Speech, Underactive Bladder Science and Policy, WA DC, March 10, 2017

CURE-UAB is the only meeting dedicated to underactive bladder. The conference should help to create awareness for the aging UAB. The goal of CURE-UAB is to dramatically increase public awareness and translate research results into clinical care that will improve health outcomes in older adults.

 My talk to the UAB, Third gathering in Washington DC, March 10, 2017.

1. Title Page

 Hi my name is JoAnne Lake and I have an underactive bladder and bowel.  I was diagnosed in 2009.  My condition is permanent.  I spend time writing to others with the same condition.  I have a blog, Trudy Triumph.com and have written a book, Beyond Embarrassment about this road I travel.  My goal is to offer empathy and support to men and women with this condition.

2. A picture of my family

 This is my family they are all wonderful – truly, they are the best part of my life. When you look at me, you cannot see the world within me

But truly the people I love are all in there.

3. In Contrast here is a Picture of Victorian woman

When you see a middle-aged woman – what is your perception?

Do you think of her as an individual who lives a full life or more like the classic Victorian woman?

I enjoy reading. Recently I read A BOOK At Home by Bill Bryson.   He Describes a Victorian woman like this..

• The Victorian Woman, truly a 2^nd class citizen, had no legal standing – After marriage, women did not have the right to own their own property, keep their own wages, or sign a contract.
• The development of breasts and mature reproductive organs during puberty was thought to drain her energy; she was seen as weak and dependent on men for everything.
• After puberty, she was considered ill or on the verge of being ill: Menstruation was considered willful negligence.
• Her condition was considered permanently pathological.
• If a woman experienced pain as part of her monthly menstruation “pathology” her social habits &/or the manner in which she dressed were considered the source.

When you look at me, how do you really see me?

Now consider how society sees me.  I have a broken bladder and bowel.  Perhaps their perception of bladder and bowel dysfunction is a bit Victorian as well.

4. My Medical History

My Early Symptoms mounted gradually, over a period of years…This was so gradual, and I do not even know when they started.

• My urine flow became weaker and weaker.
• I was lethargic and depressed but lucky for me I was working as an elementary PE teacher, so I had little opportunity to give in to how tired I felt. My symptoms just made my job difficult.
• Food did not taste good.
• I had a (constant) pain in the side of my body – that would not go away.
• At times, I had bowel accidents during long walks.

Finding help, took a long time! Years in fact.

• I went to several doctors who offered me stool softeners, for irritable bowel syndrome and antidepressants for depression.

One physician suggested I might have fibromyalgia. Should a doctor touch on a diagnosis of Fibromyalgia without explaining the cause of my discomfort?

• Was I being treated like a Victorian woman?

4. My Condition was because my bladder was not emptying, but I had no idea.

My many symptoms were related to my underactive bladder.

• By age 55, the pain was so intense because I developed a bladder infection. I was referred to an urologist because my bladder was larger than normal.
• It turned out that urine retention had stretched my bladder & 2 liters of urine were drained from my bladder that day
• I was taught how to use an intermittent catheter.

As a result, I was then prone to constant bladder infections. I spent the next 4 years with chronic bladder infections.

                              Emotional Impact

When I left the doctor’s office on that fateful day after my diagnosis of urinary retention I was glad to know the root of my problems but I also I felt humiliated and defeated.

5. I started to write to clear my head.

I was so hungry to learn about my condition. Do you realize there is NOT a lot of information out there, for a lay person to learn more?

• What I was really looking for in the beginning though was information from another real person, a patient who had experienced what I was experiencing . . . (no offense to you doctors or research scientists). I did appreciate the efforts of the busy nurse who answered my many questions.
• I wanted a “friend” to hear my fears, my embarrassment, and my horror. I wanted to feel that I was being heard & understood
• How could that happen when I was diagnosed with a condition that people are not allowed or comfortable talking about?
• Attitudes are so Victorian. It is not like I could write to dear AUNT Betty and pour my heart out about bowel and bladder dysfunction.
• I could not find comfort in my despair or the compassion that my heart ached for.
• Before I was diagnosed I had never heard of a underactive bladder. I burned with frustration as I wondered, and still do, how this could have happened to me in the first place.
• So the blog www.TrudyTriumph.com was born
• Armed with the anonymous pen name, Trudy Triumph, I let it rip. I poured my heart out and in return, I received letters from people feeling the same frustration.

