Want to discuss prolapse bladder or any kind of prolapse

Posted by Tanglefoot @tanglefoot, Aug 2, 2015

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

@sulli

I’m new just tonight but I would think that if there are products that would make a difference to our situations, it would be great to know that. I dont mind as long as it isn’t a pushy experience.

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A good urogynecologist can recommend a pelvic floor therapist. (I’ve seen 2 urogynecologists and many p.t.s over the years, as my situation stabilized and then became worse.) As you know, some health professionals are much better than others.
Get a 2nd (and 3rd?) opinion if an MD is recommending surgery, and get it outside of the practice/hospital where you received the 1st opinion.
…many techniques/tips I can share if you have specific concerns/questions.
I have a stage 2 anterior compartment prolapse.

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@mslw and @sulli
I had a prolapsed bladder for about 10 years. It finally reached stage 4 despite the fact that I tried many of the pelvic floor exercises but was not able to get it to stabilize. I finally had surgery but that was with the third urogynecologist that I went to. Certainly at stage 1 or 2 an exercise or pt approach may work better than it did on my stage 3-4. I consulted a website called Whole Woman (www.wholewoman.com) during my attempt to find an alternative to surgery. The founder is a woman named Christine Kent and she explores a number of therapies. She is a true believer in pelvic floor therapy. I read some of her literature and tried her approach. I also know that many people will try to scare you out of surgery so be mindful of that was well. I believe in getting as many opinions as you can from reputable urogynecologists and other options such as physical therapies. I found that my regular gynecologist was a little more conservative and had more interest in helping me with other therapies besides surgery than did the urogynecologists that I consulted. Most of them were more surgery-oriented. If you are located in an area where there is a medical school or where there are more new age type of folks, you might be more successful in trying to find alternatives. I first visited a urogynecologist who was very pushy and like you say, I was not interested in being pushed. After several years, I tried a pessary at a gynecologist who had a nurse who basically did nothing but fit pessaries. There are many different kinds so if you can find someone who does a lot of pessary fittings and has the patience to help you while you try to find one that works best, then this might be an option for you. I recall the relief when I first tried a pessary as all of the sudden that "bulge" was gone.

One thing that did start to happen is I had a little incontinence after having the pessary for a while. This is because the prolapse can mask incontinence by dropping so far down that the gravity/physics of the situation inhibits the flow of urine. Once the bladder is lifted by the pessary, this inhibition is no longer there. There is literature suggesting that the success of the pessary, even short term, depends on the stage of prolapse. After a while it just got to the point where it would not stay in place but my prolapse was stage 4 by then. I do feel that the time I put the surgery off was valuable in that by the time I did it I had gotten a number of opinions, tried many things, and was thus very comfortable with surgery. The surgery was also a very non-invasive one compared to what I might have had ten years prior.

I would try looking at the Whole Woman site and other literature she sites and try some of her approaches. Also, keep the pessary in mind. I have not searched for these approaches in a number of years since I ultimately did have surgery two years ago, but I believe in trying all that you can before surgery so that if you do end up with a surgery you have done your homework and are completely comfortable with your decision. It becomes a quality of life issue in my opinion. If it is not causing you pain or too much inconvenience or interfering with your life then I would say you should be looking into alternative therapies..

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@baxtersmom

@mslw and @sulli
I had a prolapsed bladder for about 10 years. It finally reached stage 4 despite the fact that I tried many of the pelvic floor exercises but was not able to get it to stabilize. I finally had surgery but that was with the third urogynecologist that I went to. Certainly at stage 1 or 2 an exercise or pt approach may work better than it did on my stage 3-4. I consulted a website called Whole Woman (www.wholewoman.com) during my attempt to find an alternative to surgery. The founder is a woman named Christine Kent and she explores a number of therapies. She is a true believer in pelvic floor therapy. I read some of her literature and tried her approach. I also know that many people will try to scare you out of surgery so be mindful of that was well. I believe in getting as many opinions as you can from reputable urogynecologists and other options such as physical therapies. I found that my regular gynecologist was a little more conservative and had more interest in helping me with other therapies besides surgery than did the urogynecologists that I consulted. Most of them were more surgery-oriented. If you are located in an area where there is a medical school or where there are more new age type of folks, you might be more successful in trying to find alternatives. I first visited a urogynecologist who was very pushy and like you say, I was not interested in being pushed. After several years, I tried a pessary at a gynecologist who had a nurse who basically did nothing but fit pessaries. There are many different kinds so if you can find someone who does a lot of pessary fittings and has the patience to help you while you try to find one that works best, then this might be an option for you. I recall the relief when I first tried a pessary as all of the sudden that "bulge" was gone.

