Trudy Triumph's Neurogenic Bladder Blog

Traveling with an Underactive Bladder

Dear Trudy and Friends of the Group,

Here we are planning to travel to Argentina where my dad waits for me; he is 92 years old. I am very anxious about it. It is my first time to travel with caths. Our plane travel will be very long, and to cross the Atlantic means 12 hours on the plane. I do cath “standard”, so they are the long ones, those which are made for men and not women, although a lot of women, like myself, use them. The question: can this be done in the tiny bathrooms on a plane? Sorry if I am so ignorant or lack imagination, but it is hard for me to see, under these circumstances. I have had to go through many technical problems with my cath!, but now I am doing very well. Thank you for any tip of information i can get from this wonderful group.
Thank you!
With love and hope,

Ana from Israel


Dear Ana,

Glad you are ready to consider travel. I think it’s an important step to taking charge of your life by doing the things you find important. I want to encourage you and assure you that it will be both a fun and exciting time for you and your Dad, and even more so with a little preparation and planning. I applaud you for having the foresight to reach out to the group. Several things come to mind for you to consider, as you prepare for your upcoming trip.

Pre-Trip: I always take an extra form for antibiotics and a pre-signed lab slip from my doctor, that allows me to get my urine tested to see what type of bug I am growing/susceptibility to antibiotics, etc., if an infection starts. A lot of times when we cath it leaves us prone to bladder infections and even if the doctor you visit at your destination will write his or her own lab slip, at least you have an example of what you need for them. This might be especially important when traveling to another continent!

Tips particularly regarding cathing:

I have found some major problems when flying the friendly skies. First obstacle, the automatic flush on the toilets in many international airports.  Sometimes, when reaching down to cath, I trigger the automatic flush. To avoid nasty water contaminating everything, I just hover above the seat and wait to start cathing, once all is clear again. Try hovering above the toilet at home to practice, because your catheter insertion point will likely be in a different location when using different toilets of varying heights, etc.  It is good to practice cathing at home with a short forced “intermission” before you cath, so you will be used to it and won’t get stressed on your trip. It’s important to be ready for whatever lies ahead.

TIP #2 – I have found that airplanes generally have short/low toilet seats in their lavatories. In fact, the first time I tried to use a catheter on an airplane I shot pee onto the floor because it flowed right out and under the short seat while I cathed. So, I want you to be prepared by expecting a likely short distance to work with, especially if you’re using the long catheter, and you will be fine.

TIP #3 – Bring plenty of catheters and pack/distribute them in different places throughout your luggage, so you have what you need in case your luggage is lost or, heaven forbid, stolen. I always thought that if that happened I could just go to a hospital for what I needed. But, that might take time, and when traveling, you can’t always be close to a major hospital. For the life of me I still find it hard to understand why drug stores don’t stock catheters and other “medical equipment”. But, I have been told that it is generally beyond the scope of their business, which caters to carrying merchandise they can easily move/sell. Crazy, Don’t you think? At any rate, it makes life inconvenient/more challenging for those of us who cath daily.

I AM sorry you only have men’s-size catheters at your disposal. There are some really small practical catheters on the market that work great for a woman’s ureter. The one I use is called Speedicath, manufactured by Coloplast. It may not work for your trip, depending on your timeline, but why don’t you email Coloplast directly and see if there are sales reps in your area? You can review the information on this website: Of course, you will need a prescription to get things started with a new supplier. You could possibly have what you need mailed to you. (That’s how I receive my catheters). There is also a new product called Compactcath. This catheter is suitable for both men and women. See more at: Both catheters are pre-lubricated and sterile, and you can easily fit several in your pocket, zipper-pouch bag or purse.

Final TIP #4 – I always carry extra clothes and keep plastic zip-lock (self-closure) bags and wet-wipes on hand, at all times, in case of bladder/bowel mishaps. If you have what you need, your trip will be carefree and you will enjoy peace of mind.

Have fun on your trip, Ana.

How about the rest of you. Any additional trip tips for Ana you’d like to add?

No Trash Can in Stall: Disposing of an Intermittent Catheter

I am going to get real with you and take a moment to express what really comes natural to me: Honestly, “What would Jesus do?”  Here goes:

Not long ago our school district had a meeting for substitute teachers at the local high school where I retired from and occasionally “sub”.  I’ll set the stage:  The auditorium was packed and there was only one woman’s restroom.

When I go to the Ladies’ Room to pee, I ALWAYS wash my hands first. I wonder if it raises eyebrows because to some it might seem a bit out of order. I always wash my hands again, Yes, twice, before and after, my duty is done.

As I cleanse my hands, it always allows me to get the “lay of the land”.  A double sink with paper towels and a trash can beneath, on either end, in this case. The paper towel holder and trash can, were right in front of a full wall mirror.  Multiple stalls, means many seeing eyes. No secret disposing of trash, by golly.

So, I go in and do my business and at completion I notice there is no trash can in the stall! I am now horrified.  I have this long skinny catheter, yellow now, in fact, that still needs to be disposed.

I chastise myself because I usually carry little baggies for this very thing.  I could have put it in a zip top and slipped it in my pocket or purse.  But, in this instance, I did not have one.

