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Pelvic Organ Prolapse (MUST READ)
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Pelvic Organ Prolapse (MUST READ)

Ladies/Gentlemen I don't have a question so much as it is a statement.  If you don't have a copy of  Sherrie J. Palms book, "Pelvic Organ Prolapse, The Silent Epidemic," please get it.  I ordered mine from Amazon.com.  You will be amazed at the knowledge she has compiled and the "hands on" advice she gives is superb for the "before and after" surgery questions/care because she has lived through it.  Reading her book was like having one of Oprah's "AHA MOMENTS."  I've marked, highlighted, and made comments in the margins of most of the pages as it related to me.  It was like I was walking in her footsteps.  

I am 60 and had a stage III Pelvic Organ Prolapse (POP).  I had my surgery (cystocele, rectocele and mid-urethral sling) on Jan 21, 2011.  I'd been diagnosed back in June 2010 by my gynecologist and referred to a urogynecologist at the Washington Hospital Center.  After a few visits and some urology tests, I was diagnosed with Stage III POP in July 2010.  Never heard of it!  Come to find out it was almost as common and "apple pie."  Women just did not want to talk about it because it was so embarrassing.  WELL I WANT TO SHOUT ABOUT IT!  I am 10 a year breast cancer survivor and I feel I'm a POP survivor too!

I was "flapping in the wind" trying to find as much information as I could about POP.  I was all over the internet trying to find information about it.  It was sheer luck that I stumbled upon Sherrie's first internet video.  She was asking the same questions I needed answers to regarding POP.  Some questions, I didn't even know I should be asking. She was starting a grassroots advocacy for women suffering with pelvic floor health issues. I followed every search engine leading to anything she had posted on the web.  I found a web page www.sherriepalm.com and found her book.  

Although I was extremely anxious to get the surgery done, I held off until because I had a pre-paid planned trip in late August 2010.  And I wanted to wait until after the holidays once I knew it was "life altering" and not a "life threatening" condition and the recovery period would be 6-8 weeks.  Although it sure felt like it was "life threatening" when I first heard the diagnosis. I wrote to Dr Oz and asked if he would do a segment on POP in late November 2010.  I gave him my surgery date in hopes that something would be aired before them.  The second week of Jan 2011 he did a segment on POP and it was titled "women suffering in silence."  I almost cried.  That's it in a nutshell so to speak.  I'm in my 5th week of recovery after surgery and doing fine thanks to my urogynecologist and Sherrie J. Palm's book (or should I say POP Bible).
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Yes, in general women do not share info with their husbands beyond that they have pain, there is so much stigma attached to symptoms POP. The more we spread the word, the more comfortable everyone will be with talking about it, even the "yikes" stuff.
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I sure appreciate the positive feedback but the most important thing here is you found info you  needed to help you through the process and get your questions answered. If every woman who learns she has POP finds the answers she needs and then pays it forward by telling other women, soon the grassroots movement will snowball and women around the world will become aware of pelvic organ prolapse-a health condition that has been on medical record since Egyptian times yet sadly still remains in the closet because the media won't touch a subject with such "yikes" symptoms. It's women like you that spread the word that help me help other women and for that I'll always be greatful. We are a huge club,women helping women.

:)
Sher
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This is wonderful!  I hope you make a web page so other women may contact you if they have questions.  I think you could help many women.  God bless.
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I'll send you a PM (private message). Yes, the more all of us spread the word, the more women are helped!
Sher
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I hope more women find the MedHelp page as well as Sherrie Palm's web site. I really like my urogynecologist and fell she has done a great job.  But the hands on info that Sherrie provides especially as it relates to the before/after surgery is awesome.  My anxiety about the "what and how' of Pelvic Organ Prolapse (POP) was calmed once I read her book.  I felt she was talking directly to me and walking me through I what I needed to know about POP.