One thing that did start to happen is I had a little incontinence after having the pessary for a while. This is because the prolapse can mask incontinence by dropping so far down that the gravity/physics of the situation inhibits the flow of urine. Once the bladder is lifted by the pessary, this inhibition is no longer there. There is literature suggesting that the success of the pessary, even short term, depends on the stage of prolapse. After a while it just got to the point where it would not stay in place but my prolapse was stage 4 by then. I do feel that the time I put the surgery off was valuable in that by the time I did it I had gotten a number of opinions, tried many things, and was thus very comfortable with surgery. The surgery was also a very non-invasive one compared to what I might have had ten years prior.

I would try looking at the Whole Woman site and other literature she sites and try some of her approaches. Also, keep the pessary in mind. I have not searched for these approaches in a number of years since I ultimately did have surgery two years ago, but I believe in trying all that you can before surgery so that if you do end up with a surgery you have done your homework and are completely comfortable with your decision. It becomes a quality of life issue in my opinion. If it is not causing you pain or too much inconvenience or interfering with your life then I would say you should be looking into alternative therapies..

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Thank you for so much good information and advice!
I will look at WholeWoman.com and be mindful of what you wrote re: surgery if (when?) my prolapse is worse.
…think we also have some orthopedic problems in common, i.e., scoliosis and ankle issues, so I will read your posts on those subjects too.

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Gail, I have been scheduled for surgery for April for vaginal vault prolapse and the procedure would be vaginal, sewing up the vagina. I am going to cancel because since I have an anxiety disorder as well, I can't bring myself to do it. what kind of surgery did you have and how long was the recovery? Did u have any complications? ggm

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@ggm43 ,
Thank you so much for reaching out. I know how concerning a coming surgery can be. I had what is known as a Sacrocolpopexy which is done with the DaVinci robot. It was done along with a hysterectomy (because these parts are in the way essentially) and a few other nips and tucks back on Oct. 18th of 2017. It was done mostly with a laproscope 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. They were dissolving stitches between the vagina and the rectal area and these went away on their own. There are some innervation issues that affect the rectal area and this just takes a while for the nerves to regenerate but once they did, I had no 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 before I did, 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 selecting 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 64 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 that 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.

I have heard of the procedure you are scheduled for and remember reading about it at the time I was researching before my surgery. Have you considered other types of surgery? I am curious as to why your doctor is recommending the complete sewing of the vagina (if I understand you correctly). If you have not considered other options, I encourage you to do so. I am glad I took my time and explored all possible options before moving forward. If you can give me a little more information about your particular circumstance, I might be able to offer a little more advice.

Also, please know that it would be abnormal if you were not anxious before surgery. I know I was. But I was also so tired of fooling with the prolapse that I just wanted to get it over with. But being anxious is completely normal.

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@sulli

I’m new just tonight but I would think that if there are products that would make a difference to our situations, it would be great to know that. I dont mind as long as it isn’t a pushy experience.

Jump to this post

@sulli The main products that I am aware of are various medications that help with urinary incontinence. There is a device that is not widely available, I believe that's for fecal incontinence. For urinary incontinence, there is a device called a "sling". I knew one woman who said it was a Godsend, but others who don't feel it helped much.
I'm not sure what you mean by a "pushy experience". Could you please elaborate a bit?
Thanks.

@coralbells1 I too recently had pelvic floor physical therapy. referred by a urogynecologist at a major teaching hospital. It definitely did help, but I have not seen as much improvement as you have. I can now "hold it" better than I used to, but I still wake up numerous times a night for bathroom calls. I have fewer problems during the day, particularly "latch key incontinence", a specific type of urge incontinence.

@mslw I believe it's always a good idea to get a second opinion with someone outside of where you received the first opinion. Good advice for this and for anything where you want a second opinion.