Do I wrap it in toilet paper, long and soggy? . . . Then walk discreetly through an ocean of my peers with a dripping tube, as I try desperately not to make eye contact with other women, some of which I have worked with for years, by the way . . . to finally toss my bulky, tattletale, millstone away? Or do I take the easy way out?

These are my choices:

Do I

a) humiliate and expose myself to prying eyes and the possibility of questions I don’t want to answer


b) take the cowardly route?

Remember, the restroom is packed with women that I want to look cool in front of . . . AND there is a full length mirror in front of the trash can. [No secrets there].

I’m sorry to report: I just kicked the offending object behind the toilet.  If you are a custodian, I indeed lament my deed. Please accept my apology — I in no way feel proud. I was backed into a corner.  It was simply a survival tactic.

Just as a person bound to a wheelchair fights for sloped curves and wheelchair access, I take my fight to: “Within the public restroom stall”.  My disability is hidden for the most part.  Many don’t know.  Please, if you have any say in how a public restroom is set up, please insist that a trash container is incorporated into the stall itself. It provides a certain amount of hygiene and privacy.  Basically, it allows me to save face.

Neurogenic bladder comes in all kinds of shapes and sizes.  Some of us use aids. Please help us dispose of them privately, and safely.


What would you have done?

Endometriosis can cause Bladder and Bowel Problems

Endometriosis can cause bladder and bowel problems, but most prominently, it results in intense pelvic pain and monthly cramps for an estimated more than 6 million women, in the US, alone.

Today I feel compelled to share some thoughts and memories with you.  As a high schooler, my first symptoms of menstruation, as a teen, were very painful periods. The first day I would be in so much pain due to cramping that I would need to lay down and because of the pain, I almost always vomited.  When I was older, I had a difficult time getting pregnant and then after I endured several miscarriages, wonderfully, I had 2 babies in a row. After that my painful periods went away.

It is unlikely my own bladder and bowel symptoms stem from endometriosis, but this topic is newsworthy all the same because it does raise havoc on one’s body and many times, women do not realize the painful periods and painful sex they are experiencing are caused by it. Endometriosis is a medical condition in which functional endometrial tissue (the mucous lining of the uterus) is present in the pelvis outside of the uterus. When a woman with this condition has her menstrual cycle, the tissue grows and bleeds even though outside of the uterus, it cannot easily run out of your body.

Remember often times pain is a message.  Help can be found, the squeaky wheel gets the oil.

Get help if you need it.

To learn more, visit, and for more information. Take the opportunity to join the conversation by sharing your story #MeinEndo

Dear Rush Limbaugh, It is ok to Talk about Accidents at Work!

Dear Mr. Limbaugh,

On Wednesday, September 6,  I was listening to your program when you mocked a reporter for sharing on the news about a bowel accident he had while in the Press Room at the White House.  You said that it is not ok to talk about these things.

I disagree.  It is important to talk about this problem because so many suffer from this condition.  The embarrassment it causes is crippling.  To make matters worse, some are even stricken with fear about sharing these symptoms with their doctors.

This condition does not only happen if you eat contaminated food from an unlicensed street vendor, it can happen as we age, have a stroke, develop Multiple Sclerosis, I truly could go on and on.

You shamed families who have loved ones and do not know where to turn when this problem arises because they are horrified at the thought of admitting they have this problem.

I feel so strongly about this topic, I wrote the book, “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel. The book is my story with added information from medical research librarian Julia Parker, MS, MLIS.

I wrote the blog for years under a pen name Trudy Triumph because I was so embarrassed by my condition. When the book came out I decided to add my real name, JoAnne Lake, because I felt that people like me need a voice.

Do I feel a bit uncool at times? Honestly NO, not now. I feel like we are uncharted territory for the trampled upon and now we need to kindly ask for our rights as well. Our rights to share our concerns, ask for help at work, ask for grace at times.

Yes, many of us need aids when toileting.  Many of us carry extra clothes.  We are your mothers, fathers, teachers, neighbors, and even reporters. We need compassion, not to be told to keep quiet.

I plan on sending you a book.  Hopefully it will give you an insight on those who suffer, mostly quietly, but need a voice all the same.

Kind Regards and always a fan,



JoAnne Lake aka Trudy Triumph

Neither a Mirror or Holding the Labia Help Women while Using an Intermittent Catheter

Question to Trudy

I had botox for overactive bladder. I am now retaining urine, a side effect I was told only occurred in 1 in 100 patients. I have had a Foley catheter for 5 weeks. They say the botox could take up to 6 mos. to wear off so I am being encouraged (feels more like forced) to learn to self-cath. I tried it on two occasions and failed to find the proper location. I can’t figure out how to hold a mirror and hold my labia open with only my left hand. I am terrified of the whole process so my right hand is very shaky as well. I had a panic attack on the last try. They reluctantly replaced the Foley and I know I will be expected to try again at my next appointment in a week. I want to flat out refuse to self-cath. It scares me and I feel humiliated by the whole thing. If this is supposed to be a short term problem, I don’t see why we need to push (no pun intended) the self-cath if I am so stressed out about it. I am a 62 yr. old woman and I feel like a 2 yr. old. Am I being reasonable to refuse the self-cath if a Foley can be used instead?

Trudy’s Reply

I want to point two things out to you. Neither a mirror or holding the labia apart really helps a women use an Intermittent Catheter.

