start messing around with one organ down there, the others shift around, so make sure they string up everything that might collapse. She ended up with a pessary, which we found very funny since we were told they have been found in Egyptian mummies. Anyway the protocol for my mom was removal/cleaning/replacing  the pessary every 3 months, which if you have vaginal atrophy from whatever cause, (my mom was in her 80s at the time) is very painful. 

    when I was talking with my gyno about a then upcoming hysterectomy and my fears about prolapses of all remaining organs, he said he would hitch up the ligaments holding the pelvic floor or something like that. But he didn't do the hysterectomy and so I am not very clear on that. He did say, that from previous procedures on me, he didn't think my pelvic floor/ligaments - whatever were weak - so that it something to talk about with your doctors. 

    all you ladies, good luck in dealing with your conditions/decisions.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Hi Jelson - Thanks for posting what information you have about this subject.  I never gave thought to other organs prolapsing because of the surgery.

    In the surgery I am considering they literally tack the vagina closed.  It is my understanding that this then provides the needed support for the bladder and bowel.  Not that my husband is elated about that type of surgery however he understands that taking the route of the least side effects and a higher percentage of a successful outcome are determining factors.

    Before the end of the year I will be talking with various surgeons about this procedure. 

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2014

    not sure about a cystocele, but I have prolapsed bladder.  Went to a gynourologist and discussed options.  I went with a pessary.  It works well, but with taking tamoxifen, it made dryness a much bigger problem than it was before.  I started using estrogen cream (a very small amount with my oncologist's okay) which helps.  It I really painful to remove it though.  Enough that I have stopped using it.  Good news is the amount of time I did use it has helped the situation even now that I am not using any more.  If it becomes a problem again, I think I will probably do surgery.  I hope this wasn't TMI.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Kay G - Thanks for your info on a pessary.  I have thought about it yet have read that there is a problem if the vagina is dry with sensitive walls.  A cystocele is the same thing as a prolapsed bladder.  I am, as of now, undecided as to whether I will try a pessary first before considering obiterative surgery.  

    You mentioned that now that you aren't using a pessary it still remains stable.  How old are you?  I am wondering if being younger makes it easier to modify the problem.  Perhaps I should try that route first.  

  • Kay_G
    Kay_G Member Posts: 1,914
    edited October 2014

    hi I am 51, have had the issues for quite a while though.  The gyn said in my case it happened because of carrying large babies.  I have 3 children.   Good luck, hope whatever you choose works out for you.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Kay G - Thanks for answering my question.  I am 74 and just developed this problem in July.  I will ask my gyn if he thinks that use of a pessary would either prevent it from getting worse and/or change the moderate cystocele.  I do have vaginal atrophy and would want to learn how to remove, clean, and reinsert it on my own.  I appreciate the information everyone has given me.

  • coraleliz
    coraleliz Member Posts: 158
    edited October 2014

    gentianviolet-My granmother had her bladder "tacked up" when she was in her early 60s(before I was born). I remember she always had to wear pads. So it didn't solve all her problems. 

    I'll read up on d-mannose. I really do think I have interstitial cystitis. I have had sensitivities to foods long before breast cancer. It seems that everytime I have a D&C, I end up with UTI symptoms. Only once did anything grow on the culture. This goes back to miscarriage D&Cs as well as the ones I'm getting because of Tamoxifen. 

    I've been on Tamox for 3years & was hoping to complete 5. I've had 2 D&Cs since starting Tamox. I was given the hysterectomy option. With D&Cs I'm fine the next day. Hysterectomies take much longer to recover from. I'm trying to figure out how many D&Cs=hysterectomy. Not sure it's a solvable equationScared. It's possible I'll end up needing a hysterectomy anyway if I get a bad biopsy result. My urologist's advice was to not have the hysterectomy(GYNs suggestion) at this point. To wait until I'm off of Tamox & see what resolves. She said a "sling" would be tricky for me because of my anatomy. I'm turning into my grandmother, I think......