@baxtersmom Your surgery was Sacrocolpopexy for prolapse. Am I correct in thinking that your prolapse was more than typical incontinence? I'm just trying to figure out my potential options, if I do proceed further. Thanks.
Also, I thought I was spelling your name correctly but for some reason it was not picked up by the system as it usually is.
JK

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I needed a hysterectomy 5 years ago due to prolapse of uterus, bladder and colon. At that time uterus and ovaries were removed and work was done to tie up bladder and colon. The colon held, but prolapse is often caused because our support tissues thin out with age leaving nothing strong enough to tie up to.. So my bladder still wasn't supported tight enough even after tie up.

I went to a specialty surgeon, his only procedure was bladder repair/prolapse repair and had the "new mesh" put in and also a sling device to lift the urethra to straighten so nothing blocks the voiding of the bladder. That was 4 years ago and it worked immediately and now have the the bladder of a 20 year old.
I was very concerned about rejecting the mess and/or sling device. The "old mesh" did have allergic rejection issues. Other's on this site might know me from blogging on the Mayo skin site because I have an arsenal of allergies and so truly feared a rejection of these implants. I had been assured I would not be allergic to these (based on results of 5 Day Extended Patch Test) and as it turned out so far so good.
No more leakage. Period. Zero. I normally about 4 hours before urinating and I drink lots of fluids.

This surgery does tale a few weeks to heal up and like the hysterectomy no heavy lifting for a period of time but the pain and down time is minor compared to recovering a hysterectomy. Both hysterectomy and bladder mesh/sling repair were done vaginally.

However- do not let your ob/gyn doc do this surgery. That gynecologist who did my hysterectomy had no business trying to repair my bladder. You must go to a surgical bladder repair specialist.

The doctor I traveled to was Christian Quintero, MD, FACOG, Female Pelvic Medicine and Reconstructive Surgery, University of Nevada School of Medicine, at Women's Healthcare Center of Las Vegas. He is not a typical surgeon in that he listens, explains carefully using his computer to show photos and takes his time with the patient.

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I AM VERY FRIGHTENED ABOUT UPCOMING SURGERY, WHEN U SAY THE NEW MESH, IS THAT AVAILABLE NOW TO ALL DRS? DO U KNOW WHAT IT IS CALLED AND DID HE MAKE A SLING? WERE U HAVING INCONTIENCE PRIOR? SORRY FOR ALL THE QUESTIONS BUT I NEED SOME ANSWERS DESPERATELY. ALSO, DID U HAVE ALOT OF BLEEDING AND PAIN AFTERWARDS AND HOW LONG BEFORE U COULD DRIVE? THANKS FOR A REPLY. GGM

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@ggm43 and @contentandwell
You are correct @contentandwell that the main reason for my surgery was not incontinence. I was experiencing little of that problem. My prolapse had just gotten so bad that it was irritating the vaginal area and causing bleeding. The pessary I had tried began to rub and exacerbated the situation. I was also having difficulty urinating because when the bladder drops down, the urine is unable to flow upward as it would need to in order for you to be able to relieve yourself. I had to go in a couple of times to get a catheter put in to help me with urinating and when that began to happen fairly regularly along with the bleeding I knew it was time to do the surgery.

As far as incontinence goes, my doctor did what is called a urodynamics test a couple of weeks prior to my surgery. The purpose of this is to try to estimate whether you are likely to become incontinent once the bladder is put back up where it belongs (as I mentioned previously the prolapse can mask incontinence). So he determined that I might have some post operative incontinence and so during the surgery he did some type of procedure to adjust things to minimize the chance of incontinence after the surgery. He must have estimated well because I have not had incontinence since my surgery and I often joke as @gardeningjunkie mentioned I now have the bladder of a 20 year old.

The mesh used in my case was very thin (almost like nylon stockings). The older mesh was thicker and rougher. My doctor had a drawer full of all different types of mesh. He showed me how it had progressed over the years and it looked like he had a display set up for that because he gets the mesh questions a lot. The type of mesh that you hear about on TV from the attorneys talking about lawsuits and complications from "mesh erosion" is not the type mostly in use today. I cannot speak to what a given doctor might use (best to ask the doctor about this if you are concerned about it).

