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Guidance is Available For Women With Pelvic Organ Prolapse

Apr 06, 2010 - 34 comments
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pelvic organ prolapse

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APOPS

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Urogynecology Community

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Urogynecology Forum

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Pelvic organ prolapse forum

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pop



Every day men and women are diagnosed with health issues that they may have heard of but know little about. Every day countless individuals search for answers to help themselves come to terms with these health issues.  Fortunately in today’s cyber world, health information is much more accessible than it was years ago. Support structures for an abundance of diseases and syndromes are the norm, specialists within health fields help us narrow down our choices for treatment. Unfortunately for women with pelvic organ prolapse, symptoms that create a scenario of embarrassment as well as discomfort lend themselves to a hidden world of suffering that often goes on for years while this health condition progresses, impacting women from every angle, physical, social, sexual, emotional, and financial.

When I was first diagnosed with pelvic organ prolapse, I’d never heard of it. I’d never heard of urogynecologists, physicians who are the specialist for this health condition. I’d never heard of a pessary, a commonly used treatment device for POP. As a woman who had spent the bulk of her life researching aspects of health and being pro-active with her own, I was shocked to be diagnosed with a condition that I’d never heard of. I was frustrated. I was angry. As soon as I got home from that initial diagnosis, I started doing what I do best, researching. As I researched, I kept coming across the same phrase; it’s so common, it’s so common, it’s so common. If pelvic organ prolapse is so common, how come I’d never heard of it despite years of researching health issues? I knew immediately that I needed to write a book about pelvic organ prolapse so that other women in my position would have access to all of the information they needed to understand the causes, symptoms, and treatment options available for POP.

Pelvic organ prolapse is an extremely common female health issue that half of women over the age of 50 will experience; many younger women in their 30’s and 40’s have POP as well. Symptoms like urinary incontinence, fecal incontinence, urine retention, abdominal pain, back pain, vaginal or rectal pressure, constipation, and painful intercourse are aspects of POP that women frequently experience. Because many of the symptoms of POP are too embarrassing to disclose to anyone, women suffer in silence while the condition progresses. I hear stories from women all the time that sound so familiar,  women with fear, panic, anxiety, and physical pain in their voices. Many women worry about their relationship with their husbands, fearful that symptoms of POP will impact that relationship. Often women are too embarrassed to leave the house or attend a social gathering, apprehensive that POP issues will create an embarrassing situation for them in a public setting.  We need to take pelvic organ prolapse out of the closet; women need to know that there are others experiencing the same symptoms, get a dialogue started, create a comfort zone so that women feel free to communicate these symptoms to their physicians to access treatment as well as enable them to connect with their husbands or significant others about what is happening within their bodies.

I’ve been so fortunate to have the opportunity to speak with many women about POP over the past year. It amazes me every day just how few women are familiar with pelvic organ prolapse and how often women that have heard of POP are misinformed. So much still needs to be done to create a realistic awareness pocket. POP is not an American women’s health issue, it is a global women’s health issue. Although statistics indicate that this health issue is more common in the 50+ category, I speak with too many women in their 30’s and 40’s to believe this is a health issue that occurs in mature women only. We need to change the awareness curve so that ALL women become familiar with the symptoms of POP at a much younger age; this will increase detection of pelvic organ prolapse and women who recognize signs can seek earlier, less aggressive treatment.

I try to utilize every tool I have access to in my quest to help women recognize and become familiar with POP. MedHelp.org graciously extended a hand to me in my quest; I am delighted to be a part of this inspiring community of health care advocates and professionals. I proudly tell people I meet that I affiliate with this amazing organization and truly believe that my connection to Medhelp.org will be a fruitful partnership in creating much needed awareness about pelvic organ prolapse, a health issue that far too many women don’t recognize and many that do have no idea what their treatment options are. I’m hopeful that women will find the Urogynecology Community that MedHelp.org has allowed me to establish a place to go to for the POP answers they seek. As this community evolves and grows, members will do what they do in other MedHelp Communities, reach out to each other with support and advice. Feedback between members of the health communities at MedHelp.org is as vital to the support aspect of these communities as it is for the health advice given. I am also hopeful that we can integrate APOPS groups (The Association for Pelvic Organ Prolapse Support, a network of live, local support groups that I hope to assimilate with Medhelp.org) into user groups within the Medhelp community to enable the women within local regions to more easily share info with each other. If you'd like to join our POP community at the Urogynecology Forum or have a question or comment you'd like to post about pelvic organ prolapse, click on the link below.