Our body is built to work with us, not against us.  This is why in all cultures, women squat to pee. On the toilet we squat, too. If you don’t hold your labia to pee then you will not need to hold your labia when you cath.   When we sit on the toilet and spread our legs the labia naturally opens.  When you see pictures of women needing to hold their labia while inserting an intermittent catheter I guarantee you that it was thought up by a person that has not thought it through.  When you urinate, the flow of urine is unobstructed. I rest my case

The use of a mirror is unnecessary, truly.  I wish women were not trained this way. Trust me, you can find parts of your body by touch. I am sure a male  thought this up because the thought of never seeing ones private parts is incomprehensible to them.

 When you get ready to insert an intermittent catheter:

  1. Wash your hands really well.
  2. Sit on the toilet with your legs spread or squat if you do not have a toilet.
  3. As you put your catheter near your labia, put your ring finger near your your upper leg (by your labia).  Use the same spot every time.  In the beginning, this will act as a marker. (Your urethra is between your clitoris and your vaginal opening).
  4. Gently probe the area for your urethra. I use the same finger, my ring finger to guide the catheter to my urethra. (For me it is off to the side a bit because of stitches which were the result of the use of forceps during the birth of a ten-pound baby).
  5. Gently probe the area and insert the catheter.
  6. You will find it, I promise.

I understand that there is a lot of stress the first time few times you do this.  It is hard. I used to sweat buckets the first few times. But, rest easy, it will become second nature. I also ended up being a bit sore, initially, because I probed a bit too hard, in the beginning.

Advanced Advice

If you sit in the same position on the toilet, the area around your urethral opening will be in the same place every time.   Remember, if you end up going on a hike or need to use a porta-potty, the spot you need to find will be shifted; fear not, you will find it.  That is why I suggest that after you get comfortable with the same old, position, shift yourself so you do not fret the first time you venture out.

TIP: When I am camping and do not have access to clean water, I pack condoms to put over my ring finger as a barrier, because they are sterile and my hands are not.


I also want to add a note about botox.  Some women with an overactive bladder find great relief with botox.

I am sorry that you are diagnosed with a underactive bladder (UAB), for even a short while.  It is what I have as well, although I will probably always have UAB.  The good news for you is that now you understand what is going on. There are many, not as lucky as we are who have a sluggish bladder and suffer symptoms, but do not know that their difficult symptoms stem from a broken bladder. You are one step ahead of them. You’re proactive and taking care of your problem.

In the book I wrote with Julia Parker MS MILS there is so much more about catheters, including Foley Catheters that you might like to read.  This sample below is offered as an encouragement to stay the course and embrace your new life with intermittent catheters.

From the book “Beyond Embarrassment”

Knowledge Nugget

Advantages of Clean Intermittent Catheterization

Sterile intermittent catheterization was developed in 1947, and, by 1966, a long- term study concluded that this method is state of the art in the management of Neurogenic Bladder. The advantages of clean intermittent catheterization (CIC), which is regarded as the most effective way to aid in bladder-emptying disorders, include a lower risk of urinary tract infections (UTI), urosepsis, and renal damage, besides providing autonomy and mobility. [8,9,10] Prior to the availability of sterile intermittent catheterization, renal failure was one of the most frequent causes of death in spinal-cord injury patients, besides the abnormal backflow of urine back up into the ureters from the bladder (vesico-ureteral reflux). (Pressure within the kidney itself can severely damage it and prevent normal function.) Because urethral catheters are the most frequent cause of UTIs in hospitalized patients, [11] it is important to adopt a system that reduces that risk. Sterile intermittent catheterization, when used long term, reduces renal scarring and bladder calculi (stones), [12] which are common in bladders containing stagnant urine.

Please keep in touch and let us know how you are doing!

References and Notes

8 Spinu, A , et al. “Intermittent catheterization in the management of post spinal cord injury (SCI) neurogenic bladder using new hydrophilic, with lubrication in close circuit devices—our own preliminary results,” J. Medicine and Life 5, no 1 (2012): 21-28

The use of Clean Intermittent Catheterization is so well accepted in some parts of the world that they are provided for free by the health agencies of many countries They are viewed as an application of the concept of the inseparability of biomedical and social aspects in human functioning, based on the system established by the World Health Organization in 2001, the International Classi cation of Functioning, Disabilities and Health (ICFCH) For example, since 2008, the Romanian National Assurance House (the Health Plan of Romania) has fully supported the unlimited use of four closed-circuit hydrophilic catheters per day for patients diagnosed with Neurogenic Bladder

9 De Ridder DJMK, Everaert K, Garcia Fernandez L, et al. Intermittent catheterization with hydophilic-coated catheters reduces the risk of clinical urinary tract infections in spinal-cord injured patients: a prospective, randomized, parallel comparative trial Europ Urology 2005 48: 991-995

10 Vapnek JM, Maynard FM, Kim J , “A prospective randomized trial of the LoFric hydrophilic-coated catheter versus conventional plastic catheter for clean intermittent catheterization,” Journal of Urology 169 (2003): 994-998

11 Tenke P, Jackel M, Nagy E Prevention and treatment of catheter-associated infections: myth or reality? EAU Update Ser 2 (2004): 106-115

12 Donnellan SM, Bolton DM “The impact of contemporary bladder management technique on struvite calculi associated with spinal cord injury ” BJU International 1999 84(3): 280-285

Where is MY help for Kidney Disease?

