Trudy Triumph's Neurogenic Bladder Blog

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?

WHERE IS THE INTERVENTION?

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
AND/OR
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 TrudyTriumph.com 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, http://www.ebizmba.com/articles/search-engines]. 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 [https://medlineplus.gov/] provides curated consumer health information in English and Spanish

• MeSH [Medical Subject Headings; https://www.ncbi.nlm.nih.gov/mesh/]

• Medscape [http://www.medscape.com/]

• CDC “Get Smart” Pages For Patients [https://www.cdc.gov/getsmart/community/for-patients/index.html]

• Mayo Clinic Patient Care [http://www.mayoclinic.org/patient-care-and-health-information]

• PubMed [www.pubmed.gov/]

• PubMed Health [https://www.ncbi.nlm.nih.gov/pubmedhealth/]

WebMD – Better information. Better health. [http://www.webmd.com/a-to-z-guides/common-topics]

Apps for your Smart Phone

• Medscape

• WebMD

• Clinical Trial Search [clinicaltrials.gov]

• 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 [https://medlineplus.gov/]

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, 
https://en.wikipedia.org/wiki/MedlinePlus]. 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: https://medlineplus.gov/
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” [https://medlineplus.gov/ency/article/000754.htm].
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.

A.
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)

 

B.
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
Julia@trudytriumph.com

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

https://www.goodreads.com/quotes/tag/aging

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, TrudyTriumph.com 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: https://www.standardmedia.co.ke/article/2001239366/female-genital-mutilation-hope-at-last-for-suffering-victims

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.

http://www.cirp.org/pages/female/dirie1/

“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.”

————————————

http://www.who.int/reproductivehealth/topics/fgm/health_consequences_fgm/en/

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

http://www.bbc.com/news/magazine-36101342 

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.

https://www.vox.com/2014/7/24/5933163/seven-facts-about-female-genital-mutilation

 

Beyond Embarrassment Free on Kindle May 21-25

Allow me to give you the eBook,

“Beyond Embarrassment.”

My husbands birthday is tomorrow so giving is in the air.

Please enjoy and share this with your friends.

Free on Kindle May 21-25

“Beyond Embarrassment: Reclaiming Your Life With Neurogenic Bladder and Bowel” by JoAnne Lake with Julia Parker MS, MLIS and Lora Plaskon MS, MD

Start reading it for free: http://a.co/gVAq2tZ

Download Kindle for Android, iOS, PC, Mac and more

http://amzn.to/1r0LubW

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Amazon .com

https://www.amazon.com/Beyond-Embarrassment-reclaiming-neurogenic-bladder/dp/0996430547/ref=sr_1_1?ie=UTF8&qid=1494263656&sr=8-1&keywords=beyond+embarrassment

Kobo.com
https://www.kobo.com/us/en/ebook/beyond-embarrassment-1

King County Library system
https://kcls.bibliocommons.com/item/show/1593040082_beyond_embarrassment

Or the library that you have a card to.  Please ask for the book and then write an honest review after you read it.

Powel’s Books
http://www.powells.com/book/beyond-embarrassment-reclaiming-your-life-with-neurogenic-bladder-bowel-9780996430548/2-0

Barnes and Noble
http://www.barnesandnoble.com/s/beyond+embarrassment?_requestid=672865

Walmart
https://www.walmart.com/ip/Beyond-Embarrassment-Reclaiming-Your-Life-with-Neurogenic-Bladder-and-Bowel/53441858

Good Reads
https://www.goodreads.com/search?q=beyond+Embarrassment

Book Banter
http://www.bookbanter.com/book.php?id=0996430547

Happy reading!

 

10 Tips From the Play Ground that help When Coping with an Embarrassing Disability

I don’t know about you but I grew up in a rough neighborhood.  It was rural Prunedale, California.  Our school and playground got scrappy.  I don’t remember any of my friends asking me how I felt.  We just ran as fast as we could to the wall ball area so we could be first in line to hit the ball against the wall.  There were special acolytes one of us bounced the ball on the roof.  That was ALWAYS the goal.

Now I have the most embarrassing condition one can imagine, a broken bladder and bowel.  Because of my playground days,

I learned these important lessons.

