Circle of Friends

For many years now, I have had been given a great opportunity to meet so many amazing people from all over the world, not in spite of, but because I was born with a rare birth defect called bladder exstrophy.  My life has had numerous blessings because of it, and on the whole the blessings have gratefully outweighed all the negatives I have had to personally endure.

Bladder exstrophy is a malformation of the bladder, in which the bladder and related structures are turned inside out. The skin of the lower abdominal wall that normally covers the bladder also does not form properly and is separated, thus exposing the inside of the bladder to the external world. If you imagine a balloon that has been split and opened up so that the inside of the balloon is visible, you will have a picture of what has happened  –  Source: www.bladderexstrophy.com

I have a stoma.

Over the years, I have also become a great support of medical camp programs, or parents’ conferences or programs like Breakaway in the United Kingdom.  http://www.breakawayfoundation.org.uk/

I can see how far people with stomas have come, around the world, since I had my stoma surgery at the age of 4 in 1969, the products we all use have come lights years and I not just talking about with pouching systems, but across the medical industry.  However the biggest change over the years has been the ease of communications and travel to connect with others going through similar medical issues, this is the biggest and best change, because now no one has an excuse to ask, “am I alone?”

To contact Thomas Exler you can do so at texler@courage-to-shine.org or to know more about any of the groups below please go to their respective website.

Aeroflow Healthcare ensures quality care from the first breath of life to the last; we will be there every step of the way. We are committed to following our mission to improve each of our patient’s quality of life through compassion, excellent service, and exceptional products. We feel that it is our duty, responsibility, and privilege to help each patient regain their freedom and live a better life.

Dear Trudy,

I am enclosing the material we discussed. I am an eighteen year prostate cancer survivor. In step with your blog “TrudyTriumph.com” I wrote the limericks over a period of several years post-surgery and radiation treatment. I did not observe humor in the hospital nor my urologist’s office, so I made an effort to give some laughter from my perspective to my doctors and their staff. I would recite a limerick to them about their treatment, exams, and their side effects of their efforts. I figured it was better to laugh that cry.

Some of these are pretty raw and exaggerated, which is the nature of limericks. They are pretty chronological in order and recorded for copy-right protection.

Please enjoy and smile,

Jim Yount

 

UROLOGY RADIO ONCOLOGY

 

SANDRA, SHARON, AND DEBBIE TOO

WITH MARKERS RED, WHITE, AND BLUE

DREW A MAP ON MY BUTT,

SO THEIR PHOTONS COULD FIND THEIR WAY THROUGH

 

IN A ROOM WITH A NICE COOL BREEZE

AND MY PANTS PULLED DOWN TO MY KNEES

MARY JO SAYS LIE STILL

I SAY THAT I WILL

BUT WHAT SHOULD I DO IF I SNEEZE?

 

DEBBIE, JANET AND THE BENCH WARMER, AND OLIVIA

TALK TO ME ABOUT TRIVIA

THEY SAY WITH A BOIG SMILE

HANG AROUND HERE A WHILE

WE’LL ZAP YOUR C-A TO OBLIVIA

 

TOM I’VE ONLY ONE WEEK TO GO

ALTHOUGH TIME GOES BY PRETTY SLOW

TO GET RID OF THIS ROT

I THANK YOU A LOT

YOU’VE LENGTHENED MY LIFETIME I KNOW

 

I’M FEELING MUCH BETTER THESE DAYS

THANKS TO YOUR CARING PROFESSIONAL WAYS

AND TO YOUR FINE STAFF

ALWAYS QUICK WITH A LAUGH

I THINK YOU SHOULD GIVE THEM A RAISE!

 

THERE WAS AN OLD MAN FROM TEMPE

WHO WAS FILLED WITH JOY AND GLEE

WHILE HE WAS TRANQUILLY DREAMING

HIS DOCTOR WAS REAMING

SO NOW HE CAN ONCE AGAIN PEE

 

I CALLED UP MY DOCTOR TODAY

ABOUT THE RESULTS OF MY LAST P S A

HERE’S WHAT HE SAID

“JIM YOU ARE NOT DEAD”

OH BOY, DO I LIKE IT THAT WAY

 

THERE WAS A MAN FORM PAH RUMP

WHO WAS LEFT WITH A NAUGHT BUT A STUMP

WITH HIS DOCTORS PRESCRIPTION

AND NURSE KAREN’S DESCRIPTION

HE PUMPED UP HIS TRUMP FOR A HUMP

 

IN A DOCTORS OFFICE IN WHICH I TAKE STOCK

NURSE KAREN WORKS FOR MY UROLOGIST DOC

SHE HELD ONTO ME

WHILE MY DOC HELPED ME PEE

BY SHOVING A STICK UP MY COC

 