I had my physical this week and my blood levels showed my kidney function looked worse than last year. I am not getting back-to-back bladder infections any longer because I take an antibiotic daily.  I thought that my kidney function would be better. I realize that I am far from dialysis but I am creeping towards it, all the same.

Stage 1 & 2 kidney disease is a bit of a wake-up call but many live with this and have no idea their kidneys are not working at a normal level.  I knew I had been categorized “Stage 3” kidney failure over a year ago and I had worked hard to ensure my kidneys did not grow worse. Now, my blood results show that I am edging back towards Stage 4.  This sucks!  Of course, I am not happy.  What to do?  My doctor said he was happy that I look stable. My numbers dropped. How is that stabilized?  I emailed him, “Is there anything else I can do?” . . . Evidently not.

I have been sharing my private thoughts with you folks for almost six years now.  I am not about to quit because I am a bit embarrassed about this.  No, I am not “Beyond Embarrassment” on this one.  I feel a bit ashamed because instead of feeling peace, I do feel somewhat frustrated and afraid.

Why is there nothing I can do?  As my numbers get worse, I find myself closer to dialysis!

Now I ask the sinister question . . . Is it possibly because there is more money in dialysis than keeping patients out of it that my doctors allow my numbers to worsen?  Where are treatments for those of us who have an “underactive bladder”?  I see the commercial on TV, “I gotta go, gotta go, gotta go.” That commercial is for those with overactive bladder. There are meds and treatments for patients with an overactive bladder. But . . .

What about me?  What about those of us that have a completely dead (flaccid) bladder and that edge toward kidney failure because of it?  We don’t have to “go, gotta go, gotta go.”  We need a catheter to pee.  I see catheter commercials on TV.  Is there any more I can do? Where is MY medicine? Where is MY magic procedure?

I can’t even take vitamins because I not only have an underactive bladder, I also have an underactive bowel.  So many supplements play havoc with my digestive system.  I wonder what research is being conducted to help those of us with an underactive digestive system to stay comfortable and remain healthy?

Do you know how common this condition really is?

 Look at the ways you could climb into my boat.

Taken from the book Beyond Embarrassment. Pages 197-199

Risk Factors for the Development of a Neurogenic Bladder, Grouped into Eight Health Area Headings:

Health Area Category Risk Factors Associated with Neurogenic Bladder

AGING Kidney Stones Pelvic Organ Prolapse Post-Menopausal Changes to the Vagina Erectile Dysfunction (Men) Prostate Enlargement (Men)

CANCER Bladder Carcinoma  Central Nervous System Tumors Human Papillomavirus-induced Cancer  Urothelial Carcinoma (Transitional Cell Carcinoma     (TCC))

CHRONIC HEALTH   Ankylosing Spondylitis (AS) CONDITION Chronic Inflammation of the Urinary Tract      (Interstitial Cystitis or Cystitides) Congestive Heart Failure Severe Constipation Crohn’s/Colitis Diabetes Mellitus (Diabetic Neuropathy/     Dysautonomia) Lupus Osteoarthritis Paget’s Disease Paresis Endometriosis

HEREDITARY   Behçet’s Disease Marfan Syndrome MTHFR Gene Mutation (Methyl-Tetrahydrofolate     Reductase) Spastic Paraplegia (Hereditary) Spina Bifida Tethered Cord Syndrome Visceral Neuropathy (Familial) Wolfram Syndrome

INFECTIOUS DISEASE   Encephalitis Guillain-Barré syndrome (GBS) High Fever Resulting in Delirium HTLV 1&2 Lyme Disease Meningomyelitis Polio Schistosomiasis (Bilharziasis) Spinal Epidural Abscess Syphilis Tuberculosis (chronic); Ureases (bacterial) Urinary Tract Infections (chronic)

NEUROLOGICAL   ADHD Disease  OR   Alcoholism or Chronic Drug Abuse BRAIN-CHEMICAL   ALS IMBALANCE Alzheimer’s Disease Anxiety/Depression Dementia Inflammatory Demyelinating Polyneuropathy   (chronic) Multiple Sclerosis Neural Lesion Neurosarcoidosis  Parkinson’s Disease Stroke

SUBSTANCE ABUSE/   Vitamin D (Kidney) VITAMIN DEFICIENCY/ Drugs or Alcohol DRUG EFFECT  Heavy Metal Poisonin  Overeating  Prescription Medications  Smoking

TRAUMA   Accidental Injury to the  Brain and/or Spinal Column (SPI)  Cauda Equina Syndrome Cerebral Palsy  Colon Surgery  Female Genital Mutilation   Fistula  Herniated Disks  High Impact Exercise Postpartum Surgical Procedures  Rape  Spinal Cord Trauma Traumatic Brain Injury (TBI) Vaginal Delivery abuses of bladder

From the book “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel” by JoAnne Lake with Julia Parker

So here is my point.

There are so many people out there who feel rotten because of an underactive bladder and what they don’t know is that not only are they suffering, their kidneys are suffering . . . all without pain. The damage is being done all the same.

That is the interesting thing about kidneys.  There is little pain. No real wake up call.  An underactive bladder is a real UNADVERTISED and UNDERVALUED condition.  We need more hype!

Is it OK for doctors to just watch the nightmare and wait for us to go on dialysis?