Since my surgery, I have found quite a few women that have had this procedure.  I find they were not only "embarassed" about their situation, but that they did not know the various procedures they had were all related to POP.  I, too, found that to be true.  I never related baldder prolapse or vaginal proplapse to POP.  I certainly never heard of rectal prolapse or intestinal proplapse. So I think the more we (women/men) spread the word about POP the more "common" it will become known.  I include men because it affects them too when their wife or significant other has this problem.  I was taken aback when one of the women on the Dr. Oz show said, "to this day, I don't think my husband knew about it."
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Yes, in general women do not share info with their husbands beyond that they have pain, there is so much stigma attached to symptoms POP. The more we spread the word, the more comfortable everyone will be with talking about it, even the "yikes" stuff.
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It is so refreshing to hear a success surgery, I have read nothing but horrific experiences about prolapse surgeries that my mind is confused as to whether to go ahead and have cystocele and rectocele repair or whether to wait and see certainly your own experience is inspiring.  We need more prolapse awareness and this is what is lacking, even GP's do not discuss with women folk until something gives and not many people know of websites such as the Med Help I found it by searching and more searching on Prolapse.
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Yes we are trying hard to open the closet door on POP health, so common, so few women know about it. As we all pass our individual stories on to other women our grassroots movement to establish recongnition of pelvic organ prolapse issues will shift. There are many of us who have had success with our treatments, we all need to spread the word!

Many thanks to all of the women I've been privileged to know who have done just that!

Sher
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I am having problems and all the post seem to be very positive, I have had a UTI almost constantly since I had surgery in June of 2010, Sharp pain with urination not the same type with regular UTI and with a camera the doctor saw a very inflamed area on my bladder, since I have changed urologist we are having to investigate everything that happened during the surgery.  I have had all medical records transferred to the new urologist and now he's wanting to speak with the gynocologist who did his part since his records were a little sketchy.  If you have other women with the same or some ofthe same problems would love to hear if they got resolution or have had to have surgery again.
Thank you, Sharon
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The fact that a sketchy gynecologist did your repair increases my suspicions that something was not properly repaired during your procedures. I sent a link over for locating a urogyn, please try to go in this direction instead of urologist or other type of physician-they are them most familiar with pelvic floor anatomy and will be the most likely to be able to address the complications no  matter what they may be.

I'm hopeful you can get an appt quickly, let them know when you figure out who you want to see the degree of distress your body is in; it is important that they recognize that you need an appt quickly. If you choolse to go ahead with the urologist, ask if it is possible to consult with a urogyn so if there are any other POP issues  going on, they can be addressed at the same time as the repair is done on this complication. (Women often have more than one type of POP.)