                                              http://www.medhelp.org/forums/Urogynecology/show/743

                                      NO ONE CAN HELP US AS MUCH AS WE CAN HELP OURSELVES


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139792 tn?1447663565
by Dalubaba, Apr 20, 2010
I understand kegel exercises are meant to help the patient of POP. This can work as a preventive exercise as well.One can do these exercises any time anywhere as no body will know that you are doing exercises.

Avatar universal
by PeanutBeansMom, Apr 20, 2010
My mother suffered prolapsed bladder. She felt like to had to urinate all the time, and experienced vaginal irritations to go with it. She didn't know what was wrong, and traditional gynocology and urology were failing her. After trying all kinds of pessaries and devices, she finally found a doctor who could help her. She had surgery a year ago, where they stitched in a permanent mesh that acts as a hammock, holding the bladder in it's proper place. This one-day surgery was 100% successful, and this horribly uncomfortable condition no longer bothers her. The doctor that performed this was specifically a gyno-urologist at Hackensack Hosp in NJ; I believe his name was Dr. Bazralian. I hope this post helps at least one person get the relief they need.

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Thanks so much for your thoughts Dalubaba & PeanutBeansMom, any and all info we share with each other helps shine light on aspects of POP! Yes, Kegels are very important, equally important is that they be done properly to be effective. And your comments about  physicians not knowing what was wrong with your mom PeanutBeansMom are comments I hear all the time-many women go undiagnosed or misdiagnosed for long periods of time, shifting from physician to physician trying to find answers. I really try to get the message out that women should seek help from a urogynecologist, these are pelvic floor specialists. Thanks to both of you for sharing your insights!
Sher

Avatar universal
by jaycee30581, Apr 20, 2010
I have had five repairs over several years and do not feel any better.  My urogynaecologist gave me only a 60% chance of the last one being effective.  I do my kegel excercises every day but the dragging, falling down  feeling is driving me nuts!

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Do you still feel like your bottom end is falling out? How long ago was your last surgery jaycee? I hope you did all of the right stuff post surgeries (it is so important to not lift anything for quite a while after surgeries or it can undo the repairs!), we are always so tempted to lift our babies and grandbabies. Send me more details on the forum or a PM and I'll send you my thoughts!


Avatar universal
by Bettylue, Apr 20, 2010
I am interested in knowing the negatives about this one day "mesh" surgery. I had a pessary inserted and it made me like totally incontinent , also it was very uncomfortable.. Had to quit.

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
I encourage everyone to post thoughts/questions to the  urogynecology forum, I don't know if others will know to look in the journal section for postings and you all have topics that others might want to comment on as well as gain insight from.

Bettylue, I'll get back to you with thoughts this afternoon, hang tight!
Sher

Avatar universal
by Freshbreath, Apr 20, 2010
When you don't know how to exercise 5 days a week from the time you reach adulthood your muscular structures will deteriorate. You become FLABBY, not only externally, but also internally.

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Right on the money Freshbreath, muscle tissue is muscle tissue, it all gets weak no matter whether it's internal or external if it's not exercised. Physicians should really be educating women about doing Kegel's from the time of their first pelvic exam on!