  1. If I fell on the playground and my mouth bled, few noticed unless I screamed loud. This blog is my scream-loud tactic.
  2. Even if kids saw my scabby lip, they didn’t careNow I keep quiet about my medical condition unless someone shows interest.
  3. If a kid tried to push me and I could get away with it, I pushed back. Now think about this folks, writing a book about personal bowel and bladder dysfunction is a set up for a big put down by the prim and proper folks.  This blog and the book are my written push back attempts.  WE CAN TALK ABOUT THIS! 
  4. My friends did not care until I gave them a reason to care. When my friend Adrian and I ran for Sargent-at-Arms, we won because candy helped. This blog and the book I wrote is your gift from me, like the candy, and hopefully your gift to others as well.
  5. To get a friend, you need to be a friend. Friends pass the day very well indeed
  6. Scabbed lips make good school pictures. I am forever grateful that I had a mom who celebrated my imperfections. I grew up to not run away from the painful.
  7. It does not pay to lie, you get caught anyway. I had to decide early on to whom I was writing. Patients are my target audience.  Sometimes I write about things that perhaps the medical profession would not like.  That is ok because I am a single person and this blog is a voice of a patient, not a “paid to sell” or a tactic to sway you a way, I would not go myself.
  8. When I bragged few cared. But if I was real, I was showed empathy. This one needs no explanation.
  9. If a kid is stinky, the bullying satisfaction only lasts a short time. Bullies grow up to have problems of their own.
  10. It made no sense to try to please the popular girl because she was not my friend anyway.  Do you know the most popular nonfiction books are cook books? I hate to cook.  Right now, you are my friends because we are interested in this topic.  I feel fulfilled doing this, popular or not.

What did you learn from the playground?

Pelvic Pain and Bladder Infections

Trudy talks about Pelvic Pain:

Pelvic pain has many causes; endometriosis, menstruation, constipation, for me I am sure mine was caused by bladder infections that cropped up nonstop, because of my underactive bladder.

With all of the drama and head games swirling in my head I, at one time, I lost my identity.  Was I a sexy wife or the worlds biggest looser?  Anyone could get depressed feeling like a failure in the area of marital bliss.

Sometimes living is a choice to move past the pain and just try to engage in intimacy with your partner.  Are we to completely give up a part of life that brings two people together so completely?

I understand that there are all kinds of discomfort rating from one to ten.  I am not talking about the higher number here.  I am talking about the day to day, never forget, always tugging, toothache feel, always nagging, does not cripple, but pelvic pain that does not go away.

I needed encouragement to just try intimacy.  My husband was patient with me is this area and we were successful in not losing a very real part of our marriage.

I will say however that pelvic pain is rough and being honest with your partner is key.

Taken from Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel

By JoAnne Lake with Julia Parker MS, MLIS

Intimacy, Page 54

Bladder infections were the bane of my existence, and I wanted to avoid them at all costs. So much medical advice stressed that people who got frequent bladder infections should urinate after intercourse to flush any bacteria out of the urogenital cavity. Well, what if I had to catheterize myself? How did that help? Would sex make things worse? 

 I was too shy to discuss these issues with my doctor, something that would have ultimately made this transition much easier for me. I did not want to draw attention to my concerns regarding sex and my sexuality. Maybe, on some level, I hoped that, if I did not talk about my personal health issues, even with my husband, I would figure it out on my own, or they would just disappear. Of course, I did not, and they did not, either. So instead, for too long, I lived alone with my fears and questions.

The thought of getting a bladder infection from having sex caused me to shut down. Instead of being pouty because of the rejection, my husband patiently — and I cannot emphasize enough how patiently pressed on. I was so afraid of getting sicker. I wanted to say, “I already gave at the office, so leave me alone.” It was the worst sort of mind game.

Fortunately, my husband and I could trust each other about this, too. Because of his loving nature and openness to my concerns, he helped me to express my fears and be honest about what I needed from him to be comfortable having sex. We discussed issues of hygiene that are so important when dealing with Neurogenic Bladder. We talked about how almost constant pelvic pain made it more difficult to find that sweet spot and how it might take longer to warm up. In addition, I realized that I needed to be careful about overthinking issues. If I allowed fear to control me, I might be alive, but I would not be living.

The Book, Beyond Embarrassment is more than my Memoir

Photo #4I wrote my memoir as I blogged about the topic of neurologenic bladder over several years.  My story is unfortunately common because bladder problems many times go undiagnosed and haunt many.

Imagine my surprise when I discovered that my many symptoms were because of a broken bladder.  I had no idea.  Then imagine my second surprise.  I could find very little about the underactive bladder on the internet. How could a broken part cause so much havoc with my body? Why in the would had I never heard of this before?

Then the greatest event happened.  I got a friend interested in my project. I was no longer alone in my toil.  Julia Parker MS,MLIS, the Biosleuth, and medical research librarian worked her magic, to my many questions.  My story was nothing until we had Julia medically validate what I wrote.  And validate she did. besides that I finally really understood how common this condition is. and how many ways a person could fall prey.

Because of Julia’s input a person reading this book will have an excellent understanding of this condition.