Sher
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Good luck with this new forum.  Your work is paying off.
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Sent you email about all my problems back in March and now here it is the end of June and still not exactly sure why the inside of my bladder has inflammation in spots, had biopsy to make sure no cancer and none.  Now I'm going to have 6 sessions once a week of a coating put on the inside of the bladder hoping to stop the inflammation.  I saw my doctor yesterday and if this doesn't work the next alternative may be surgery, he's still not sure if maybe the sling inside of me may be rubbing against the outside of my bladder.  He and I both hope thats not so, because if I have surgery he's already told me it is quite an involved procedure.  If other women have had these problems after surgery would love to hear from them.  I'm getting a little tired of pain from inflammation and if I go off antibiotics for 5 to 10 days end up with UTI and more pain from inflammation.
Thanks, Shsully662
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Thanks hon! Things shift forward a little more each day!
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So glad to hear no cancer issues, gotta tell you I was a bit worried. Does he think it is rubbing from mesh or reaction to mesh? Some women who have allergic reaction have luck with antigen drops (for allergic reaction) from holistic practitioners, either naturopaths or MDs who dance both sides of the fence. Sure hope you get to the bottom of this soon. On-going pain gets old.
Please keep me in the loop!
Sher
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Following my POP surgery in January 2011, my urogynecologist thought I was having an allergic reaction to silver nitrate which was used to help heal my vaginal area.  Turns out  I was not allergic to silver nitrate.  I had a urinary tract infection (UTI) that was not reacting like a regular UTI.  I had no pain just a itching sensation and my crotch area was red.  I tried the usual vaginal itch creams until I got to my gynencologist.  He said to stop using the vaginal itch creams (I was using vagisil) because it usually made things worst.  He put me on a 3 day antibotic (antibiotic) treatment.   After that I called my urogynecologist and she recommended hydrocortisone cream.  I tried that for 3 days and it did not work.  I called my urogynecologist and she prescribed some Triamcinolone acetonide onitment and Hydroxyzine tablets for the itching which gave me relief, but after a few weeks I had another UTI. I was, also, prescribed estrace vaginal cream, but did not use it because I am a breast cancer survivor and the manufacture recommends against using it because of the estrogen in the product.   After an emergency room visit over the July 4th holiday (all of my doctors were out of town for the holiday) I was put on a 3 day antibotic (antibiotic) treatment again.  I finally went back to my urogynecologist and was put on a 6 month low dose antibotic (antibiotic) with cranberry pills (never knew there were cranberry pills).  Apparently, my bladder was not emptying completely.  She, also, recommended I lean forward a little when urinating to help empty the bladder more.  Things seem to be OK since my last appointment in August 2011.  I'm hoping it's not an allergic reaction to the mesh with all the stories surfacing about the transvaginal mesh surgeries.  I had a laproscopic procedure which included a urethral sling.  We'll see what happens when the 6 months are up in Jan 2012. The good thing about having my surgery done by a urogynecologist is that she did everything.  (I had a laparoscopic sacral colpopexy, rectocele repair, and mid-urethral sling procedure.)  Let's keep each other posted!
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It is so significant that each of us who have experienced POP share our personal insights, we are all in this together and as this post shows, just because you've had surgery or treatment for POP the story does not end. We each continue to shift forward and from time to time there  may be a new chapter to our stories that can provide valuable insights to others in their journeys. Thanks for sharing MCFOR! And great job pursuing an answer until you found the right treatment! When the 1st treatment does not do the trick for you whether major POP treatment or followup after the fact, don't give up-there are always answers-we just have to keep looking until we find them.
Sher
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I had surgery two and half years ago, i rarely saw the doctor only his pa. He does not answer questions is very vague. I had a bladder lift with a sling put on my uretha  I am now having problems with my bladder lift. I went back to him and the office didn't even know i was a prior patient after i was in surgery for 8 hours. During my examine he was very rough and it was extremely painful enough to make me cry and have bleeding. He now says my problems could be from a stitch coming through my vaginal wall and wants to reschedule a surgery but no other explanation. Needless to say I am getting a second opinion. I am at the point where sex is very painful and I bleed. I have also started having bladder infections and incontience again. I have to lean forward to even pee. I also have developed nueropathy and they cant figure out why. I have not been able to work since april of this year. I would not recommend anyone to get the mesh put in. Any help you could provide me would be helpful I have contacted an attorney for help because I dont know what to do. Thanks
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Thank you for sharing your story with us, I'm so sorry to hear about the treatment (or should I say lack of) you received. There is no excuse for this kind of behavior from a healthcare professional (or anyone else for that matter), it is inexcusable! With a surgery this significant, I always recommend women seek counsel with a urogynecologist or a urologist who specializes in pelvic floor-the area is so intricate that it truly takes an expert to get it right!

Mesh placement is extremely specific, it needs to be placed in the right spot, attached properly, the area it is attached to needs to be prepped properly and it needs to be the right tension when talking sling. You should absolutely see a different physician, is the dr who did the sling  a urogyn? I assume not and encourage you to see a specialist for your complications.

Why did your surgery take 8 hours? I had surgery for 3 types of POP and mesh was used for 2 of them and the procedure took less than 2 hours, that sounds yikes right off the bat-makes me wonder if the dr did the procedure or a student dr did it.

Please keep me in the loop with this path, I'm hopeful you'll find some answers soon.

Sher
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Sherri,
Yes he is a urogyn his name is Micheal P Feloney out of omaha ne. He is suppose to be a specialist in female reconstruction. I now have another UTI the third in two months. I go to another urogyn on the 13th of dec. To see what she has to say. It is a Dr. Rebecca J. Mccrery, in omaha.   Believe me when i say i only have given you a short explanation of what happened with my surgery. I am just so frustrated with all of this and trying to get answers. I have heard that sometimes the mesh can not be completely removed and that some women never get rid of the pain they suffer. I have know idea why my surgery took 8 hours but i went in at 7 am got to my room at 9 pm that night the surgical waiting area had been closed and my husband and daughter where left there with no updates the whole day. When I awoke in my room I asked where my husband was and had to have the nurse call my husband on his cell phone and he was still down there waiting to here something. I have complained to the hospital at the time of surgery and about my last visit. But dont get much from them. How much if anything do you know about these lawsuits against the manufacturers of these products? Also what questions should I be asking when I go to get second opinion form this other doctor? Thanks for your help Cindy
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What a horrific situation, I looked up Dr. Feloney's ratings on some watchdog sites and it sure doesn't look very good. It also gives me pause when POP procedures are done by a physician affiliated with a teaching hospital; I wonder about women being guinea pigs for students. At the right location it is ok because the student drs are well supervised but with this Dr's rating I'm guessing that may have been the case.