809033 tn?1271794867
by lilywinston, Apr 20, 2010
Hi, I currently have a cystocele, rectocele and a prolapsed bladder (apparently it's a grade 2 prolapse??). In June of 2008 I had a ripstein rectopexy, which is a surgery for rectal prolapse or what I called an internal renovation when asked about the surgery by people I wasn't comfortable giving details to. During the surgery a mesh was placed around the colon & part of the bowel to keep it in place. I guess at the time my bladder was in the right spot because nothing was done with it. I should also add that I had a hysterectomy in June 2005, and I was also told that part of my problems stem from a difficult childbirth almost 20 yrs ago (she was sideways). I've been doing Keigles for years and nothing seems to be helping. My uro & my gyno are debating what to do with me & when. It's so frustrating to feel like I'm being shuffled from one doctor to the next

Avatar universal
by barbaramroberts, Apr 20, 2010
Hi there,  I had been feeling alot of pressure in my lower abdomen and upon examination by a doctor was told the muscles that once held up my bladder had become very weak and the bladder had dropped and the inner lining was very thin....it was a very uncomfortable feeling,  like my insides were dropping out through my vagina...I had a complete hysterectomy in 1995 and had been on natural estrogen/progesterin/testosterone....I really had no problem until I went off the natural hormones altogether....The doctor suggested that I use Vagifem which is an estrogen tablet that is inserted into the vagina twice a week....there was a significant difference and I feel those muscles that were holding up my bladder seem to have stengthened again...not perfect,  but I feel comfortable now.

707563 tn?1455827280
by Emily_MHManager, Apr 20, 2010
Hi everyone -

SherrieP will be able to answer your questions in the urogynecology forum.  Please post your questions there, and not here.

Just click this link - http://www.medhelp.org/forums/Urogynecology/show/743

Thanks!

Emily
MedHelp

Avatar universal
by ducatelli, Apr 20, 2010
Hi,

I have cystocele.rectocele.&entrocyle. stage 4.. I had a internal external hemmeroidectomy 2 years ago, and that is when all my issues started. Prudential nerve intrapment as well as sooo much pain. I have had all the tests, pt & 4 different docyors. after alot of conversations with physcians I have discovered that there is a device called a muscele contractor that is sold for 89.00 from Medical Products in Connecticut.I use this now daily it does the muscele contractions for me I am also wearing a v brace to hold all the organs  in. I am a work in progress at 58. I am determined to do the work myself to heal & recover. I have not seen or heard any good reports other than multiple surgeries, over & over again. I hope this helps .

Kathleen Ducatelli
New Hampshire

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Hi lilywinston,

Actually the difficult labor you had 20 years ago probably was the start of your POP issues, childbirth is the leading cause of POP followed by menopause in 2nd place. There are many aspects of the childbirth process that predispose women to POP. Very often the POP is not obvious until 20 years later because we simply are not aware of what the warning signs are (refer to my post on the Urogynecology Forum titled Pelvic Organ Prolapse Symptoms for  more info), this is information that we truly need to create some awareness about at a much younger age. The cystocele and the prolapsed bladder are the same thing so it sounds like you have 2 types of POP (there are 5 types). Kegels are one of the important treatment modems used for POP, especially at stages 1 and 2, but many women are not instructed properly in the correct way to do them; if not done the right way they aren't as effective. If you have been seeing a urologist and a gynecologist rather than a urogynecologist (specialist for pelvic floor issues), it would be a good idea to have an exam by one of these specialists. Urologists and gynecologists are wonderful physicians for their areas of expertise but the pelvic floor is extremely intricate, there's much more to it than just the organs involved. I know of many women who have had more than one surgery for POP but they typically aren't women who have seen urogynecologists. I highly recommend you check out this path, if you have difficulty locating one in your area, send me a PM (private message) and explain to you how to find one.

Good luck, I hope you get this resolved!

