Risks Associated with Stress Urinary Incontinence Treatment

This guest post was supposed to be posted a while ago. Nevertheless, here it is. It is a very interesting read, and I thank Jasmine McCarthy for taking the time to write it. She contacted me a couple of months ago on behalf of the Public Outreach Department at http://www.DrugWatch.com and wanted me to feature her guest post which contains some important information regarding women and the treatments they seek for stress incontinence. The post begins below the line.

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Some form of urinary incontinence affects 30 to 50  percent of women. This percentage increases as women age. Although it  is considered normal, there are things women can do to prevent or reverse  it.

One common form of poor bladder control, Stress Urinary  Incontinence (SUI), is commonly treated using a surgical procedure where  a mesh bladder sling is inserted to provide support for the bladder  and the urethra.

Unfortunately, the vaginal  mesh can pose considerable health risks when it is  inserted transvaginally (through the vagina). For many women, these  complications have caused permanent damage. Currently, there are thousands  of lawsuits, as a result of the medical complications associated with  bladder slings and transvaginal mesh.

What is Transvaginal Mesh?

Transvaginal mesh has gained widespread popularity  since its Food and Drug Administration (FDA) about a decade ago. It  has been used to treat both SUI and Pelvic Organ Prolapse (POP), another  condition that is common in women between the ages of 50 and 79.

Unfortunately, transvaginal mesh is known to cause  complications in both SUI and POP patients. In fact, upward of 10 percent  of women who have had transvaginal mesh inserted to treat POP have experienced  some form of complication. To make matters worse, the health problems  that arise from transvaginal mesh are not always reversible. Even when  the problems can be reversed, women may have to undergo multiple revision  surgeries before symptoms improve. These issues led to one of the first  manufacturers of the mesh to participate in a voluntary transvaginal  mesh recall.

Complications Related to Bladder Slings

There are multiple complications that can occur when  bladder slings are inserted transvaginally. These include:

• Erosion    of the mesh material into vaginal or other tissues.

• Organ    perforation.

• Repeat    infections, especially urinary tract infections.

• Pain    during sexual intercourse.

• General    pain and discomfort that can occur as the mesh contracts and shrinks,    pulling the tissues with it.

• Chronic    inflammation caused by the body's tendency to reject foreign objects.

• Incontinence.

• Difficulty    with bowel functions.

Alternatives to Risky Vaginal Mesh Materials

There are alternatives to transvaginal mesh surgery.  Women who elect to undergo surgical procedures to treat SUI should discuss  alternative options with their health care professional, including abdominal  placement of a bladder sling.

Women who have already had a bladder sling implanted  should observe a regular examination schedule and report any potential  complications immediately.

A Message from a Supporter

Here is an email from a supporter. I do not usually publish these without the permission of the recipient. She wants to be listed, so here goes.

Hi Reina,

First of all, thank you for being a much needed advocate for those dealing with the symptoms of incontinence and working to lift its stigma. I’d like to introduce you to our website, www.parentgiving.com. Parentgiving was created to help time-starved adult children and caregivers provide better care for their loved ones by providing: in depth information and helpful checklists about a variety of caregiving topics; access to 27 senior care experts, buyer guides to help inform purchasing decisions; over 5,000 products covering hundreds of categories—with incontinence topping that list; and a knowledgeable, caring customer service department. We’d love to be listed on your blog. If you think conjoining our pages on facebook would also be a helpful endeavor, please visit us at www.facebook.com/parentgiving.

All  my best,

Mary Otte

Glad the Blog is Helping People

I feel encouraged that this blog is helping so many people. The fact that so many are benefiting is the reason I will keep this up, despite the persecution I will get from society. Believe me. I have gotten a lot of persecution for my advocacy work, but that makes me want to continue it even more.

This blog has also been the reason my Facebook support group is growing. In the past week, three new people have joined the group.

For those who have been asking, I will be adding some new pages with fresh content to the blog in the coming weeks. I will make a page that will contain information about the support in the event that my post about it will eventually get buried. I will also be adding some new resource pages. So stay tuned.

