Tanglefoot
@tanglefoot
@tanglefoot
Posts: 17
Joined: Aug 02, 2015
Want to discuss prolapse bladder or any kind of prolapse
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
Liked by maisie2, JK, Volunteer Mentor, imallears
LetsGo
@letsgo
@letsgo
Posts: 11
Joined: Aug 05, 2017
@baxtersmom @pizon, So sorry you have had to endure multiple surgeries following your prolapse repair. I have not had this same problem but will tell you some things my urogynecologist who performed my surgery did tell me. I was very hesitant about having my prolapse repair done with mesh. He highly recommended it because of the condition of my ligaments (they were extremely stretched out and he did not believe just repairing the ligaments holding my bladder would last long-term). I also have another hernia that I have had for many years and has not caused me problems so it has never been fixed. The urogynecologist asked me if I had any hernias because he said he often sees people with very stretched out ligaments holding their bladder having other hernias as well. He said some people's tissue is just more prone to hernias and the prolapse is just a very specialized type of hernia. He had no reason to know that I had the other hernia and I would not have known myself had it not been found on a CT scan looking at something else (just by accident). So I went ahead and had the bladder prolapse repair done with mesh and I am so glad I did because after 6 months I have no issues at all. I had a stage 4 prolapse which was huge and often would bleed if I did much activity at all (or if I coughed or sneezed). So I am thinking that you may be like me and sort of prone to hernia due to the nature of your tissue. My regular gynecologist was planning to do my prolapse surgery without mesh but after consulting 2 urogynecologists who do prolapse surgeries all the time, I decided to go for the mesh repair. If you still feel like you are sitting on a ball then something is not right and I think your prolapse may have come back. I am no doctor but my urogynecologist told me that the prolapse coming back was almost a certainty if he did not use the mesh since I have other hernias and am apparently prone to them. I sure hope you get it figured out but I would encourage seeking the advice of another specialist in uterine prolapse. If you are hesitant about the mesh I certainly do understand as I was adamant I did not want it. But it is not the same mesh used by doctors a while back and the type you see in the lawyer commercials that frankly scared me to death. I have had absolutely no problem with the mesh and am glad I went ahead and got it done. Best to you.
I would suggest addressing the constipation first. To get things moving milk of magnesia according to the instructions. Plan on being home that day. Then to maintain use Metamucil or physillium capsules (takes quite a few) also one senakot-s. Once you start to go more normally you may be able to stop the senator-s (docusate sodium). After that you can hope that the leakage stops n that some of the difficulty the dr has during your exam has lessen. The advice I was given after my surgeries was to never ever let myself get constipated. Being constipatrd adds stress once you have had prolapse surgeries. I do all the fruit n veggie things n drink plenty of water n still have to be careful. And remember caffeine is a dehydrator so too much of that can cause problems. Good luck
sueblue
@sueblue
@sueblue
Posts: 13
Joined: Feb 21, 2018
@baxtersmom @pizon, So sorry you have had to endure multiple surgeries following your prolapse repair. I have not had this same problem but will tell you some things my urogynecologist who performed my surgery did tell me. I was very hesitant about having my prolapse repair done with mesh. He highly recommended it because of the condition of my ligaments (they were extremely stretched out and he did not believe just repairing the ligaments holding my bladder would last long-term). I also have another hernia that I have had for many years and has not caused me problems so it has never been fixed. The urogynecologist asked me if I had any hernias because he said he often sees people with very stretched out ligaments holding their bladder having other hernias as well. He said some people's tissue is just more prone to hernias and the prolapse is just a very specialized type of hernia. He had no reason to know that I had the other hernia and I would not have known myself had it not been found on a CT scan looking at something else (just by accident). So I went ahead and had the bladder prolapse repair done with mesh and I am so glad I did because after 6 months I have no issues at all. I had a stage 4 prolapse which was huge and often would bleed if I did much activity at all (or if I coughed or sneezed). So I am thinking that you may be like me and sort of prone to hernia due to the nature of your tissue. My regular gynecologist was planning to do my prolapse surgery without mesh but after consulting 2 urogynecologists who do prolapse surgeries all the time, I decided to go for the mesh repair. If you still feel like you are sitting on a ball then something is not right and I think your prolapse may have come back. I am no doctor but my urogynecologist told me that the prolapse coming back was almost a certainty if he did not use the mesh since I have other hernias and am apparently prone to them. I sure hope you get it figured out but I would encourage seeking the advice of another specialist in uterine prolapse. If you are hesitant about the mesh I certainly do understand as I was adamant I did not want it. But it is not the same mesh used by doctors a while back and the type you see in the lawyer commercials that frankly scared me to death. I have had absolutely no problem with the mesh and am glad I went ahead and got it done. Best to you.