Step one is get a copy of the hospital records from your procedure so you can read what occurred to cause such a long procedure (if they give you a hard time DEMAND them, it's your right as a patient). It's a bit scary that your family was not told anything during this time frame, a huge flag about the quality of care at the hospital so this is not just physician flaw, it is hospital administration as well.

I don't know much about lawsuits with mesh manufacturers other than it's a huge controversy right now, in my eyes the problem is not the mesh, it's how the mesh is put in-I feel only board  fellowship certified urogyns and urologists should be allowed to use mesh for POP procedures.

Dr. Mccrery has an excellent rating, I feel you have made a good choice with her. Ask her she feels the mesh needs to be removed to eliminate the symptoms you are having and if so can she get it all out. It may be possible for her to adjust the mesh to make it work properly (the problem with no mesh is the symptoms you had prior to surgery will come back and you may need repeat surgery for same symptoms). Having a stitch trimmed is something that occurs once in a while but it is good  you did not have it done by the 1st dr, as insensitive as he is to patients needs, he would have caused pain for sure.

I'm sure with the rating this 2nd dr has she will guide you through the right treatment to correct what the 1st dr did. It is hard to trust when you've been burned as badly as you have but I feel this other dr will get things leveled off for you. Please keep me in the loop with how things go Cindy.

Sher
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Thanks for your help I will let you know what happens at my apt on the 13th.
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Thank you, I'm so hopeful you will find some answers!

Sher
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Went to doctor for second opinion yesterday. She says my mesh is coming through my vaginal wall. She is going to do a few test and wants to look in my bladder to make sure it is not coming through my bladder also. Before she schedules surgery. She said that the surgery as it looks now will be to remove part of the mesh and sew my vaginal wall back up. Part of test will also be to see if she needs to repair the sling on my urethea. Since I am going to phx for christmas we have scheduled the test for the first of feb. So I can only hope this fixes my issues. I told her what the other doctor had said and she didn't give much of a response only that she would look her self to determine if it was a stitch.  i think my original doctor was just trying to cover his ***. I wil let you know if I find out anything else.
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So glad you got confirmation on issues, what she is proposing sounds spot on. Drs seldom say anything negative about each other so no shock that she didn't react much but I agree with you totally. Inside the cirle they do talk though and often are already aware of physicians in their area that do poor work.

Yes please keep me in the loop. I'm so happy you now have some reasonable information and a path for improvement.

Sher
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well test are done have surgery scheduled for march 29th.she is going to remove part of mesh and try to fix the stitches which are going through my bladder. So hope it all goes well. I have contacted an attorneys office which has offered to take my case. I think what these mesh companies our doing is wrong. It seemed like they could fix all my problems but now there is a chance my incontience could be worse after surgery then it was before. Also there is a chance when trying to remove the stuff coming through my bladder they could put a whole in it. Also there is a chance I will have to have a second surgery!!
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I sure hope one surgery will get your pelvic cavity balanced. I truly wish the FDA or the AMA would establish guidelines for who gets to perform POP mesh procedures-most complications could be avoided if only fellowship trained urogyns and urologists were allowed to do them..

Good luck, let me know how surgery goes.
Sher
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I am will look for the book for sure!!

Do you know if Dr Oz will re air that episode or if there is a place online we could watch it?
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Is the book available for Kindle readers?
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Skip the Dr Oz piece, so much misinformation on it-there is a link to the PBS piece that is well done on APOPS homepage-you can watch the entire clip.
http://pelvicorganprolapsesupport.org/

The book is not in Kindle form yet but 2nd edition will be out soon and it will be. You can access free chapter on symptoms on the APOPS website as well.