Evaluating My Situation

For the past couple of days or so, I have been sitting here and evaluating my situation as to why the 7.5MG dose of the Enablex drugs were not doing their trick in the past six months or so. As you have seen in previous posts, the meds were doing me a lot of good and allowing me to function normally. I did not have to wear diapers at all, and I could hold my bladder normally. Now, things are different. There were some things that stood out to me that were different that I feel may have influenced the effectiveness of the medication in these past six months or so.

1. I have been under significant stress from August until now, significant stress. I have had financial stress because my job was not panning out like I thought. Things are getting better there, though, so I hope to see that stress disappear soon.

2. I had increased in my consumption of fountain sodas. Fountain sodas always went right through me, so this is likely contributing to why I’d frequently go to the bathroom on the 7.5MG dose since summer or so.

3. I have also significantly increased my consumption of coffee, hot chocolate and tea in the past several months. I love all three of these beverages; however, I am wondering if I will either have to curve my consumption of these or stop it altogether.

4. I have even had the occasional energy drink from time to time as a means of battling the chronic fatigue when it rears its ugly head.

I am wondering now if all of these factors are not present, including the stress that things will improve on the 7.5 again and get back to what was. When I was first on that dose, as you all have seen from past posts, I felt liberated. There were no frequent bathroom visits and periodic wetting accidents at night. I am almost certain I am right about these four factors influencing the effectiveness of the meds based on all of the literature I have read over the years; however, it will be a while before I will have a chance to consult with my doctor about this. I currently do not have insurance, and I do not want to pay a gigantic price just to ask some questions at an appointment. My husband did send the check for the premium, and the insurance should become active once it is received. Now, it is just a matter of waiting.

I do still have the 15MG pills, and I can alternate between the 7.5 and the 15MG pills to see if I can get my body used to the higher dose, like the doctor said to do. The thing is that the 15MG dose caused me severe constipation and stomach pains, and I know these are side effects of the meds. If I can afford to take time off work, like a week or so, I may be able to try something, but that is not seeming practical for my present circumstances. What I will try differently if I do this again is to increase my fiber intake to see if the constipation and the stomach pains will be nonexistent. On the 15MG dose, I was not wetting the bed periodically, and the other three factors I mentioned were not causing any issues. If I can eventually get the 15MG dose to work for me, I can cope with the stress and still have all my beverages that I want. I will not have to make any sacrifices, except for the sodas which I have already given up due to dietary restrictions. I really do not miss them, but the hot chocolate another drinks, I want to continue drinking them. We shall see.

The Latest Happenings

Lately, I have been so busy. My husband is home from the military service, and I am scramming for money because my one job contract did not work out as planned. God is good, though, and the boss I have with the organization I am contracted with is still looking out for me. I am also trying to get things situated, so I have no down time with my business. I do have the backup Internet connection. Now, I need at least two backup computers. Since my business is online, these are necessary steps to take.

Anyway, on to the latest happenings. Things are not as I thought with the meds. I have been taking 7.5MG of Enablex. On this dosage, I have enjoyed complete daytime control, though, the bathroom usage was frequent. I would have occasional nighttime accidents. I was wearing a diaper to bed every night to avoid wetting the bed. However, I wanted to try seeing if upping the dose would make things better.

I talked to my doctor, and he agreed to up me to the 15MG dose. I was on that does for three days and suffered severe constipation and excruciating stomach pains. After speaking with the doctor's office, I was told to get off the meds (I stopped even before I talked to the office staff because I just could not take it anymore, and my husband did not want me to continue to suffer, either.), and then I was to start back slowly, alternating between the 7.5MG and 15MG doses every other day. I am supposed to watch and see how my body responds. I hope it responds well because I really wish to be free of the diapers altogether. If I do not respond well, then I am just going to have to remain on the 7.5MG dose that I have always been on because it does not cause any side effects, and I will just have to wear diapers at night and on very long trips where bathroom access is not going to be easily had.

No doubt, I do feel really down about the whole thing. I feel like I am back where I started, back at square one. I am wearing the diapers twenty-four/seven again until I get things under control. I did not want to do this, but I had no choice.