Thanks for the thoughts. I am no longer constipated – which is worse for the prolapse. However I am sure the missing thyroid and replacement med is the problem. It is really making me sick and they cant get the dosage right. I just go back and forth now between the BRAT diet and high fiber. Can't get it right no matter what I do. Gyn visit still scares me.as I leakage is there no matter what.
Re the urethral prolapse – caused by a urologist who botched a urethral surgery. However I can live with that but not with the rectal prolapse/ leakage. Why do us women have to suffer like that? Hugs
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 3204
Joined: May 10, 2017
@kanaazpereira Welcome to Connect, @fromwoundedness,
Having three surgeries in a short period of time must have surely taken its toll on you! Thank you for joining us and bringing your concerns here. You may notice that I moved your discussion and combined it with this existing discussion because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you may experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.
We have several other discussions where members have shared their experiences with bladder surgery/prolapse surgery. You may wish to read through the conversations in:
– recurrent bladder infections after prolapse surgery https://connect.mayoclinic.org/discussion/recurrent-bladder-infections-after-prolapse-surgery/
– Recurring bladder problems https://connect.mayoclinic.org/discussion/recurring-bladder-problems/
I encourage you to read the messages in this discussion as @maxann @maisie2 @pizon @littlesnowflake52 @AlwaysHopeful @gailg have shared insights and experiences that I think you’ll find useful.
@fromwoundedness, what is your biggest concern?
Hello, @indians, and welcome to Mayo Clinic Connect. I note you mentioned possible endometrial cancer and a possible hysterectomy.
I'm wondering if you would share a bit more about the symptoms you've been experiencing? Sounds like you may have had an appointment with a doctor?
LetsGo
@letsgo
@letsgo
Posts: 11
Joined: Aug 05, 2017
@baxtersmom @pizon, So sorry you have had to endure multiple surgeries following your prolapse repair. I have not had this same problem but will tell you some things my urogynecologist who performed my surgery did tell me. I was very hesitant about having my prolapse repair done with mesh. He highly recommended it because of the condition of my ligaments (they were extremely stretched out and he did not believe just repairing the ligaments holding my bladder would last long-term). I also have another hernia that I have had for many years and has not caused me problems so it has never been fixed. The urogynecologist asked me if I had any hernias because he said he often sees people with very stretched out ligaments holding their bladder having other hernias as well. He said some people's tissue is just more prone to hernias and the prolapse is just a very specialized type of hernia. He had no reason to know that I had the other hernia and I would not have known myself had it not been found on a CT scan looking at something else (just by accident). So I went ahead and had the bladder prolapse repair done with mesh and I am so glad I did because after 6 months I have no issues at all. I had a stage 4 prolapse which was huge and often would bleed if I did much activity at all (or if I coughed or sneezed). So I am thinking that you may be like me and sort of prone to hernia due to the nature of your tissue. My regular gynecologist was planning to do my prolapse surgery without mesh but after consulting 2 urogynecologists who do prolapse surgeries all the time, I decided to go for the mesh repair. If you still feel like you are sitting on a ball then something is not right and I think your prolapse may have come back. I am no doctor but my urogynecologist told me that the prolapse coming back was almost a certainty if he did not use the mesh since I have other hernias and am apparently prone to them. I sure hope you get it figured out but I would encourage seeking the advice of another specialist in uterine prolapse. If you are hesitant about the mesh I certainly do understand as I was adamant I did not want it. But it is not the same mesh used by doctors a while back and the type you see in the lawyer commercials that frankly scared me to death. I have had absolutely no problem with the mesh and am glad I went ahead and got it done. Best to you.