    I'll "tack" this thread to my favoritesThumbsUp

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Coraleliz- When I started tamoxifen at the beginning of 2010 I began experiencing UTI's every three months. They did not always find bacteria when I gave them a urine sample but they eventually gave me a script that I could fill and keep on hand to take when I needed it.  Desperate to find an alternative to so many rounds of antibiotics I happen to find a web site about d-mannose.  I devoured the information because everyday I worried that I would end up with a UTI and the dreaded symptoms that come with it.  I quite taking tamoxifen (6 months shy of 5 years) mid-July and I was amazed to find so many things that I thought were side effects, actually were, even though the med onc and rad onc were convinced that it was "old age".  I do believe that the web site I found mentioned that d-mannose was also excellent for people with interstitial cystitis.  If you can't find that particular site, let me know and I can go through my history and find it.  Perhaps when you get off of T your symptoms will resolve too.  

    I have never had a D&C so I sympathize with you, I am sure it is inconvenient as well as worrysome.  Are you in the process of waiting for a biopsy result?

    I have heard from a few friends who had mothers and grandmothers with "tacked up bladders" and have not heard of one totally successful story; sometimes I think women have way too many parts that can cause problems.  Thanks for your interest and sharing what has happened to you.

  • noonrider
    noonrider Member Posts: 203
    edited October 2014

    When I was 29, after my babies I had grade 3 uterine prolapse and cystocele. I had a partial hysterectomy (removed uterus and cervix, kept my ovaries) and had them tack my bladder to my ears!!!!!!! 

    No really, this was in 1997 and my doctor was already suspicious of the sling method using mesh. My surgery was done vaginally. The doctor tacked my bladder to the abdominal wall and I haven't had any problems since and its been almost 18 years. I have no idea if they still use that method today, but it has worked for me. 

    It was a bit of an emotional roller coaster to lose my uterus at such a young age, but I had 5 kids by then. Still, I didn't feel "done" and I was pretty upset. I ended up getting divorced when my youngest was 5 and remarried when she was 7. Now she's 18 and we have four more kids by adoption. 

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited October 2014

    Coraliz, I had a hysteroscopy.  Way, way, less of an issue than a D&C, and less painful than an endometrial biopsy.  You're awake.  The doc injects your cervix with anesthetic (this is why it is less painful than the endo biopsy).  Yes, there are a few cramps as he dilates your cervix, then I had absolutely no pain as he (and I--there's a monitor) looked all around my uterus.  In my case, I had the procedure because I'd had spotting and, lo and behold, there was a polyp, which he removed with absolutely no pain. I'd been terrified of the procedure and, accordingly, was pretty spacey afterwards.  My husband (now ex) drove us directly to a car dealer and we bought him a car.  Not sure we could have done that after a D&C. 

    I've had the bladder hoist (as I call it), with some issues.  The doc offered a choice of using my own tendons, which he did tell me might stretch, or mesh (not the mesh you hear about on TV).  Natural me chose the natural option.  My tendons stretched and, at some point, I'll need to have a re-do using mesh.

    I told my surgeon I wanted a second opinion before I jump back in and was surprised that all six of the options he presented were, like him, urogynecologists.  I know gyns and urologists also do this surgery, and was somewhat surprised, but assume he wanted to refer me only to people whose practices focus on this procedure.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Noonrider - I am very interested in your procedure of tacking the bladder to the abdominal wall and here you are so many years later with no problem.  Unusual outcome, compared to the other stories that I have heard of various surgeries to repair the position of the bladder.  Is there a specific name for this surgery?  Was it done under a local or general anesthetic?

    I can't imagine having a partial hysterectomy at such a young age.  I seemed to have a hard time just knowing after the birth of out third son that my husband wanted a vasectomy and no more children.  Oddly enough once the boys were adults he asked me, "Why didn't we have more children?"

    Thanks for the information about your bladder surgery, I am interested in what ever else you can share.

  • Kruise
    Kruise Member Posts: 242
    edited October 2014

    hi ladies - I had the 'sling' or 'mesh' surgery over 3 years ago due to prolapsed bladder after 4 natural birth big babies. To be honest it seemed to work for abit but now I reckon I'm back to square one again with it...it's not really an issue unless I start running or anything :-) so yes I do wonder whether a pessary type thing is just as good. I hear being overweight doesn't help things and also does anyone do those pelvic floor exercises too?? Not me....lol

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2014

    Kruise - Thanks for your information about the sling/mesh surgery.  Reading about your experience and other articles on the internet is leading me more in the direction of the obliterative surgery for the vagina.  If I am going to subject myself to an operation, I would prefer that I am not back at square one within a year or two.  I have googled what the unintended consequences of that type of surgery are and so far have found very little to dissuade me from choosing it.  

    I am very grateful to all that have been kind enough to share their experiences.