　

My Enablex Experience Thus Far

So, while I have enjoyed success with Enablex, I invariably have suffered from the most common side effects that I have read about, a bladder infection and a kidney infection.

At first, I thought I was smooth sailing. I thought, Jee, it is so great to take the med and only have the most mildest side affect, a dry mouth. But the fun really began a month after taking the med.

It began when I felt like I had to pee constantly. I was so annoyed. I'd go to the bathroom, and then I would try to go again, just to see if I could get rid of that annoying feeling of always feeling like I had to go. After it went on for a few days, it occurred to me that I had a UTI of sorts.

I went to the doctor and took a urinalysis. Sure enough, I was right. I had abladder infection. I was prescribed antibiotics. A couple of weeks later, I developed a kidney infection.

I am fighting that kidney infection right now, as a matter of fact. I had this infection since this past Friday. I did not go to the doctor for it because I had enough antibiotics left over. Thank God, too, because I really did not feel like going to the doctor's.

Some of my friends asked me if I would discontinue taking the Enablex. I told them that I would not because I enjoy having full control of my bladder and love not having to rely on diapers. The infections are annoying; however, I can deal with them. What I think I am going to do is dramatically increase my daily water intake and drink some pure cranberry juice on a regular basis. I am sure that if I do that, the infections will be kept to a minimum or decrease until there are none at all.

I am going to have to discontinue taking Enablex when I become pregnant and when I breastfeed, though. It is not at all recommended to take Enablex when pregnant. As a matter of fact, I am not going to take *any* meds when pregnant, even those that doctors deem okay. Doctors say you can take some meds when pregnant, but I will not take any because I refuse to put any chemicals into my baby's body. I will not have to worry about any of that for a while because I do not plan to get pregnant any time soon.

New Incontinence Support Group on Facebook

I started a new incontinence support group on Facebook. I did have one on Google, but it proved to be unsuccessful. I am pleased to say that the incontinence support group on Facebook is very active.


I have made this group a secret group to protect people's anonymity. There are many who are still very embarrassed and ashamed of their condition, and they do not want people to know they are in such a group or that they have incontinence problems. I want to be sensitive to their feelings. If you want to be added to my incontinence support group on Facebook, add me as a friend by either typing in my full name, Reina Grosvalet, or by typing in my email address, waldorfpc@gmail.com. I will accept your friend request. Once I do, send me a message on Facebook saying that you want to be added to the group, and I will add you.

I need to tell you of the group rules up front. They are as follows:

1. What happens in the group stays in the group. Some of my members are worried about things being shared outside of the group that the discuss. I assured them it would not happen. If it did, the offender would face consequences.

2. No infantilism and fedishism. My group is not the place for that kind of thing. My group is an incontinence support group where incontinent people can go to get support. Loved ones and caregivers are also invited to find support and learn.

3. Keep it respectful. It is okay to disagree, but please be mature about it.

That is all my rules. Not much, huh? I look forward to seeing you all in the group.

I'm Liberated!

Finaly, there is awesome news!

For the past week, I have been completely accident free. I can control my bladder like a normal individual--I do not get those strong urges that make me feel the need to run to the bathroom all the time, and I do not wet the bed. Improvements came faster than I expected. It feels so cool to wear underwear again and possess the ability to hold my bladder for several hours.

Now, I do currently have a bladder infection, a common side effect of the medication I am on, but that is nothing to me. I have had thousands of those in my lifetime, and I'd rather have a thousand more, if it means I will be able to control my bladder. UTIs and bladder infections are easy enough to treat and are not a severe side effect. Uncomfortable? Yes. Serious? No.

I am just going to have to take some precautions to make sure the infections stay to a minimum. I will have to consume more water, and I will have to add cranberry juice to my diet. That is fine with me. I just thank God there is a solution to my problem. I feel liberated!

My Mission As Incontinence Advocate Makes a Difference

Two things happened in the last few weeks that reminded me of the purpose of my incontinence advocacy work. It is these two things that have definitely reaffirmed what I am doing is an awesome thing and that I need to keep on with it, despite any persecution I may receive as a result.