I’m hypothyroid as well. The problem with thyroid testing is that there is a range of what is considered normal and with Medicare and insurance how you feel or what is going on is NOT normally part of the equation. How I feel changes, sometimes palpitations and anxiety sometimes dead in my tracks on the same mg of medicine. I can only encourage to whine appropriately atvyour dr and see if they adjust the meds. But I’m not certain it’s related to small leakage. Sorry I’m not very helpful.
LetsGo
@letsgo
@letsgo
Posts: 11
Joined: Aug 05, 2017
@fromwoundedness So frustrated….after years of bladder issues, I finally had the opportunity to FIX IT! The excitement leading into the surgery, into recover was amazing. Everything was roses – ahead of schedule. Then came week 10 follow-up. The doctor's facial expression changed, he informed me that the sling was protruding into my vaginal walls. Initially, he said no sex – wait 2 more weeks (after 10!) see if it corrects itself. Two weeks later – no change. We discussed immediate procedure vs. taking her out for a test drive and returning. Sadly try #1 no go- I'll never forget my husband's loss of color when he hit the mesh. Try#2 No go as well. Try #3 was awkward for me, but successful sort of. Return visit/ wk#12 follow-up he opened me up to remove 2cm of mesh. We're wait and see again. Considering bladder leakage during sex was my number one complaint, and now the fix-all could prevent me from having normal intimacy with my husband moving forward…..I'm devastated.
Aside from being a celibate newlywed (and more importantly) I'm feeling much more uncomfortable this week (sore near my hip/anchors)…
I'm thinking I should call my regular Oby/Gyn for my annual so I have a second opinion before going to next appt. I LOVE the surgeon and really would recommend him again. But what ever "unique" side effect I have – I want fixed.
Anyone out their with negative side effects/recovery post-op? Anyone know what test/scans would be recommended? Is there a way to "observe" the entire sling and hip brackets without cutting me open? (3 surgeries in 9 months – I'm done)
My understanding there are no scans. My on gyn actually took a photo of my protruding mesh. It was5.5 months later and the same surgeon fixed it. Remember once it’s fixed that you wait a long long time as healing is much slower inside and you should be given some Premarin cream to help the healing process. My husband has waited 10 months as I wait for those last stitches to heal. Waiting is the best dr in the house. It’ll be like dating back in the Olden days…
Liked by Lisa Lucier, Connect Moderator
@littlesnowflake52 I had told my doctor that I always have to wear a feminine pad to keep me dry. She told me to start doing some kegal exercises but unfortunately they are not doing any good. I had told this to my oldest sister and she said that I may have to have my bladder pulled up. But I was thinking maybe I’d buy Ben-wa balls. Maybe they would help. What is your input on these?
I lost my 1st reply. I too have your mucus problem. What I do is ..cotton panties next to my body for comfort.. Then nylon panty with a thin extra long pad attached to the nylon pair. The pad must be thin as to not put more pressure on the prolapse and the longest made to cover the area. I have found a great brand..but I don't think I can post here. This isn't very glamorous. ..but it's the best I've come up with.
@tanglefoot Where are all the ladies who are walking in my shoes with a prolapse? There had to be more of you out there who are suffering silently like I did for years. Please don’t be alone, share your thoughts. I would like to help give you the advice that I have learned over the years to help you with your prolapse.