Sher
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I will watch that one instead. :)

I just ordered your book today from amazon. Cant wait to read it.
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Sherrie;
I am terrified to have the surgeries that you all discuss.  I have been dealing with POP for close to ten years and even though my life and activities have been compromised I do not have the pain and problems discussed in the previous comments.  I have been following the information on the wholewoman.com website which concentrates on lifestyle and exercise while living with this issue rather than compromising the support and structure of the pelvic floor with POP surgeries.  However, I continue to do research as I would like to get my life back and did visit Dr's Miklos and Moore in the Atlanta area this past fall, who are considered the best surgeons in the field of pelvic reconstruction. Are you familiar with them?  
I do appreciate the information on the Whole Woman website, but I have been looking for a forum to discuss the positives and negatives of POP surgeries.  Thanks for your work in this field, and hope the women here will continue to share their experiences and recommendations.  
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It is important to confirm for women who  have great fear of POP surgery that no one has to have surgery; it is absolutely personal choice. Typically women with grade 1 or 2 will utilize a couple of different treatment modems to find balance, more common to see surgery in grades 3 & 4 (but not all women even in grade 4 have surgery-again personal choice). I truly like to see all women explore treatments ideally with a PT first to see what they can do to  help themselves b/4 jumping to the surgery page. It was a pretty quick decision for me but I was diagnosed at grade 3 with 3 types.

It is important to have a definitive diagnosis of type and degree of POP so you know how best to help yourself-since there are 5 types of POP and 4 grades of severity, each of us with unique job/family scenarios, everyone has a bit different dynamic.

I am familiar with Miklos and Moore, they are supposed to be some of the best, but I have a problem with the fact that they want payment up front. A bit yikes in my book. Not crazy about the wholewoman regimen either, Tasha Mulligan's hab-it is a great exercise program-she is a PT, a triathelete, a mother, she has a great handle on what to do to rebuild your base.

So important for each of us to do our homework, I'm always glad to hear from women who keep digging for answers.
Sher
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Good evening ladies. I think i have POP my GYN said i do not. I have pain very low in my abdomin (abdomen) and lower back. To sleep i have to take 800mg of Motrin and 2-3 benadryl and alternating a heating pad from abdomin (abdomen) to back. The dr did a pelvic exam while i was laying down.

When sitting on the floor playing with my toddler if i lean fwd i feel like something is popping out, leaning back reverses the popping out feeling.  I cannot empty my anything on the first try. I also have sharp pain just above the inside of my left hip.  The dr said a plessary wouldnt help and all these issues are from my birthcontrol. All he kept saying was "your cervix is fine" he didnt answer my questions. Did he miss the obvious? There is a multitude of other issues as well.
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With the symptoms you have I would recommend you see a Urogynecologist as they specialise in POP.  A second opinion would be a good idea anyway.  Many of us with POP get varying diagnosis from the Drs we see and even some of the Urogynes as well.  Dont be put off from moving on and finding out more and remember that a diagnosis is an opinion and since you still have your symptoms and no answers so far, consider that you on your own journey to find out all you need to know.

Your symptoms do sound like POP to me and there are different prolapses.  Uterine, cystocele ( bladder ), uretherocele ( urethra ), rectocele ( bowel side, into vagina ) vaginal vault prolapse ( this happens if your vaginal cuff prolapses after a hysterectomy etc ) and enterocele ( small bowel) .  

Interestingly your GYN said that your cervix is fine, but what about the walls of your vagina and other organs that can prolapse into the vagina?  Having symptoms like the ones you are having need to be fully diagnosed and explained.  Many of us feel fobbed off by the very drs we hope will listen and help us, but this is really telling us we need to move on and find another Dr who can help.  

Consider a second opinion and let us know how you get on.  
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About three years ago I had a rectocele which failed.  Since then I have worn a pessary.  It is comfortable, however I get pressure sores.  I am in the second extended period of having to leave the pessary out for the sore to heal.  I am interested in whether you have experience with this issue.  Thank you.
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Do you use any estrogen cream?  You would need to see your Dr to make sure you are able to use the cream if you dont already use it.  Estrogen cream can help to maintain vaginal skin.  Also, what kind of pessary are you using?  Are you able to take it out yourself?

I also have a rectocele as well as other prolapses and wear a pessary.  My pessary is made out of silicone and I take it out at night.  There are more problems with pessaries that are worn continuously for prolonged periods of time with regards to sores vaginally.

I hope this helps
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Sherrie,  can you tell me what watchdog sites I can check before I choose a urogynecologist?
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