The first thing that happened was that a student from UNCC Carolina studying urology contacted me. He found my blog and was interested in interviewing me because he wanted a personal perspective. He conducted his interview through email. He asked me what a day was like living with incontinence and using adult diapers to manage Overactive Bladder. I told him what he wanted to know. I not only explained what a typical day with incontinence was like, I also told him what it was like to take vacations and how using adult diapers impacted those occasions.

I also talked about what life was like when using incontinence medications. I told him about my past experiences, as well as my current one.

He will more than likely be contacting me in the future, as he told me he would throughout his studies. I totally do not mind because I love educating people about this condition, especially if I can provide a new kind of insight.

The second thing that happened to me was that a woman in my incontinence support group that I run contacted me by phone and told me that the courage that I have taken to so openly discuss my condition and my willingness to help educate society and help others suffering from incontinence has helped to liberate her. She told me that rather than live in shame and lying to people about what her problems were, she was ready to stand up and face the facts. She told me that she felt she no longer had to allow Overactive Bladder to rule her life. Rather, she was going to rule it. She told me she was going to take the bull by the horns and face things head on.

I felt so touched by this woman that I almost cried when listening to her talk. I know that people before have told me countless times that they appreciated my work and what I do, but it was something about this woman that really touched me. I could tell she was so pained. I mean, she was so ashamed that she got rid of her boyfriend because she feared having accidents during intimacy, and she said it would be the death of her if her boyfriend found out. She told me her incontinence made her feel dirty. She told me that she went through several pairs of underwear a day and that she did not want to see the doctor because she was too embarrassed. She said that she was considering wearing diapers and just being done with it. I told her she really should get the courage to see the doctor, and I also told her what to say if her doctor ended up being the judgmental type, as some are when it comes to incontinence. I do not know, but I think some of these doctors get their degrees on their backs because the way they treat patients, when they know that incontinence effects people of all ages and has many causes, is absolutely crazy. I told her to ask about Enablex, the medication I take and see what the doctor said. I told her the meds were working for me and that if they worked for her, she could be free of the prospect of wearing diapers, at least until there was no way the meds would help anymore. I wished her well, and we will definitely be talking regularly, since she is also a part of the blind community. She really is one awesome lady.

Do you see, people, why it is so important that the view of society towards the condition of incontinence is changed? People fear being judged so bad that this condition actually imprisons them, forces them to isolate and give up doing the things they loved. It should not have to be this way. That is why I do what I do. It is my hope that through sharing my experiences, supporting those with incontinence, and doing my best to educate as many as I can that the walls of stigma are eventually torn down and that all people with incontinence can be liberated and freed from their prison of shame. I will not stop doing what I do until I either die or the stigma is gone, as God is my witness.

Things Are Getting Better

Well, I do have some good news.

Yesterday and today went well. I had four accidents yesterday and three today. I also decreased the amount of time in between bathroom breaks. Instead of going every two hours, I have been going every hour and a half. I will bring it back up to two hours again on Monday again to see what that will do. I also took out the caffeine.

Something else that is pretty neat is that I may be doing some speaking engagements with the Simon Foundation, an organization that advocates for people who suffer from incontinence. Last night, I emailed them and told them I was interested in doing this. I will wait to hear what they say.

I am so glad things are starting to get better. I was beginning to get discouraged. Heck, I even felt like giving up, but I did not. I pushed myself because I kept in mind the reward at the end--normalcy.

Good night, people. I shall have more to say tomorrow.

No Good News to Report Today

Today was worse than yesterday. I wonder if it was because I drank two cups of coffee.


Anyhow, I had eight accidents today. How disappointing is that? And come to think of it, I had caffeine yesterday also. I had Doctor Pepper from McDonalds, and fountain sodas really make me go. So, I know I am going to have to give all of those up without a doubt. I just hate that because I feel like I have already had to give up so much in the way of diet that I feel upset about giving up just one more thing. But if I want to keep the accidents down, I am going to have to cut them out of my diet. And that will mean no more drinking for me, either. I have to give up the alcohol because that will also make my bladder work, and Lord knows I do not need that.