Best Wishes
Tanglefoot
I have a rather serious (stage 3 or 4 ) bladder prolapse that is impacting my life. I’m waiting for physio and a gynaecologist and trying to learn more. The surgery options scare me,especially comments I have read and the mesh scandles. I have really bad leg pain, and the golf ball size bladder sits below my vagina, except when lieing down. Walking and standing is getting harder. I’ve started estrogen but I’m cramping. Any advice or suggestions appreciated. I’m also low income. I had four vaginal births years ago, was widowed with 4 children upndef 8, now i am menopause aged 57. There must be helpsomewhere
LetsGo
@letsgo
@letsgo
Posts: 11
Joined: Aug 05, 2017
Sorry to hear about your misery but I’d follow the advice of your gyn. At 57 you have a long life ahead of you. Get this fixed but be ready for bumps along the way. It takes longer to heal then people think n follow every word of advice. Don’t become constipayed and don’t lift. My journey has been almost a year of healing. Even later thingscan happen but can’t be as bad as you have described.
Liked by Lisa Lucier, Connect Moderator
@letsgo Sorry to hear about your misery but I’d follow the advice of your gyn. At 57 you have a long life ahead of you. Get this fixed but be ready for bumps along the way. It takes longer to heal then people think n follow every word of advice. Don’t become constipayed and don’t lift. My journey has been almost a year of healing. Even later thingscan happen but can’t be as bad as you have described.
Thanks for encouraging reply.
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 3204
Joined: May 10, 2017
Hi, @galah11 — Really sorry to hear about this prolapse that is impacting your life at this point, plus the leg pain. That sounds super uncomfortable and inconvenient to have a golf-ball size bladder sitting "there" and having trouble with walking and standing.
Very wise that you are trying to learn more at this point.
I think that some of the women in this discussion may have some thoughts for you, like @pizon @goldenretriever @skd43usa and @letsgo, may have some input for you regarding surgical or nonsurgical options and how to manage the discomfort you are experiencing.
@galah11, what is your history with this condition? Has this come on you suddenly, or has this been building over time?
@lisalucier Hi, @galah11 — Really sorry to hear about this prolapse that is impacting your life at this point, plus the leg pain. That sounds super uncomfortable and inconvenient to have a golf-ball size bladder sitting "there" and having trouble with walking and standing.
Very wise that you are trying to learn more at this point.
I think that some of the women in this discussion may have some thoughts for you, like @pizon @goldenretriever @skd43usa and @letsgo, may have some input for you regarding surgical or nonsurgical options and how to manage the discomfort you are experiencing.
@galah11, what is your history with this condition? Has this come on you suddenly, or has this been building over time?
Hi and thanks for the kind reply, and reply. It’s been coming on for a time ( I had a trip to Thailand planned) but I delayed mentioning it to my GP until recently. I didn’t realise the leg pain was related and was going to investigate that also. I’m waiting for an appointment and discussion with a gynaecologist. Reading here I guess I feel nervous at surgery because of the mesh scandles and other people’s bad experiences but would rather not have the pain and discomfort for ever. I’m also waiting for a physio appointment and wonder how much improvement learning correct kegel exercises will do. So I’m in limbo, waiting, and trying to learn more. Thanks again
sueblue
@sueblue
@sueblue
Posts: 13
Joined: Feb 21, 2018
@baxtersmom @pizon, So sorry you have had to endure multiple surgeries following your prolapse repair. I have not had this same problem but will tell you some things my urogynecologist who performed my surgery did tell me. I was very hesitant about having my prolapse repair done with mesh. He highly recommended it because of the condition of my ligaments (they were extremely stretched out and he did not believe just repairing the ligaments holding my bladder would last long-term). I also have another hernia that I have had for many years and has not caused me problems so it has never been fixed. The urogynecologist asked me if I had any hernias because he said he often sees people with very stretched out ligaments holding their bladder having other hernias as well. He said some people's tissue is just more prone to hernias and the prolapse is just a very specialized type of hernia. He had no reason to know that I had the other hernia and I would not have known myself had it not been found on a CT scan looking at something else (just by accident). So I went ahead and had the bladder prolapse repair done with mesh and I am so glad I did because after 6 months I have no issues at all. I had a stage 4 prolapse which was huge and often would bleed if I did much activity at all (or if I coughed or sneezed). So I am thinking that you may be like me and sort of prone to hernia due to the nature of your tissue. My regular gynecologist was planning to do my prolapse surgery without mesh but after consulting 2 urogynecologists who do prolapse surgeries all the time, I decided to go for the mesh repair. If you still feel like you are sitting on a ball then something is not right and I think your prolapse may have come back. I am no doctor but my urogynecologist told me that the prolapse coming back was almost a certainty if he did not use the mesh since I have other hernias and am apparently prone to them. I sure hope you get it figured out but I would encourage seeking the advice of another specialist in uterine prolapse. If you are hesitant about the mesh I certainly do understand as I was adamant I did not want it. But it is not the same mesh used by doctors a while back and the type you see in the lawyer commercials that frankly scared me to death. I have had absolutely no problem with the mesh and am glad I went ahead and got it done. Best to you.