Why do I have to wait?  Is this about money? Is there really nothing that can be done?  I have a lot of confidence in my doctor, well . . . maybe.  What am I missing here?

Will someone please explain it all to me?

Depression and a Neurogenic Bladder and Bowel

Depression is a real condition for those of us who live with a chronic condition.  Just yesterday, Tuesday, I invited a friend to walk with me.  It turned out that I ended up going by myself.  It was so good that I did because, I ended up having an accident the furthest point from my house. I was embarrassed of course, but imagine if I had someone with me?  That would have made the situation so much worse.My problem was that I did not empty my bowels before I started my hike. This incident  was a great reminder to me to follow a “regular” routine in the morning.  Usually if I do that I can have a great safe day.

I deal with a catch twenty two.  Rocks can form in my gut if  I do not exercise but when I do, things happen.  I can pass gas during yoga or like yesterday I can poop my pants because my body does not behave. I try my best not to get down, but sometimes it happens. I can feel depressed.

That is one of the reasons I wrote the book, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel.

My story of taking my life back from bladder and bowel problems.  It has personal stories, health tips, practical help, and the latest medical research.  A ready resource for women and parents of children who live with a chronic illness—and anyone who faces a challenging physical condition—My hope is to educate, encourage, and inspire.

Well needless to say yesterday evening I fell into a bit of a slump. After prayer I was reminded that God made my body just this way,  Tomorrow is a new day and if I did not try I would never succeed.

Excerpt from “Beyond Embarrassment” an insight of how I felt when I was first diagnosed and how I deal with depression.

  1. Conquest over Depression

The spirit of a man will sustain his infirmity;
but a wounded spirit who can bear?

—Proverbs 18:14 (KJV)

How many people know something is physically wrong with them, but either their symptoms are dismissed or tests to diagnose the problems are inconclusive? Not surprisingly, when weeks, then months, and even years of illness pass without a let up in symptoms or a name to place on them, many of us start feeling depressed. That’s certainly what happened to me when I was living with undiagnosed Neurogenic Bladder.

A little later in the chapter…

My Breakthrough, after my diagnosis

Finding peace and real help for my depression and isolation started by taking the step of journaling. Writing about my dilemma was the only outlet I had. I journaled because I felt I had no one I could talk to. I filled pages with how I felt physically and emotionally, sometimes as letters, sometimes as prayers.

This isolation I felt was, of course, unfounded. The sad thing is that I did have some people in my life who would have been willing to listen to me, but I was just too embarrassed to confide in them. I was afraid I would become the butt of jokes rather than the recipient of much-needed support and sympathy. I wanted them to understand the magnitude of how bad I was feeling and how having a neurogenic bladder and bowel was not as funny as seen in the media.

During this mind-blowing time, I took a writing class. The teacher encouraged me to journal. She gave us ideas for keeping the tools of the trade handy: our computers, pens and paper, and encouraged us to let our thoughts come — to put them in a place where they would not be gone forever. For our assignments, I turned in pages and pages of my thoughts. I wrote about being embarrassed by voiding situations. I wrote about the doctors I appreciated and some that I did not. I scripted ideas of how I could carry my catheters safely around.

As I processed the information I was garnering about myself, I got a clearer picture of what I needed to do to cope with my newfound medical condition. My shame was lessening because, instead of running from it, I began embracing it. I still did not know how to get past my fear of being ridiculed if I confided in someone I knew. I could reveal things to my writing teacher because she was a stranger and was reading my thoughts in my absence rather than listening to me face-to-face. The situation felt much less threatening than talking directly with a family member or friend.

Beginning to Connect

I was hooked on writing. I moved my journal to an anonymous blog format, thanks to the help and ease of using Typepad, my first online blogging tool. I had few computer or writing skills, and I was an even worse speller. However, I did have thoughts to share, so I pressed on. Anonymity was key: I was still too humiliated to share all of my symptoms openly with my doctors, let alone with my friends or even my husband. The accidents that happened in public places were too raw to share directly with anyone.

In the early days of the blog, I mostly wrote about things I was having a hard time discussing with anyone else. I got a funny e-mail from a reader who said, “I can’t believe you write about this stuff.” But I needed an outlet, and, through the Internet, I found others who understood the emotional prison in which I found myself. I found solace by sharing how I coped with even the basic logistics of my chronic illness.

I decided to choose a pen name because I was too humiliated to use my own name. I picked “Trudy” because a childhood friend had a really nice big sister by that name. She was always kind to us little kids, put up with our tagging along, and enjoyed listening to our chatter. She even married a doctor. So, as the new Trudy, I would be armed with medical knowledge to tear into this Goliath of a topic that threatened to overwhelm my life.

Then the most amazing thing happened. As I blogged about my condition and started learning about others in similar situations, I started feeling normal again. I became less humiliated by my physical challenges. I started getting e-mails from women like me who felt like they were at the end of their ropes. Before I was diagnosed, I did not realize that many paraplegics have nonworking bladders and bowels. I did not know that bladder infections could hurt so much and, more importantly, I did not know I would ever, in a million years, meet such amazing and inspiring people through my own bladder and bowel issues.

If you deal with a situation similar to this, please do not give up.  Keep moving and know that you are not alone.