I wonder how a child feels when he or she is potty training for the first time and has to get used to something completely different. I wonder how much worse that child feels when he or she has accidents. What this is reinforcing for me is that when it comes time for me to potty train my own children, I will never punish, yell, or scold for accidents. Doing such things is pointless and stupid! I was never treated that way when I was growing up, and thank God I was not, or else I would have been severely traumatized. My family has always been very understanding of my problems, so I will treat my children in the same way and extend to them the same courtesy. I will also teach my children to be accepting of others who have problems like these. I do not want my children being ignorant like the rest of society and going around and judging people for things they cannot help. I want to contribute to bringing forth a more understanding generation, a generation that will accept people with various problems and treat them like humans instead of specimens.


I hope I have better news tomorrow. I am going to cut out the coffee and all caffeine products and see how I do. I know it is too early to expect results yet from the meds, but I am willing to try anything. I will certainly see how much difference it makes when I do not have my daily cups of coffee. And boy is that going to be very difficult because I have chronic fatigue. I am also going to have to cut it all out when I do my bladder diary this coming Tuesday. Tuesday, I will chart how I am affected without the caffeine. Wednesday, I will drink the caffeine like I normally do and chart the differences.


End of rant.

My First Official Day of Potty Training

Well, my first official day of potty training has not gone well.

First, I had so many accidents, six to be exact. I did stick to my bathroom schedule, but I had the accidents in between. This is certainly not an indication that I am ready to wear underwear for any length of time.

Second, I am having trouble getting used to using the toilet again. I mean, you have to think. I have been using diapers completely for seven years. Now, I have to train my brain and my bladder to communicate with one another again, so I can get the signal and go to the bathroom and not in the diaper. This involves a lot of concentration, so I am not able to get heavily involved with any kind of task. This includes my work.

I can now truly understand from an adult's point of view why toddlers dread potty training. It is so frustrating, and it can be very discouraging when you have a lot of accidents. I mean, it can make you feel really bad and shameful. I know that it does that to me. If I did not have the motivation to be normal and be free of the severe inconvenience of diapers, I'd so not care to deal with this. I am not giving up, though. I do not expect this to be easy, and I was told it would be difficult. I am going to hang in there because I know that it is worth it. Unlike a child who finds candy and other toys to be good incentive to remaining accident free, a trip to the spa for a full day pampering will be mine.

I wonder what tomorrow will be like. I do not count on it being any better than today because it can take up to two weeks before I see any results.
　

Hope for Normalcy

I promised that I would let you guys know how things went at the urologist today. To tell you the truth, things went well. It seems that there will be hope for me being able to control my bladder.

There is a new medication that is used for overactive bladder called Enablex. Unlike the other medications that are prescribed to treat overactive bladder, this one is specifically for this condition and this condition alone. I have been put on this medication at 7.5 milligrams and will be evaluated over a two week period to see how it works for me.

Along with the medication, I am expected to be on a voiding schedule to retrain myself to use the toilet again. I have to make myself use the bathroom every two hours. Even if I cannot go when I sit on the toilet, I have to sit there until I go. It is very similar to potty training a toddler. Also, when I am urinating, I have to try to stop my urine stream. The doctor said that I would see progress within a two week period. I certainly hope so, anyhow.

This process is going to be frustrating because it is going to be hard to do work having to stop often to retrain my bladder. It is worth it, though, if it means that I will eventually get to enjoy normalcy. During this time, it is going to be difficult to do work or go out anywhere because I have to be near a bathroom, until I get to a point where I can hold it and not have any accidents, and I am going to have to stop to go often.

After I get daytime down, then I have to work on not wetting the bed. I will have to wake up every two hours during the night. I will be doing this, until I can stay dry all night long.

I do not expect this to be a quick process. I also do not expect to get out of diapers quickly, either. It is going to take time to get to a point where complete control happens. Until I am confident that I can hold it for a long period of time, I will more than likely still use diapers when I go out and when I go to sleep. I have to have two consecutive months of complete dryness every single day and night before I am confident that I can completely wear underwear. I do not want any embarrassing accidents while out in public--I had my share of those--and I do not want to wet the bed. I am sure my husband will appreciate the precautions I am taking because I am one hundred percent sure he will not want to wake up in a wet bed. Quite frankly, I do not, either.