Sher

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Hi Barbaramroberts,

I'm curious why you went off of hormones, have you ever tried bio-identical hormones? (Natural hormone replacement therapy.) Was there vaginal tissue atrophy after you stopped using them and that is why you were put on Vagifem? Estrogen loss with menopause (even the drop in peri-menopause) is the second leading cause of POP; the impact to muscle tissue strength can be pretty radical sometimes. Since the PC muscle (the "hammock" muscle that holds the pelvic organs up) needs to be in good shape to be effective, just like any other muscle, the loss of estrogen creates a situation where it can no longer effectively do its job. Does your physician moniter your estrogen level? Testosterone therapy in small amounts for women is also beneficial for muscle strength so I am curious why you were taken off of this; it also would impact the strength of the PC muscle. I am glad that you have regained some strength of your PC,  please stay on top of it and pay attention to symptoms so you are aware if it starts to get worse. (Refer to the post on the Urogynecology Forum, Pelvic Organ Prolapse Symptoms.) If things get worse please flag your physician right away so POP does not progress. Thanks for sharing your info and good luck!

Sher

1128665 tn?1269277071
by sherrieP, Apr 20, 2010
Hi ducatelli,

Sounds like you have been through the ringer! At stage 4, I give you boatloads of credit for your determination to do all the necessary stuff to help yourself!  (As a 56 year old, I'd like to add that baby boomers rock!!!!!) I had surgery for grade 3 rectocele, cystocele, and enterocele and am pleased to report that it was a one time surgery and I have not and do not intend to have additional surgeries. I make sure I do all of the maintenance (it is just as important after surgery as it is for those who do it for prevention/maintenance). Since you a have been to so many drs, I assume you have seen at least one urogynecologist and probably the reason you don't want surgery at stage 4 is that you are worrried about needing additional surgeries. Probably the 3 biggest reasons women need additional surgeries is they lift heavy stuff too soon (like babies and grandbabies!), they have surgery performed by a physician other than a urogyn, (that is not to say that there are no 2nd surgeries for POP if a urogyn does it, its just less likely), and they don't do any maintenance post surgery. Muscle tissue is muscle tissue, if you don't use it you lose it, that goes for the PC muscle too!

Can you send me a PM (private message) with a link or more info on that product you are using, I did a search engine and could not find anything on it; I'm always curious about treatment modems and like to explore all new avenues.

Good luck to you and thanks so much for your insights!

Sher

809033 tn?1271794867
by lilywinston, Apr 20, 2010
Hi, I currently have a cystocele, rectocele and a prolapsed bladder (apparently it's a grade 2 prolapse??). In June of 2008 I had a ripstein rectopexy, which is a surgery for rectal prolapse or what I called an internal renovation when asked about the surgery by people I wasn't comfortable giving details to. During the surgery a mesh was placed around the colon & part of the bowel to keep it in place. I guess at the time my bladder was in the right spot because nothing was done with it. I should also add that I had a hysterectomy in June 2005, and I was also told that part of my problems stem from a difficult childbirth almost 20 yrs ago (she was sideways). I've been doing Keigles for years and nothing seems to be helping. My uro & my gyno are debating what to do with me & when. It's so frustrating to feel like I'm being shuffled from one doctor to the next

Avatar universal
by flathead, Apr 25, 2010
What are Kegel exercises?? PLEASE!! what site can I go to to SEE these exercises sufficently explained?

1128665 tn?1269277071
by sherrieP, Apr 25, 2010
Hi flathead, can you post this question to the Urogynecology forum at the link below? I won't be able to get back to you until probably tomorrow some time but I promise I'll get a clear answer to you very soon! I believe I posted some info on them already, I'll look over the forum a bit to see if I can find the post and give you that link as well. Hang tight, I'll have those links to you shortly!

Sher

1128665 tn?1269277071
by sherrieP, Apr 25, 2010
Here's the link for the forum in general.

http://www.medhelp.org/forums/Urogynecology/show/743?camp=msc&personal_page_id=908343


Sher



1128665 tn?1269277071
by sherrieP, Apr 25, 2010
I can't find the info I want, I may have posted it to my twitter/FB accounts (there was a really good article I passed on), will look for it and if I can't find it I'll send you a PM with basics after I get done with dinner.

Hang in there, info is on the way!