Problem is – I am not constipated right now, however I do need a "clean wipe" BM and that is hard to come by. My BMs are now softer and are a bit messy to clean up on myself which actually makes the prolapse and leakage worse. The prolapse gets irritated from all the wiping with baby wipes and iritation makes more mucous which leaks out. It seems I can't win whatever I do or eat. I am now on a more normal diet but have to supplement with rice, toast, bananas to try to get that perfect B . Sometimes it works and then there are times when it doesn't. i am afraid of any kind of stapling or anything as I have heard some horror stories regarding any procedures around the sphincter muscle. Apparently 8 times out of 10 the problem gets worse instead of better I still don't know how to get to the gyn though as I don't want to end up with sepsis from bavk door getting to the bleeding vaginal entrance.
coralbells1
@coralbells1
@coralbells1
Posts: 17
Joined: Apr 04, 2018
@colleenyoung Hi @Restless67
Good questions to ask! Here’s some info from Mayo about rectal prolapse surgery, including risks and what you can expect http://www.mayoclinic.org/tests-procedures/rectal-prolapse-surgery/basics/definition/prc-20013462
I’m also tagging @kamie @kathleenw @joycejem who were asking about rectal prolapse a while back. Kamie, Kathleen, Joyce did you choose to have the surgery done? Hope you’ll join the conversation.
Colleen
Connect Community Director
Please do not be afraid to ask your doctor about this problem. They are trained professionals and more than likely your doctor will refer you to a gynecologist who is even more trained in this area. Look at the Mayo Clinic descriptions of the vaginal and rectal prolapse. I have both and for the second time I will need surgery. I am looking forward to it, so my life can get back to normal. I hope this helps!
Gail, Volunteer Mentor
@baxtersmom
@baxtersmom
Posts: 84
Joined: Feb 03, 2016
@colleenyoung Hi @Restless67
Good questions to ask! Here’s some info from Mayo about rectal prolapse surgery, including risks and what you can expect http://www.mayoclinic.org/tests-procedures/rectal-prolapse-surgery/basics/definition/prc-20013462
I’m also tagging @kamie @kathleenw @joycejem who were asking about rectal prolapse a while back. Kamie, Kathleen, Joyce did you choose to have the surgery done? Hope you’ll join the conversation.
Colleen
Connect Community Director
@maisie2 and @Restless67 and others,
No one should be afraid to talk with your doctor about these things. They are more common than you may know. Once I talked to some friends about it I realized I knew 3 people who had surgery for prolapse. Who knew?
I had a stage 3 bladder prolapse for about 10 years and lived with it fine. Then it got worse and I tried a pessary which I could not wear. I had bleeding and even after the pessary was removed the bleeding could not be completely stopped. It went on for many months, then stopped but then came back again with a vengeance. I had a D and C but that did not help and I had a very thin uterus so there was no problem there. I went to one urogynecologist who was highly recommended and he was just too high pressure for me. He recommended a procedure called a Sacrocolpopexy and some other things which does involve mesh and is done with the Da Vinci Robot. I just was scared of the mesh so I continued to live with it. But finally the bleeding got so bad I went to a second urogynecologist and he recommended the same thing. But he took the time to explain everything to me. He showed me what the mesh looked like compared with the old type mesh that has caused so many problems. He explained why just fixing the ligaments that hold the bladder and other organs in place would not be a good solution long-term. He said my ligaments were too damaged and weak and that if we did that, I would be back in surgery in a few years. Sounds like that is what @Restless67 may be dealing with. I was still hesitant because the procedure usually involves hysterectomy and I just could not get passed that. So I held off until I got to where I could not urinate easily and once even had to go to the doctor to get a catheter put in so I could. It was no way to live. Bottom line is I had the surgery last October and it is the best decision I ever made. My doctor did a urodynamics test prior to surgery to try to anticipate if I would need some minor corrections to eliminate the possibility of incontinence following surgery. Turns out I did. The reason for this is that your prolapse can actually mask incontinence because of its position and once it is fixed sometimes people have incontinence if that is not adjusted for.
