additional info: incontinence

In my most recent update I mention having found a solution for my incontinence, and I go on from there and tell of an additional find (another form of estrogen) that helped me even more with my problem.  What I didn’t mention was what made me ask for more assistance and that came because of a set back I had at the end of May 2004.
I had been going along using my PremPro/Premarin and I was so thankful because of the huge difference it made in my day to day life with my continence.  During the Memorial Day week-end I had one of my horrendous three day migraines (started Friday night and continued Saturday night and Sunday night), and when this happens I usually don’t take my everyday medications because it’s just too much of an effort to get my head up off the bed (or where everI might be).  On the second day of my migraine I started having lots more leaks and by the middle of that second night I was totally wet, and that’s when I realized because I hadn’t taken my meds, I also hadn’t taken my estrogen replacement.  I went and got my medications and took all of them right then and there, and within a few hours I could tell it was again doing its job of helping to keep me dry.
During the day on Sunday I was trying to come up with a reason why my stopping the medication (estrogen) for two days had made such a huge difference, after all I had been also doing my kegel exercises from the beginning.  Those exercises should have had some sort of effect on my pelvic floor muscles after all of this time from mid March until the end of May 2004, but it was as if I had never done not even one pelvic floor muscle exercise.  It was just like the day the supra-pubic catheter was taken out just two days shy of one month post-op, and I just shouldn’t have been that wet again.
I had my second Continence Clinic appointment on 1 June 2004, and so when I was there and the first thing I discuss with Lisa is what happened the previous week-end.  I wondered did she have any idea why this happened, and what could we do to make sure it didn’t happen again.  Of course Lisa (and the staff of the Continence Clinic) don’t believe that estrogen helps with continence.  They have apparently done studies on this very subject, and supposedly it doesn’t work, but it did work with me so what goes here?  During this visit I asked Lisa if adding a vaginal form of estrogen might be in order, and after looking at my chart and seeing where the pathology report said something about my cervix or uterus being atrophic (I think that was it), she said yes she could prescribe some Estrace vaginal cream.
My next subject with her was why my incontinence returned so quickly after missing only two doses, as if I had never done even one pelvic floor muscle exercise (Kegel).  I asked her shouldn’t we recheck my technique by doing the biofeedback again to see if I was using the right muscles or whatever.  She told me that I was getting adequate feedback from my PFM exerciser and that meant that I was doing them correctly.  She then told me I would return in two months for my next appointment and that was when they would do the biofeedback and if necessary do some retraining if I had faltered in my technique.
I was extremely unhappy at hearing how long I had to wait for this, plus the fact was that I had not yet seen a physician in this clinic.  Their own web site says that you see a physician to help determine your treatment plan.  I asked her about that and she said I could see the doctor during my next appointment with her in two months.
I made a little noise about all of this that to me just wasn’t what treating patients is all about, not answering questions or even attempting to answer them.  Then when wanting to see a physician one is told they have to wait two months, this just wasn’t satisfactory.  I was able to get an appointment with the physician (Dr. Patricia Goode), and I saw her in one month not two, and additionally I would no longer be seeing Lisa which was fine with me as her technique (which I will not go into) left much to be desired.
Unfortunately even though I asked the same questions of Dr. Goode, I basically got the same answers or lack of answers.  I saw her again in one month, with basically the same result although there had been other things going on with me in between which she interpreted as part of my problem with my leaking.  I discussed all of these events with Dot Smith who had been my support through all of this (I mentioned her in my last update), and I asked her if she thought I was being unreasonable with regards my expectations of some sort of answer or at least an attempt at an answer.  Dot said I most definately was not being unreasonable, that I had every right to at least get some emotional support with everything I was dealing with.
With those words from Dot I decided to take some action, and the first thing I did was call the Continence Clinic and leave a message for Dr. Goode, and that message was that I had expected a biofeedback session during my appointment with her that same day.  That I couldn’t understand why it hadn’t happened, and I’d like to hear back from her.  The next morning the young woman in the clinic called me and told me that,"Dr. Goode said she had decided on a treatment plan and she was sticking to it, and that she would see me at my next appointment".
When I heard these words I could not believe my ears, and in that angry state I wrote her (Dr. Goode) an email and laid it all out in plain words.  I won’t detail my comments of that email, but I said I thought I needed a biofeedback session and that I wanted a biofeedback session.  That session did happen and the result of it showed that my pelvic floor muscles were fatigued.  This was happening because as I was doing my Kegels (as had been explained to me by Lisa) I was tightening too much, and this was causing my muscles to be unable to do what they were supposed to be doing which was getting stronger so as to help with my continence.
Dr. Goode was now radically changing my exercises and I was starting over at the beginning just like I was back the middle of March 2004 and this was the middle of August 2004.  I told Dr. Goode how I had mentioned to Lisa on 1 June that if in August (at my next scheduled appointment with her)I found out I’d been doing them wrong all that time and that was why I was having the problems I was having that I would be extremely upset.  Lisa’s only comment to me at the time was that she knew I was doing them correct because of the results of my in home trainer, and that therefore I didn’t need any biofeedback session to check my technique.  Well of course she (Dr. Goode)realized that none of them had really been listening to what I was saying to them and what I was asking as well.
So I left that appointment with new instructions, and even though I was upset at starting over, this time as I did the exercises correctly I did find that I could tell the difference within a month of starting the new regime.  My next appointment with Dr. Goode in September showed a definate increase in my muscle strength, and then during my October appointment she reported that she could feel tightening (she was doing a manual pelvic exam) on all sides as she did her exam.
I obviousely continue my Kegel’s, though not as much as I should but I do them.  Additionally in the summer of 2005 I started to taper off the oral estrogen and by December I was off them completely.  I also have reduced the frequency and amount of vaginal cream that I use, and if I have any problems with leaking I just add an extra dose in during the week.  For the most part I’m using 2 grams of Estrace cream twice a week.  This is something I can live with quite easily, and as long as I remember to use the bathroom every few hours I do extremely well to the point of only using a panti-liner and sometimes no pad at all.
I am a very fortunate woman, and I thank God for all he has given me.

Lou Graham Author