Sher

1128665 tn?1269277071
by sherrieP, Apr 26, 2010
Since there is so much info out there about Kegels and they work, they don't work, hard to figure out what to believe, I'm putting together a complete article about the entire Kegel path. I should have it posted by the end of the day. It will include all techniques of Kegels as well as some insights into why to do them. I'll send you a PM once I have it posted.
Sher

1128665 tn?1269277071
by sherrieP, Apr 26, 2010
Hi flathead, finally got the article finished and posted, here's the link! If you can't access it tonight, give it a shot tomorrow, it may still be getting set up.

http://www.medhelp.org/health_pages/Womens%20Health/KEGELS-AND-KEGEL-BREATHING/create/1133?cid=591&edit=1

Sher

Avatar universal
by Terri824, Sep 17, 2010
I am curious what you think about the Myself pelvic muscle trainer.  I see that there are several different trainers available today. I have a rectocele, my doctor considers it "medium", whatever that means. I called and spoke with the nurse at my Gyns office and she said that my doctor does not recommend any of the devices, he recommends surgery. Well, I prefer to try to do something for myself, something that's not invasive. At 64, I'm not real thrilled about going under the knife.
Also when I wrote to the Myself manufactuers they suggested that I talk with my doctor since the device is recommended for urinary problems rather than the prolapse issue that I have.
Your input would be appreciated.

Terri

1128665 tn?1269277071
by sherrieP, Sep 17, 2010
Hi Terri, I am happy to hear that you want to explore options. I feel all women should be fully imformed about choices prior to making the decsion to have surgery. Since this is an important POP issue, can you do me a favor and post a question on the Urogynecology Forum, I feel my reply is information many women  may be looking for. I've experimented with a few different devices and can offer some insights. If you'd prefer me to send you a direct message, I can do that as well, but many women do not see the info posted on this page. I'll be at my desk shortly to answer questions posted to forum and generally check in daily.

Thanks!
Sher

Avatar universal
by Terri824, Sep 18, 2010
Hi Sher. I hope I posted in the correct forum. Please let me know, I am anxious to get your input!

Thanks,
Terri

1128665 tn?1269277071
by sherrieP, Sep 18, 2010
Will get back to you as soon as possible Terri, have to prep food for a birthday party today. Back soon!
Sher

1128665 tn?1269277071
by sherrieP, Sep 18, 2010
Hi again Terri, I checked the Urogynecology Forum (and Urology) and did not see the post so to save you having to mess with it, here's some info for you. First of all, a urogynecologist is the specialist for POP, they know all of the issues with each of the 5 types, they know all the options both surgical and non surgical for treatment so I always recommend women see them to get the best treatment possible. Many other physicians will do surgeries for POP and are using techniques that are outdated or don't attach tissues/mesh properly, it really increases the risk of problems.

On the device path, there are many available, tomorrow I'll try to get a link to you with a store in my area that shows you different types of devices so you can brouse through and see what all is available. I tried several prior to knowing that I had POP (I had surgery for rectocele, cystocele, and enterocele) and also use one now for maintenance post surgery. What has worked for me has changed as my body has changed. Prior to surgery I tried a device that looks like a pink V, available in many different strengths of resistence, you insert the bottom of the V and contract against the open end if that makes sense. I didn't think it gave me enough resistence to do much good but I did not have the strongest one available either. I tried a Kegelmaster, this is a spring loaded device that has multiple levels of resistence by moving the screws around. I really like it in the beginning, it really helped build up pc strength but after I had surgery it was painful to use, I'm guessing because of the mesh I have in me. I feel it is too dangerous to use after surgery for maintenance. I tried a ceramic egg (there is a string attached to pull it back out), I liked this fine, you use it intitally laying down and it is like your pc is "lifting weights" which helps strengthen. You graduate to using is standing up. I then moved on to a stainless steel dumpbell which is heavier, you insert one end (like the egg start off doing this lying down, progress to a standing position where you can support the other end of dumpbell, again you are contracting with weight so it is like your pc is lifting weights. I will probably stick with this one for a while. It is easy to clean since it is stainless steel and since you can modify how you use it, quite user friendly.