Now, even if I can attain complete control, I am still going to keep all the diapers I have left over. I am for the following reasons:

*Even if the medication works, there is a chance my body will get used to it, and it will stop working in the future. This is a risk with any medication.

*If and when I get pregnant, I will have to discontinue the use of the medication. This medication is still new, and it is not known if it will harm an unborn child or not. Personally, I will not take the meds, even if it is safe because I do not want to put any chemicals into my baby's body for any reason.

*I cannot take the medication if I decide to breastfeed because it is not known whether or not it can pass through breast milk. I only want to breastfeed because I do not want my babies drinking formula. Formula is artificial nutrition, and it is processed with chemicals, and I do not want anything artificial in the bodies of any of my children. Even if I cannot breastfeed, I will consult a milk bank or some other form of natural nutrition. But I will do every single thing in my power to breastfeed, like consuming twice the amount of fluids, eat a balanced diet, and do any other recommended thing to insure ample milk production. Most moms do not know this stuff, hence the reason so many women nowadays have so many problems with their milk production. Not to mention, feeding a baby on demand will also help with milk production. Sticking to a feeding schedule, something that is not good for babies' growth and development, will cause there to be problems with milk production. Many pediatricians continue to give moms the flawed advice to put their babies on feeding schedules inevitably causing milk to fail and babies to be put on the bottle and be fed that nasty formula. Thankfully, the benefits of feeding the baby on demand are becoming more widely known.

*the condition may worsen over time. If this happens, I will either have to increase the meds I am on or take something different. The surgeries are out of the question, and even my doctor agrees with that.

For now, I will work on getting myself to remain dry, and I will enjoy wearing sexy underwear while I can.

　

One Last Try At Being Normal: Taking a Trip to the Urologist to See About My Overactive Bladder

This week, I am going to attempt to go back to the urologist to do something about my overactive bladder. As many of you who read my blog know, I have been completely urinary incontinent for seven years now. I have depended on diapers to manage my incontinence. The last few doctors I've seen, one included a urologist, told me that there was nothing I could do for my condition, thus I would have to wear diapers for the rest of my life. I previously accepted that. Last year, though, things changed.

I got tired of just accepting that nothing could be done for my overactive bladder, so I talked the matter over with my primary care doctor. He told me that he could try me on Ditropan to see how it would work. Now, I took Ditropan when I was eleven years old for a brief period, but I had some negative effects from the medication. I started sleep walking, had hallucinations, and had terrible nightmares. I was taken off of it after a week of being on it. I told my primary care doctor about this, and he told me that I had nothing to worry about because it had been so long since I took the medication, and things would be different, since I was an adult. He also told me that these reactions were common in children. I agreed to try the medication again.

Ditropan did seem to work somewhat. I noticed that the amount of times I had to urinate were less frequent. I even found it possible to make it to the bathroom somewhat, but I still had a lot of accidents. I also found that accidents would happen when I was focused on things, like my work. Perhaps, this happened because I was so used to going in the diaper, and I had not used the toilet for so long. I was also wetting the bed every single night still.

I took the meds for a couple of months. During this time, I set a timer to remind me to take frequent bathroom breaks, and I had to stop work frequently to avoid getting so focused that I'd wet on myself. I wanted so bad to retrain my muscles to use the toilet. Because the meds lessened my urges, I was able to have slight progress. It was not good enough, though. I still had to depend very heavily on the diapers.

Though I was not nearly where I wanted to be, there were some things happening that gave me some hope. I was on the lowest dose of medication during that time. I wonder if things will work to the point of me being able to get out of diapers and wear underwear if I am given some sort of therapy to help me build my bladder muscles back up (I am sure they have somewhat atrophied because I completely relied on diapers for seven years now.) and the dosage of the medication is increased. That is why I am going to see a urologist.