With regard to the posts from @ggm43 I believe you had previously said you were having a complete closure of the vagina. I do not know much about this procedure but my understanding is that this is recommended in certain specific instances where it is believed the other procedures such as a sling (which I did get as a part of my surgery) will not work or where other options are deemed not indicated. But I do not know in your case @ggm43 why your doctor has recommended this particular procedure. Did he tell you why he chose this procedure for you? If you have not discussed this with him, you should definitely do so. None of us are doctors so we can't really offer medical advice but we can help you identify the kinds of questions you may want to ask and give you our experiences with our procedures. I am of the belief that if you are not comfortable asking questions of your doctor, then you should definitely find another doctor. One of the reasons I ended up choosing my surgeon was because I felt that he welcomed my questions and was open to being challenged and having to justify the "whys" of the surgery. Remember that after the surgery you may be in need of his guidance and his availability in order to get answers so if he is not open to questions now, then keep in mind that you can look to another provider that might be more open to your questions.

As far as driving, I think I was told not to drive for a week (or until the catheter came out).. But I believe I did drive to the doctor the following week by myself to my appointment to get the catheter removed. I could have driven the following day if I had to but with a catheter, you don't really want to go out and about too much and so I didn't. I did not have a significant amount of bleeding at all. The worst pain I had was when they took the little drain tube out of my stomach (remember I had the laproscopic surgery). This tube was used for any bleeding that did occur within the first few days after surgery. It was really very light and more oozing than bleeding.

With regard to pain, I have a lot worse pain from my back on a daily basis than I had from this surgery. I was given opioids for pain along with tylenol. I also take gabapentin on a regular basis for the nerve pain in my back and so I was given that in the hospital and afterwards as well.

@ggm43 I think it would be such an important thing for you to sit down with your doctor or a nurse who works with him and is familiar with the specific procedure you are having and ask your questions. You are entitled to answers so that you can make an informed decision about your procedure. If you have a good friend or family member who can accompany you, then I would take them with you. They can both help you clarify the issues you need answers to and help you remember what is said and/or take notes. Again it is very normal to be frightened about an upcoming medical procedure but I think you can go a long way to alleviating some of your fear by asking people like us and your doctor about the questions you have. That is why we are here and that is why your doctor is there as well.
Best,
@baxtersmom

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@ggm43

I AM VERY FRIGHTENED ABOUT UPCOMING SURGERY, WHEN U SAY THE NEW MESH, IS THAT AVAILABLE NOW TO ALL DRS? DO U KNOW WHAT IT IS CALLED AND DID HE MAKE A SLING? WERE U HAVING INCONTIENCE PRIOR? SORRY FOR ALL THE QUESTIONS BUT I NEED SOME ANSWERS DESPERATELY. ALSO, DID U HAVE ALOT OF BLEEDING AND PAIN AFTERWARDS AND HOW LONG BEFORE U COULD DRIVE? THANKS FOR A REPLY. GGM

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I don't think the old mesh has been used for 10 years. Goggle all the lawsuits and believe it is no longer available. After you do your homework ask you doctor or his nurse to explain, as they would have the most accurate information, also confirm they are using the "new mesh".
The sling is an appliance, that is ordered and it is fit to lift up the urethra.
I never had leakage,other than if I sneezed hard. Yet I was needing to go to the bathroom frequently. If I went shopping, I knew where the bathrooms were in each store, probably stopping every hour to go pee.
My main issue was like Gail's, my prolapse was the main problem. One day I was fine, then crazy me I love to build rock walls and went on rock hunt and lifted a rock bigger than I should have (which I had been doing since I was 19 and had this surgery at age 67 which was 3 years ago) while showering afterward I was shocked. Between my legs it looked like I had a penis. Hanging down was my uterus. Plus the bladder and colon was loosened I learned Even after hysterectomy and supposed bladder tie up I felt something level with my vulva and not contained inside of the vulva. Noticeable if I walked and it felt weird. That was my bladder. I couldn't accept living like this.