Another person that added so much to this project was the the wonderful urologist, Dr. Lora Plaskon.  She wrote the awesome forward.

From the book, Beyond Embarrassment: 

We hope you have found this book to be a great encouragement and source for better understanding the many health issues that can affect the bladder. An editor in the publishing industry once explained to me that every book has potential value and insight, since no two authors who write on the same subject will ever duplicate each other. It’s just not going to happen.

Knowledge Nugget:

Of course, you may wish to consult with a medical librarian to get started on your search for health information. Hospitals and their medical libraries were originally maintained exclusively for the use of their physicians and staff. Now, many community hospitals include a Consumer Library, which is open to the public, with its specialized medical information that you won’t find in most city or county public libraries. If you are fortunate to live near a university with a medical school, you should check with them to see if they are open to the public for reference services.

A Flacid Bladder Question for Trudy

Question for Trudy:

Hi! First I want to say thanks for being brave and speaking out about this problem.

I have small, flaccid neurogenic bladder. My question is should I wear diapers? I do wear menstrual pads, but sometimes they are not strong enough to keep the fluid in, so I must change them from time to time. I do not have incontinence, but I cannot pee right, it always stays in my bladder, so I relieve myself in the pad. I cannot live in lady room, right? (Sometimes it feels like I should.)

How do you step out of your comfort zone?  Going out is really a problem for me. I am always afraid I will leak in public as I have small bladder I cannot hold too much, my urgency is at 180 ml. My max. is 200 ml. I am a 26 year old women. I been having problems since I was 10 years old. I did not have any medications for it, nor catheter. I do not know why, I am also afraid it will get worse since I did not have any treatment. Tina

Trudy’s Answer:

Hi Tina,

Thank you for your question.

I step out of my comfort zone because I want to live my life.  I get into trouble now and then, I admit, but at this point in my life I am not ready to stay housebound and you shouldn’t either.

You say you do not have an urologist that you are working with? Finding a good urologist is key.  You need to see a doctor because your health depends on it.  Perhaps he or she could answer some of your very important questions.   Please write me back and tell me that you will do this.

There are several organizations that can help you. To find a urologist and perhaps help with product choices.

I use an intermittent catheter.  I do not leak, but many do, so finding help, for the products you need,  is what you need to do. For years my attitude was exactly like yours.  I thought that this was what I was chosen to live with and I needed to just live with it.  What I did not understand is that I was not doing my body a favor by ignoring symptoms of an underactive bladder.  There are other body parts you can hurt by trying to be stoic.

Here are some contacts you can make: A quote from Beyond Embarrassment, JoAnne Lake with Julia Parker

Page 219

Society of Urologic Nurses SUNA Headquarters East Holy Ave. Box 56 Pitman, NJ 08071-0056

Underactive Bladder Foundation, PO Box 5080 6360 Broad Street Pittsburgh, PA 15206-9998

Start with the above contacts.  There are many more in the book.  I do not know where you live but if you have a teaching hospital nearby perhaps that would be a good place to start as well.

Here is another idea to help you find the products you need.

Quotes from Beyond Embarrassment, JoAnne Lake with Julia Parker

Page 76

Incontinence Pads and Diapers One of the most obvious issues people with Neurogenic Bladder deal with — and unfortunately, one of the greatest sources of frustration — is finding the best bowel- and bladder-accident protection for their needs. No two people are exactly alike, so we can’t use one-size-fits-all devices and aids. What’s best for leakage will not work for a full-on flood. So for “the rest of the story,” I interviewed Scott Beckert, RN, an expert in the field of incontinence products, having worked with patients living with all types of urinary incontinence. He explained that, by default, many of us go to the grocery store and buy an adult brand of protection from stocking clerks who have no idea what we need. They sell us their own brand suited to a woman who dribbles, not a full drencher. The diapers in the store may be geared to light incontinence. What if a person needs help for overnight incontinence? Then a person should use a product that can contain the amount of urine that is expelled overnight. Buying an inferior product can cause frustration and perhaps disaster. The search for the perfect adult diaper or pad is daunting because there are so many products available and so many factors to consider. It is important to be well informed of your options. Scott recommends that first we look for gender-appropriate supplies. Men and women are different, and it matters. How and where the urine enters the product makes a difference in how efficiently it is absorbed.

 Then further down, on page 78 is:

I have found that talking to an online salesperson about my needs is most helpful. He or she is an expert in the field, and there is the added bonus of much-needed privacy. Make sure that the product you order online or over the phone includes discreet packaging. No need for your neighbors or the mailman to know your business.

 I hope this helps you.  Please keep in touch.

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