I am really nervous about this. I am also scared of being let down. I know that taking the medication is only a temporary fix and that I will eventually end up where I am right now, back in diapers and very disappointed, but I just want to enjoy underwear and being normal for a little while. It has been so long since I wore underwear that I forgot what it feels like. I also somewhat forgot what it is like to use the bathroom on a regular basis, so I will have to relearn. It is going to be like I am potty training again. I have to get used to using the toilet instead of using the diaper. It is going to be very difficult at first because I am going to have to take scheduled bathroom breaks to work on daytime toilet training. When that is mastered, I can then work on nighttime toileting, if it can be achieved. Like a toddler, I am going to have to get out of diapers slowly, but I will not get rid of the ones I have left. I am going to keep them for when the meds stop working down the line. Diapers are expensive, so I will not trash them. I do hope, however, that I will not need them for several years.

There are surgeries that can temporarily correct overactive bladder. I say temporarily because they often have to be repeated, especially in the case of the Sacral nerve Stimulator. Or, the surgeries fail after a period of time, like in the case of the surgery that is used to increase bladder capacity. Also, the side effects of these surgeries are extremely serious, and from what I had read, the risks outweigh the benefits. Not to mention, special maintenance is required lifelong. There is a bladder removal surgery, but I am so not willing to have my bladder taken out and replaced by a bag that is similar to a colostomy. Forget that! I do not want to get out of diapers that bad that I severely change my life for the worst. I love to swim. I love making love, and I love so much else that will be ruined, if I were to consent to bladder removal. So, no way!

I thank God that my husband is very supportive and understanding of me during all of this. It really helps because this is a very difficult thing to live with, especially because society makes it so taboo. He lovingly takes time to listen to my concerns, and that really means a lot to me. His love and support makes coping a lot easier. God has blessed me with a fabulous mate who understands me and loves me for who I am. He is encouraging me to get help and do all that I can, and he told me that if things did not work out, he would not be upset. I am glad of that. My husband told me that so long as I tried my best that was what mattered. I will certainly try my best.

He has always been supportive and understanding, even before we were married. My husband and I have been best friends going on ten years. He has never judged me or thought negatively of me because of my incontinence. When we first became friends, I tried to keep it a secret from him. I never intended for him to find out, but he did on accident. When he did find out, he handled it quite well. He was so noble and kind about it. Sometime in the future, I will share the story about how he found out about my problem.

I will keep all of you updated about what happens at the urologist, as well as let you know about my progress.

Common Potty Training Statements Offend (A True Story)

"You are going to be such a big girl when you finally learn to use the potty," said my friend as she was bringing her three year old daughter to the pot to sit on it. I was standing over at the fridge to get out a TV dinner that I would be eating for lunch. It was meatloaf, mashed potatoes, and corm. It has always been a favorite of mine. I stopped preparing the dinner and just stood there with it in my hands. I was taken aback by this statement she made to her daughter.

"Wait a minute. Why did you just say that?" I asked kind of hurt.

"I am just trying to encourage her to use the potty," said my friend.

"By lying to her?" I asked.

"I am not lying to her!" she shot back.

"Yes you are because diapers are not just for babies and being able to use the potty does not make you all grown up. I wear diapers, and I am an adult who is a professional business owner and powerful blindness advocate. And there are stupid immature adults who can use the potty who act like children and do nothing with their lives but sit on their butts and collect off other people's tax dollars. At least I am industrious and give a darn about earning my own and doing my part to contribute to society. Some baby, huh? I really am a stupid baby because I have to wear diapers? I hate the way society programs kids to think. Nobody is all grown up just because they can take a piss and a crap on the pot. Wow! Some qualifications to making one an adult! I am afraid it takes much more than that."

I did not give her a chance to answer. I dropped my TV dinner on the counter, not caring about eating anything at that point. I put on my slippers, and I stormed from the hotel room. I ran as fast as I could with tears streaming down my face. I was forgetting everything that I was taught about crying in public. I grew up knowing it was a very shameful thing to do and that one should keep the emotions in check in front of others. But this hurt too much. Fortunately, nobody was in the hall, except my friend who was completely blind (I honestly did not know she was there, until she called out to me. That was a real surprise.). She would not have known I was crying because I made no sound. The tears were the only indication of my crying.