Mostly, I try to write words that are hopeful, grateful, positive & encouraging

The message to my readers is…

• Be your own self-advocate: partner with a doctor for the best health possible.
• You are not alone.
• Think of yourself as healthy and remember there is nothing to be embarrassed about.
• Knowledge is power.
• Tomorrow starts a new day. Think about that one folks. Put yourself in the shoes of a person that has just had a public bowel blow out. A new day is important.
• When I wrote this book, I put it all on the line and it has come with great satisfaction – I wanted to help others who found themselves in the place I was when I was first diagnosed, but it has come at a cost.
• Since I self-published, I have borne 100% of the expenses — I have actually spent 1000’s of dollars. I depend on word of mouth and book reviews from readers primarily, to help get the word out that my book is there to help those suffering from bladder & bowel issues.  If each of you would write a review, it could go a long way to help patients find the help & encouragement they may be seeking.
• I have exposed myself & now many others know my very personal struggles. I might worry that my reputation is a bit shot. But then, I see myself being invited to talk to all of you at the UAB conference for the 2^nd year. Thank you for that.
• However, it is still not easy to tell others who are not in the loop, what I write about. Causally a person might ask, “Oh you are an author, what do you write about?” To save embarrassment, I frequently say “digestive issues.”

7. Question mark

In the beginning, I wondered how I got this condition anyway. I wondered about the causes of a bladder that wouldn’t empty. As I read I found a lot of the material covered the prostate, child birth, MS and Parkinson disease as likely causes of a neurogenic bladder.

• Perhaps my condition started because of a vaginal hysterectomy or herniated disks. It is a mystery to me.

Urinary retention/underactive bladder.

As I researched, I wrote different causes on a piece of paper.  My list became long. After a while, I had a good-sized list.

8. Here is the list of causes I’ve compiled:

I could not believe the many ways a person could get a underactive bladder. Why had I not heard of this condition before? But then again, neurological conditions & trauma are not common dinner conversation  . . . and for sure discussions of bladder and bowel complications are very taboo.

9. New Stats

Currently, My New stats are:

• I have taken assorted oral antibiotics every day for the last year. This has upgraded my kidney condition which was last year third stage kidney failure.
• I now have an Infectious disease doctor on my team.
• I’ve reduced the frequency of bladder infections I experience using preventative antibiotics. I had only one infection this year.
• I no longer experience unexpected bladder infections on a regular basis, I just live the reality that when I run out of antibiotics that the bacteria are susceptible to, the current status quo could come to an end.
• My condition no longer embarrasses me.

Catheters are a “broken” Treatment

Catheterization is actually the cause of my chronic bladder infections.

• The catheter introduces infectious organisms into my urethra/bladder, and the result is that I have been put on oral antibiotics the rest of my life. Then, WHAT??? Please let me know.  I am depending on you for an alternative treatment.

As I navigate the medical world

With healthcare changes we’ve seen in the last few years, we all feel a bit uneasy about future options for obtaining good treatment. My hope is that I can stay with my doctors. Will I be able to retain my team in the future?

Picture of Trudy Triumph

10. Please get the word out, write more!

• For the writers out there, please write about the symptoms of an underactive bladder… for current and future patients. This is such a commonly ignored/under discussed condition.
• Would you like some ideas? Allow me to let you know what to write about. How about the bladder and the bowel? Unpopular subjects for sure.
• I have offered the suggestion via Facebook and twitter to authors to let me help them write-in a hero or heroine with bladder and/or bowel issues into a storyline, to provide a sense of normalcy for this condition: my condition and the condition of a few million others
• “I think you should write about how common bladder and bowel dysfunction is and the many causes.
• I am not so sure why bladder and bowel dysfunction is such a surprise to patients who previously suffer nerve damage.
• Why does this happen that an underactive bladder has to get really bad before a patient is made aware? i have received many letters from readers of my blog that had not idea that bladder or bowel dysfunction can happen when;
  • backs go out
  • and the many other accidents or illness occurs
• Which comes first fibromyalgia or the underactive bladder? Why does fibromyalgia get all the hype?
• –A person can suffer the symptoms of lethargy, achy muscles, joint pain, depression, loss of appetite and not understand that an underactive bladder is the cause.
• We should see more articles.
• Why in the time of disability rights are people allowed to make wisecracks about a condition that can shorten a person’s life or keep them housebound?
• How many people are misdiagnosed for years? I was.
• Remember when you write, both the public and your peers will be educated.
• Please won’t you be the one who brings this topic into public acceptance? Let’s start the discussion! Let’s talk about how to keep the discussion going? – Broaden the audience participating in the conversation.

Picture of Victorian woman

11. Parting Words

Acknowledge and legitimize my feelings.  I Experience FEAR of this uncharted territory that is also a condition that our society feels free to joke about.

• Look at it from my viewpoint — treatments for UAB could shorten my life, if they lead to chronic kidney failure.
• They are keeping me mobile and healthy for the present, yet I am fearful.
• Spend more time explaining what I can do and what I can expect.
• Don’t make me identify myself with a Victorian woman – a 2^nd class citizen without options
• See me as a person full of life which is how I see myself — the woman I showed you in the first slide, with a family that loves me.
• Most of all work hard, write more, fix the broken things, think out of the box: because I am depending on you!