Reliable Medical Information for the Patient from a Biosleuth

Does it Keep You Up at Night? How to Find Reliable Medical Information In-Between Doctor Appointments

So, you had your doctor’s appointment in the morning and you’re replaying the appointment again in your head. The doctor reviewed your health status and gave you a list of “To Do” items that he’d like for you to try:
• Eat more fibrous vegetables and less red meat
• the ever touted More Exercise
• and “#^*^+*%$@”? – What does that even mean?
• And what about ____? (I just thought of the burning question I wanted to ask)

It’s okay, I have Options — I can:

A. Call back and schedule an appointment and wait for 3 weeks
B. Call his nurse and see if she can pass my questions along to the doctor and wait for a call back
C. I can proactively seek information from authoritative health websites and read up a bit on the topic of my question so I am better prepared when I get that call back and for my next appointment with the doctor

BUT, How do I know I am reading reliable information?

A search of the Internet should always be done with the thought in mind that ANYONE can be the author behind that webpage. In fact, if you are reading this blog, do you know who I am? I am a Medical Research Librarian with a subject specialization in Bio-pharmaceutics and a Public Health degree in Pathobiology [which translates to “Prevention of Infectious Disease”]. Nice to meet you! I am co-author of the book, Beyond Embarrassment: reclaiming your life with neurogenic bladder and bowel, which grew out of the posts on this blog and addresses the health concerns of Trudy and others like her, who deal with continence issues every day.

Trudy and I have just returned from the 2017 BlogHer conference, where we were challenged and inspired to keep this blog vibrant. If you are a visiting blogger, perhaps checking out for the first time – Welcome! We hope you continue to visit our page . . . please leave a comment for us, so we can reach out and . . . if you have a suggestion for a future post, we’d love to hear it.

Getting back to that burning question . . . I’d like to discuss some options you have regarding finding good reliable health information with tools available to anyone with a computer connection or smart phone. I am kicking off this series of posts, which will explore the use of medical information research tools over the course of the next few months.

NOTE: if you don’t have ready access to a computer at home, you can visit your local Public Library or Consumer Health Library near you (FYI – state-funded university libraries also usually provide “Public terminals”). You might have to sign up for a session. The reference librarian on-staff can help point you in the right direction! Use these public resources – they represents you tax dollars at work!

Where do YOU usually start a search for Information?

Google Search – Google is by far the leading search engine people turn to – with an estimated 1,800,000,000 monthly users, followed by Bing, Yahoo, and Baidu, each with an estimated 480 – 500 million monthly visitors [see the May 2017 eBizMBA Ranking,]. So, you likely start with your “favorite” search engine to find information . . .

Books – Alternatively, many people look for a health book that might have “the answers”.

Trudy and I live in the Pacific Northwest, so often, we turn to Amazon to browse their “Catalog”.
An Amazon search retrieves 2 books under “Underactive Bladder”
– the textbook, by that title, written for Urologists by Dr. Michael B. Chancellor
– our book, written for the patient, “Beyond Embarrassment: reclaiming your life with Neurogenic Bladder and bowel”

– “Neurogenic Bladder” retrieves 51 items, the vast majority of which are written for the physician.

Knowledge Nugget: to force the search engine to combine multiple words as a phrase, the use of quotes is the general “standard”. Put any “phrases in quotes” to avoid/reduce irrelevant results. (I encourage you to try your search with and without quotes to see the difference in the results you retrieve!)

Use of Authenticated Specialty Sites to Search for Health Information – Here are a few of many sites you might choose from to locate current vetted information that has been reviewed by physicians in an effort to provide the most reliable and accurate information available (as far as current medical practice/understanding). Over the course of this series of blogs on Retrieval of validated health information for patients/consumers,

I will explore and demo each of these resources.

• MedlinePlus [] provides curated consumer health information in English and Spanish

• MeSH [Medical Subject Headings;]

• Medscape []

• CDC “Get Smart” Pages For Patients []

• Mayo Clinic Patient Care []

• PubMed []

• PubMed Health []

WebMD – Better information. Better health. []

Apps for your Smart Phone

• Medscape

• WebMD

• Clinical Trial Search []

• PubMed4Hh [for Handhelds]

• PubChase

• Unbound Medicine Prime

• Corporate Sponsored Health Information

• MedInfo (Amgen)

• Medical Info (Novartis)

• Merck Manual for Consumers (Merck & Co. Inc.)

Let’s begin with an example search within MedlinePlus []

MedlinePlus launched in October 1998, by the National Library of Medicine to provide an online tool that is both easy to use and supplies reliable health information, in a format accessible to the general lay-person. (In contrast to PubMed, which was originally geared toward the medical professional.) MedlinePlus initially provided 22 health topics in English, which has expanded to almost 1000 health topics in English and Spanish, including reference books, government health agency websites and research foundations pertinent to the topic and offers links to health information in over 40 languages [Wikipedia, accessed June 24,2017,]. MedlinePlus is always a good choice of basic information when you are getting started on a health-related information search and you can depend on the fact that the information is being updated as medical knowledge progresses and is not biased.

Type the address into the browser:
For the sake of an example – Let’s find relevant information related to problems with controlling bladder contractions. Type “Underactive Bladder” or “Neurogenic Bladder” in the search box in the upper right-hand corner and hit “Go”

The first result is usually the article on the topic from within the MedlinePlus collection. In this case it is an article from the medical encyclopedia on “Neurogenic Bladder” [].
Let’s take a tour of the information path you might follow to find more on a variety of questions that possibly keep you up at night . . .