This is why I say you must have a really experienced doctor. After surgery, I stayed in the hospital 2 nights and went home end of day 3. I would have liked to have stayed one more day but once I got home and got settled I was glad to be home. The first few days are a little rough until you have your first bowel movement as you may feel a little bloated. But I really had very little pain and once the catheter came out (after 7 days) I was great. I know these details are not pleasant but really I would encourage each of you and anyone who has this issue affecting their life in a major way to find a really good urogynecologist (most gynecologists will just do ligament repair) and maybe even consult more than one. I just had my 6 month checkup and everything looked perfect. I am so sorry you are dealing with this. It is so unpleasant but all the restrictions on your life are so limiting if you can do something about it. Just look into it and find a doctor that won't pressure you to do anything if you are not ready. If you llive in a small town and their are no urogynecologists then look into travelling to one in a larger city. But at least check it out and know that it is not as scary as it may seem. Best to everyone going through prolapse issues.
@sueblue
In reply to @baxtersmom
Hi y @skd43usa, – sorry to hear you have all 3 prolapsed. I have had a prolapsed urethra for years but have not done anything to correct it. However, I have recently gotten a mucosal rectal prolapse and that is devastating. I had severe hypothyroidism and they made me get the radioactive iodine pill to kill off the thyroid. However I was overdosed and it caused extremely bad constipation when I turned hypothyroid , thus the prolapse from straining. I also have a mucous discharge from the anus, probably from the inflammation as the prolapse comes in and out at will and I wipe it and wash it at times. I am going to pelvic PT to try to strengthen the sphincter muscle but so far I am not doing that well. The therapist insisted on doing a vaginal exam to test the shphincter tone and I think she pushed a bit of the discharge up into my vagina as I have developed a yellowy discharge from the vagina since ten. I am afraid to go to the
gyn as I do not know how to prevent leakage from the back door and do not want more pushed up there. A;lso I am 79 and very atrophic and in the past after a gyn visit I bleed for 2 days from the speculum opening me up.
Do you have a discharge problem from the back door as well? If so how do you handle it? I tried putting a gauze pad there between my cheeks but because of the prolapse coming in and out, it stuck to the gauze pad and hurt when I took it off to pee. Luckily it did not bleed but afraid to do that again. As far as surgery there, I have been advised that it can make the situation worse, is not a permanent fix, and could cause permanent real bowel incontinence when they fool around with the sphincter muscle. Don't know if I can live with this one tho. It is taking my life away. Occasionally I do even get some fecal leakage but not too often, just the yellow mucous which do strain my undies. I was throwing them out but now bleach them first and rewash as could not afford new undies every week. I also find that at nite anything running ut goes to the front area which is disturbing so at nite I do put a 2 x 2 gauze pad between my vagina and anus to prevent anyting from leaking that diretion. However I put a vit of vaseline on my AH so if the pad should touch the prolapsed insides it wont stick and maybe tear me. Can't do that during the day however as it is very irritatting to have the pad there when sitting, etc. and it also falls out from my cheeks easuily. If it was just incontinence and no prolapse I coud handle it better.
Do you have any suggestions how to go to the gyn for an exam? I am more afraid of the days afrter I guess as I am afraid of any contamination in the area of the vaginal opening where it will be bleeding and open for infection, or worse sepsis – getting into my blood stream.
Hell to get old!!!!!!