I did spend one night in the hospital. With the mesh surgery maybe I had some bleeding but can't remember because recovery was no big deal. As mentioned the bladder repair surgery is dramatically less miserable than a hysterectomy. The hysterectomy recovery was harder than I expected. When home take your pain pills , I used hydrocodone, strong drug which I have used before with hysterectomy for over 6 weeks without any addiction and with your pain pills and maybe a tranquilizer lay around and space out and watch recorded programs on your TV. With pain meds I don't feel like reading as it is hard to concentrate. I was driving in a few weeks and off pain pills by then.
By the way, I am still a rock hound and just finished a new section of a dry stack wall and yes I still build with rocks bigger than I should and nothing is hanging loose down there. So worth it for me to do the surgery.

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Yes @gardeningjunkie, you and I must both have interesting backyards as I hauled what we figured out was over 18000 pounds of rocks in one weekend alone to build some pathways and seating in my backyard. Not to mention I had been doing things like this for years. I also have another hernia (hiatal hernia) which I have had dating back to at least the early 2000s (at least that is when it was first detected). My urogynecologist asked me if I had any other hernias since I had no children. Women who have experienced childbirth are more prone to prolapse so they say. He said either I had tissue that tended to be somewhat elastic or easily weakened, or I had overdone the heavy lifting over time or both. Early on, I was just wanting to know the cause of my prolapse as it seemed to happen overnight and I discovered it while showering..

And everyone, please, ask questions of your doctors. Do not treat them like they should not be questioned. They should welcome patients who want to understand their conditions.

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thanks to the all the women who answered my text. all of the advice was sound and to the point. the problem is me. I have a severe anxiety disorder especially when it is body related. that is why I am thinking I don't know if I can go through it or not. I tend to panic at most bodily disorders and discomfort. I think this will be very traumatic for me. I am seeing my dr. on the 25th of march and surgery is scheduled for april 2nd. so I will have to discuss it further with him and ask all my questions at that time. will keep u posted. believe me, I am not shy about asking questions.

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@contentandwell

@sulli The main products that I am aware of are various medications that help with urinary incontinence. There is a device that is not widely available, I believe that's for fecal incontinence. For urinary incontinence, there is a device called a "sling". I knew one woman who said it was a Godsend, but others who don't feel it helped much.
I'm not sure what you mean by a "pushy experience". Could you please elaborate a bit?
Thanks.

@coralbells1 I too recently had pelvic floor physical therapy. referred by a urogynecologist at a major teaching hospital. It definitely did help, but I have not seen as much improvement as you have. I can now "hold it" better than I used to, but I still wake up numerous times a night for bathroom calls. I have fewer problems during the day, particularly "latch key incontinence", a specific type of urge incontinence.

@mslw I believe it's always a good idea to get a second opinion with someone outside of where you received the first opinion. Good advice for this and for anything where you want a second opinion.

@baxtersmom Your surgery was Sacrocolpopexy for prolapse. Am I correct in thinking that your prolapse was more than typical incontinence? I'm just trying to figure out my potential options, if I do proceed further. Thanks.
Also, I thought I was spelling your name correctly but for some reason it was not picked up by the system as it usually is.
JK

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I forgot to mention I asked for that procedure because I am older and do not intend to have any sexual activities in the future and it is supposed to be the easiest of the fixes. ggm I think it is know as a vaginectomy.

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@ggm43

thanks to the all the women who answered my text. all of the advice was sound and to the point. the problem is me. I have a severe anxiety disorder especially when it is body related. that is why I am thinking I don't know if I can go through it or not. I tend to panic at most bodily disorders and discomfort. I think this will be very traumatic for me. I am seeing my dr. on the 25th of march and surgery is scheduled for april 2nd. so I will have to discuss it further with him and ask all my questions at that time. will keep u posted. believe me, I am not shy about asking questions.

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Hi, @ggm43 – glad to hear the members in this discussion have been helpful to you.

I also wanted to point out you might check out the discussions in the Connect Depression & Anxiety group https://connect.mayoclinic.org/group/depression-anxiety/

Best of luck as you meet with your doctor and move toward surgery. I trust your doctor will walk with you through any trepidation and anxiety symptoms and provide any needed medical attention to that in this process.

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@mslw

Thank you for so much good information and advice!
I will look at WholeWoman.com and be mindful of what you wrote re: surgery if (when?) my prolapse is worse.
…think we also have some orthopedic problems in common, i.e., scoliosis and ankle issues, so I will read your posts on those subjects too.

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Hi, @mslw – you may also want to check out the Connect Bones, Joints & Muscles group https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

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