I'll try to get that website info for you tomorrow, have a  bunch of people coming over for a surprise party for  my hubby and need to get rolling with prep. You can try a search engine, maybe PC strengthener or improve PC strength.

I'll get back to you as soon as I can.
Sher

Avatar universal
by Terri824, Sep 18, 2010
Hope your party goes well and Happy Birthday to your hubby. (it is a b/d party, yes?)
I have not done a search as of yet, but the Myself works a little differently by measuring your progress. I think I've heard of a battery operated one that will stimulate the muscles.
My gyno said he would use either pig skin or cadaver skin, neither sounded very appealing to me, but neither does mesh! I thought I would find a Urogyno at the recommendation of a cyber-buddy. I need to find one in my area. I so hope to avoid this surgery, so guess  I've just put it off. Actually thinking back, I did ask my gyno if there were any exercises that I could do to strengthen the area and he told me no. I sure hope he is mistaken.
Enjoy your party and weekend and get back with me at your convenience.
Take care,
Terri

1128665 tn?1269277071
by sherrieP, Sep 19, 2010
Thanks Terri, yes it was a birthday party, went well.

Here is the link to the page on A Woman's Touch website that shows the devices available for pelvic floor health. Look them over and the descriptions and shoot me your questions.

http://www.a-womans-touch.com/store.php?catID=3969

The link to the Urogyn Forum is

http://www.medhelp.org/forums/Urogynecology/show/743?camp=msc&personal_page_id=908343

You can also shoot me an e at ***@****, it's easier to communicate than scrolling down to the bottom of this page.
:)

I have heard negative things about pigskin so I can't recommend that, nothing either way on cadaver skin. I am full of  mesh and what is most important is that you have a good dialogue with urogyn about the good/bad/ugly of mesh so you are comfortable with that path. My urogyn uses and old school type of mesh, tried and tested, no problems like many of the newer meshes/procedures cause.

There is a link on my website (sherriepalm.com) to AUGS (urogyn asso) that can help you find urogyn in your area. Once you find a few in your area you can check them out by doing a search engine and see if you can find a site that gives patient rating.

Kegels always help no matter what age/stage of POP you are, it just makes sense that rebuilding the muscle that supports the organs is going to help. They need to be done properly though. Once you get to the urogyn forum, you can go to health discussions and click on the Kegels and Kegel Breathing article I wrote, it will give you more info. I was grade 3 prior to my surgery (out of 4) so was pretty messed up inside but have been very happy with my surgery but I know many women who truly don't want to have surgery and use treatments-there is no right or wrong here, it is what is right for you. And it should always be YOUR choice, not what a dr is telling you to do.

I hear all the time from women that physicians who are not urogyns are giving them wrong info so it is no surprise to me that your dr said no exercises you can do......we really need to change the mindset of the medical community, that is one of the purposes of APOPS, the nonprof I'm working on setting up. It's not going to happen overnight but hopefully we can create a shift soon!

Sher

Avatar universal
by Terri824, Dec 01, 2010
Hi Sherrie. I got sidetracked and lost you. I thought for sure you were in my favorite places but couldn't find you. I need to re-read the posts and get back with you. I did look at the link as well as other sites, and might need some more info. So glad that I found you again.
Terri

1128665 tn?1269277071
by sherrieP, Dec 02, 2010
No worries Terri, now you know where to find me when you have questions.
:)
S

Avatar universal
by Terri824, Dec 02, 2010
One thing that I would like to ask is about estrogen creams. Being menopausal and having the rectocele causes pain and dryness. I am wondering if it would be better to go with an estrogen cream or perhaps an herb such as Gotu Cola, Chaste Tree or Ginseng. I need to call my Gyno. and get a refill on the cream but would prefer something more natural.
Thanks,
Terri

1128665 tn?1269277071
by sherrieP, Dec 02, 2010
Check direct email to you.
:)

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