Keep scrolling down the page, and you’ll see Symptoms, Treatment guidelines and Support Groups

By clicking on the link to Organizations (under Support Groups), you discover even more information resources and organizations involved in supporting this patient community.

You can Further Explore any topics in “Blue” which take you to a new page. This is how you discover a wealth of information . . . just by following “links.”

Click on the Main Heading, Urinary incontinence – to find out even more:

This page contains a wealth of information! Besides Diagnostics and Tests, you’ll also find information on Treatments, Patient groups, Clinical Trials and Patient Handouts with links on the right side-bar to information in various languages including Arabic, Chinese, French, Russian, Somali and Spanish.

If you click on the related broader topic heading, Urinary Tract Health, you are taken to a page hosted by another government institution (The National Institute of Child Health and Human Development, NICHHD) that provides information on some basic health problems resulting from a bladder that is not functioning normally – including UTI (Urinary Tract Infections)


Go back to the previous site on MedlinePlus, and continuing down to “Specifics” –

See the link to Bladder Control Problems & Nerve Disease (which takes you to another major source of information provided by the US Federal government on Kidney and Urinary Tract disease (NIDDK – the National Institute of Diabetes and Digestive and Kidney Disease).

The page describing Underactive Bladder, specifically, Urinary Retention is linked from the left-hand navigation bar for “Urologic Diseases” from this page:

This page contains a wealth of information . . . keep reading to hopefully find some answers.

But, if you need still more information, you can turn to another tool to dig deeper — looking at still more sources of information. Don’t forget to check the source behind the information your read – it’s a basic practice, “Be Discriminating”, when reviewing anything on the Internet. We’ll continue our look at other sources . . . next time!

Julia Parker

Aging and Bladder Problems not for the Feeble in Spirit

“Spring passes and one remembers one’s innocence.
Summer passes and one remembers one’s exuberance.
Autumn passes and one remembers one’s reverence.
Winter passes and one remembers one’s perseverance.” 

Yoko Ono

Many times, bladder and bowel problems go along with aging.  My birthday is this week and to be honest with you, aging has been a bit on my mind.

There is a significant impact to maturing.  It is not for the weak in spirit. How about losing friends?  Disappointing doctor appointments? The constant pain we feel in our bodies?

Last week I noticed on Face Book that a friend was moving from her big old house, close to mine, and moving to a nearby island.  I felt heartbroken.  I had so many fun memories connected to that woman and her home.  I stopped by her garage sale to say goodbye, plus to tell her how much I will miss her.

She looked me dead in the eye and said, “I have not seen you for three years.” I felt a bit guilty about this. Had so much time really passed?  How did this happen? It was only yesterday that we were socializing at her house. Well of course, three years passed in the blink of an eye. This is true because as a wife, mother, grandmother, patient, writer, gardener, and bottle washer, my life tends not to be my own.  I admit I get so busy with so many areas of my life, I neglect to play with friends these days.

Standing in her yard sale I saw the wine glasses we sipped from and I felt a bit like I did when I left my youngest child’s grammar school for the last time. “You mean the beautiful, noisy, joyful, place will go on without me?”  Wasn’t this supposed to last forever? In the blink of an eye.

I felt a sheer loss at my friend moving away.

But that does not mean that my remembrances of wonderful times do not surround my life with warm happy memories that make me smile when my body does not cooperate!

So here we are.  Our recollections are everything.  They bring us so much joy.  When people look at me they cannot see the playful, silly, girl inside.  But she is there.

I like remembering.

Yes, Debbie, I have not seen you in three years.  Life happens.  Doctors’ appointments and families take a great deal of time.  But honestly, we had so much fun, a great deal of laughter.  I know someday I will move out of my big old house as well.  Perhaps some friends will stop by to remember the happy times together.  I hope so.

Aging can be positive too.  When I had a healthy bladder and bowel I TOOK THEM FOR GRANTED.  My kidneys were completely ignored before they started going south. I took my friends for granted, perhaps for lack of perspective and living in the moment.  I had no idea how fast this part of my life would flee. Now that I am older I value all of it in a way that I never have before.

So many losses as we age.  Thank goodness for our wealth of happy reminiscences and the new joys that flow into our life.

My attitude needs to be, I’m OK, hang loose!

What is yours?


Bladder Problems and Female Genital Mutilation

Alright folks, fasten your seat belts, this is not fun to read, but in order to be thorough, I want to share with you my take on a topic that has been in the news lately.

Because of my blog, I spend a lot of time trying to understand the causes of bladder and bowel problems.  My dear sister, a crusader, has made me aware of Female Genital Mutilation that is occurring in some populations now, mostly from Africa, happening right here at home. She works in a school district and says the practice of Female Genital Mutilation often happens during summer vacation, to girls, ages five to ten, in some ethnic groups.

Imagine my dismay when I discovered that my state, Washington, does not have laws to protect these girls and my city is one of the leading cities in the United States where this occurs.

I want to do my part in letting people know how this procedure can cause  an overstretched bladder due to urinary retention. This procedure can even lead to death.