"What's wrong," my friend asked. She was standing over at the elevators. "I know it is you, Reina, because I can hear your footsteps. Why are you running? Who or what are you running from?"

I got my voice in check and then said, "I am hurt right now. I hate the way people lie to their children to get them to use the potty. I hate it! I hate it! Saying statements, like "Diapers are for babies and using the potty is for big boys and girls." is so freaking stupid! It is stupid I tell you! It should be just as bad to say these statements, as it is to say racist comments. That crap should be considered hate speech." I was rambling on, but I just did not care. I was glad she was blind because she could not see the tears coming down my face, so I technically would not have violated what I had been taught. I did good to disguise my voice, so it would come out in an angry tone and not give any indication that I was crying. I am good to putting up that kind of front, you know?

"Do you want to talk?" she asked.

"Yes," I said, and my voice was barely audible.

We went down to her room. She was another floor below mine.

"So, what happened?" my friend asked. "Why are you all upset?"

I relayed the entire experience to her. She sat and patiently listened to me. She was a really good sport.

"I can understand how that will upset you."

"You do?" I asked.

"Absolutely," she said. "I understand that it made you feel inferior because you have a medical problem that requires you to wear diapers, and you are far from a baby. I can see how those types of statements about diapers being for babies and the potty being for big people would offend you."

Whew, I was so glad she understood. I was glad she did not judge me or write me off, thinking I was crazy because those things upset me.

"Do you want to go to the bar to eat and have a few drinks?"

"Yeah," I said. "But, I have to go back to my room to get my wallet and things. And boy, is my friend going to be happy to see me."

"I'll go with you."

"That may be a good idea," I said. "I do owe her an apology. I really did freak out on her. It was not her fault. She was only doing what society does to teach and motivate children to use the potty. She did not know any better, and she especially did not know it would offend me. Oh, I feel so bad."

We walked down the hall together to the elevators, and then we went to my room. I put the key in the door, and we both went into the room.

"Vonnie," I called to my friend. "I owe you an apology. I am so sorry I freaked out on you about the potty training thing earlier."

"Don't worry about it," she said.

"Are you sure?" I asked. "I really blew up at you. I mean, you did not know it would hurt me. After all, you were only doing what society programs parents to do to help children learn to use the potty and feel motivated about doing it. You were only following the propaganda."

"Yes, after I thought about it, I understood why you felt so bad. You know what you should do?"

"What?" I asked.

"You should go online to that support group you go on, and you should talk to them about how to deal with things like that. I think it would help you to talk to others who have to deal with the same thing and see how they handled it."

"I like that idea," I said. "Thank you so much."

"No problem. I am trying to help."

"Thanks, Vonnie," I said.

I went over to the desk where my computer sat, picked up my wallet and my bag, and I walked to the door.

"Vonnie," I said. "I am just letting you know I am going down to the bar to get some drinks. After that, I am going to hang out with some friends, eat some food, and probably go out shopping or something. If you need anything at all, call me."

"Okay."

We left the room. Boy was I so relieved that my friend understood. It was not like I was trying to be mean or anything. I understood she was only trying to help her daughter and was doing what she knew, but those statements send up rage inside of me. I wish they could never be used again. I find them to be dishonest and hurtful. The only way that such statements can stop being used is by not only educating the public about the condition of incontinence and how such statements make us feel, but we can also give people alternatives that will help encourage the children all the same that will not be so offensive.


Alternative Praises for Children Learning to Use the Potty

Wow! You did it! I am so proud of you!

Way to go! You are doing great! Keep up the good work!

Wow! You used the potty! Good work!

that is how you use the potty! See how good you've done! Awesome job! Let's see you keep on doing it.

If you keep using the potty and can stay dry, we will go and pick out your favorite underwear. You can pick out your favorite cartoon character or favorite color.

Do you know what all five of these alternative praises have in common? The phrases, "You will be a big boy or big girl." "Diapers are for babies and underwear is for grownups." or "You will soon be all grown up." are omitted. These alternative praises allow the child to feel encouraged and good about what he or she is doing, and it is all being done honestly without using phrases that continue to nurture the stigma of incontinence.