Women who have gone through the rite experience difficulties during childbirth besides other medical complications like kidney infections that often lead to kidney failure and at times, death.”
Read more at:

School teachers are mandatory reporters so before you think you are doing a culturally acceptable act by not reporting, let me share with you why we need to take a stand against this practice.

First one might ask why is this done anyway? I am told the young girls are told the reason is to get rid of germs. Perhaps the real reason is to render the child nonsexual to keep her chase for her future husband. A justification is that “Jews and Christians circumcise boys”  In our culture, “We keep it even, because both boys and girls are circumcised.”

They treat each sex equally.

Is that so?

Let’s be clear.  They do not cut the penis off for the boys, just the foreskin.  After the procedure sex is pleasurable for boys.  For girls much more happens, so I am not sure how this is the same.

Here are some facts:

EAST AFRICAN MEDICAL JOURNAL, Volume 69 Number 9: Pages 479-482,
September 1992.

“In history, the practice of Female Genital Mutilation, first appearing in the pharaonic era of Egypt, female circumcision was first discovered in ancient Egyptian mummies in 200 B.C, then in the pre-Islamic era the custom was widespread in Egypt, Arabia and along the coast of the Red Sea. Nowadays it is practiced in many African countries.” 

 Female circumcision is performed in three different ways:
The Sunna type is analogous with male circumcision and consists of the excision of the prepuce of the clitoris.
The clitoridectomy type consists of the excision of the clitoris sometimes with parts of the minor labia.
The excision and infibulation operation means excision of the whole clitoris, the minor labia and the internal faces of the major labia. The remains of the major labia are then stitched together and a small opening left at the lowermost part of the vulva. Sometimes this opening is measured by a piece of wood which is about the thickness of a match stick. Urine and menstrual blood dribble through that opening and this entails serious consequences to the gynecological health of the woman. Immediate medical complications are frequent and often serious. They are hemorrhagic, infection and urinary retention.”

Ok I can hear it now… You are asking what the heck does this have to do with neurogneic bladder and bowel? 

This is the part, my main point…

 “Thirty-nine percent of the interviewed women had experienced significant complications after circumcision, most commonly hemorrhage, infection or urinary retention.”

Hibo says, “Urinary retention is what I have.  My bladder blew up like a balloon.  In case of our sisters who undergo FGM, the cause of urine retention could be caused by a stricture in the urethra and thus causing the bladder to expand little by little.”

“Thirty-seven of the women reported a late complication of circumcision. Among these complications were dermoid cyst at the site of the amputated clitoris, urinary problems such as pain at micturition, dribbling urine incontinence and poor urinary flow.”


Urination problems: These may include urinary retention and pain passing urine. This may be due to tissue swelling, pain or injury to the urethra.

 World Health organization 

Here is another article.

‘This is what it’s like to pee after female genital mutilation’

24 April 2016

 From the section Magazine

In today’s Magazine

Some 200 million women and girls across 30 countries have been affected by female genital mutilation (FGM). But how do survivors live with the pain of peeing, periods and childbirth?

The first time you notice your physicality has changed is your pee,” says Hibo Wardere.

Hibo, now 46, was subjected to what is defined by the World Health Organization (WHO) as “type three” mutilation when she was six. This means all of her labia were cut off and she was then stitched together, leaving a tiny hole she compares to the size of a matchstick. Her clitoris was also removed.

She grew up in Somalia, where 98% of women and girls between 15 and 49 have had their genitals forcibly mutilated.

“An open wound rubbed with salt or hot chili – it felt like that,” she recalls.

“And then you realize your wee isn’t coming out the way it used to come. It’s coming out as droplets, and every drop was worse than the one before. This takes four or five minutes – and in that four or five minutes you’re experiencing horrific pain.”

Hibo came to the UK when she was 18, and within months visited a doctor to see if they could relieve the pain she experienced when she passed urine and during her periods.

Her translator didn’t want to interpret her request, but the GP managed to understand.

Eventually Hibo underwent a procedure called defilation, when the labia is opened surgically. This widened the hole and exposed her urethra. It is by no means an outright fix, and can never restore sensitive tissue that was removed, but it did make it slightly easier to urinate.”

Let me end this lesson with this thought.

Before you begin to think that this only happens in one area of the world, let me tell you about a Victorian, London doctor who became convinced that “nearly every female malady(examples being hysteria, epilepsy, unable to sleep) was the result of peripheral excitement of the pubic nerve centering on the clitoris”  

Bill Bryson, At HOME

Page 330-331

 “His solution was surgically removing their clitoris and sometimes removed ovaries, without even telling these women. Needless to say, he lost patients on his operating table and was removed from his practice when his evil deeds were discovered.”

Call to Action:

  1. Be on the look out and take a stand against this barbaric custom here at home. Report abuse when you see it.
  2. Urinary retention sneaks up on a person.  The bladder gets bigger and bigger and then the nerves start gong haywire. OK, I know, remember, I am not a doctor, my point is that urinary retention is a sneak up condition and can cause a lot of havoc if not treated.  Spread the word.
  3. There are many conditions that can cause an underactive sluggish bladder.  Many can’t be prevented but some can be.  Please let’s do our part to protect our little sisters.
  4. 4. We need a law on the books to make this practice illegal. Look at the map above. Does your state have a law in place?

Other source that explains the devastation to a woman’s kidneys because of FGM.



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