WHEN I COULD NO LONGER PEE PAST MY TOES

MY DOC PUSHED A TUBE UP MY HOSE

I KNOW NOT HES INTENT

BUT I KNEW WHERE IT WENT

ITS TIP CAME OUT THROUGH MY NOSE

 

January 2010

 

THERE WAS AN OLD MAN FOR LAKE PLACID

WHOSE DEMEANOR WAS INCREASINGLY ACID

SINCE HIS SURGERY WENT ASCEW

HE COULD NO LONGER SCREW

BECAUSE HIS ORGAN WAS FLACID

 

THERE ONCE WAS A WOMAN NAMED ALICE

HOW GAVE HER HUSBAND CIALIA

IF SHE ONLY KNEW

SHE’D TURN BLACK AND BLUE

FROM THE BANGING SHE GOT FROM HIS PHALLUS

 

FOR A BIOPSY OF MY PROSTHETIC MASS

TRANQUILIZED, THE DAY QUICKLY DID PASS

ALL I REMEMBER OF THAT DAY IN DECEMBER

IS SOMEONE’S COLD HANDS ON MY ASS

 

LITTLE WILLIE WAS ONCE A GO-GETTER

BUT LATELY HAS BEEN LIMPER, SORER, AND WETTER

THIS STUFF THAT I HAVE

CALLED DR. NAIR’S SALVE

HAS MADE LITTLE WILLY MUCH BETTER

 

I KNOW A UROLOGIST NAMED INGER

WITH WHOM I WISH NOT TO LINGER

BUT HE’S AS GOOD AS THEY COME

FOR A GUY WITH NO THUMB

WHO CAN PRACTICE WITH ONLY ONE FINGER

 

AND I KNOW WHERE IT GOES!

 

JULY 2011

 

MY DOC SENT ME TO ONE OF HIS CRONIES

WHOSE TREATMENTS ALL TURNED OUT TO BE PHONIES

HE SENT IN A YOUNG LASS

FOR A SHOT IN MY ASS

WHICH MANAGED TO SHRIVEL UP MY COJONIES

 

THERE WAS ONCE A UROLOGIST NAMED KELLY

WHO GAVE ME A SHOT IN THE BELLY

“IN MIRACULOUS WAYS

IT WOKS IN SEVEN DAYS”

SURE ENOUGH, IT TURNED MY WEE WEE INTO JELLY

 

ROLF PANKE IS MY HARD WORKING DOC

HE TREATS PATIENTS ALL ‘ROUND THE CLOCK

AS CHRISTMAS DRAWS NEAR

DOCTOR ROLF, NEVER FEAR

SANTA ILL FILL UP YOUR SOC

 

 

 My bladder doesn’t squeeze on it’s own, causing urinary retention and related problems. I live with an all too frequent feeling of urgency that’s completely out of line with the amount of urine I actually output, leading me to spend way too much time in the bathroom! Equally frustrating, I never feel “done” when I urinate; I simply make an executive decision that enough is enough.

My urinary issues stem from either dystonia, the neurological movement disorder I’ve lived with for 40+ years, or my dystonia meds- my neurologist and urologist have yet to solve that mystery! I’ve tried oral therapies including Flomax to no benefit. Frustrated with yet another “incurable” problem, I hopped off the bandwagon and stopped seeing my urologist. Surely, I owe him a visit, even another ineffective med is better than doing nothing.

Speaking from experience, what I will say is that people need to be vigilant about their bodies and inform themselves before beginning any medical therapy. Sometimes, side effects are unavoidable, presenting a most unappealing cost-benefit analysis. I’ve tried going down on my dystonia meds to see if my urinary issues would improve but no such luck, all that happened is that my dystonia worsened. But it was worth a try.

You’ve created a wonderful forum where people can share highly personal issues. Reading these stories provides comfort and sharing our daily struggles with chronic illness can prove invaluable.

For those interested in learning more about dystonia, they can visit my blog, Chronicles Of A Dystonia Muse: www.dystoniamuse.com.

I wish you all the best.

Pamela

Dear Trudy

In 1994, Todd Brown was injured in a motocross accident that left him paralyzed from the chest down. In an instant, his whole world changed forever. Once he left the rehabilitation facility and transitioned back to living at home, Todd faced all kinds of new challenges and problems he’d never encountered before. Adjusting to the reality of life in a wheelchair was difficult. On top of that, he had difficulty finding a good medical supplies company that offered great service and understanding for people who were in situations like his own. A few years later, he created a company with the purpose of providing the best customer service and top-quality products that could help to improve others’ quality of life.

Since Todd has first-hand experience with understanding the financial challenges and burdens that those with specific medical conditions can face, he wanted to give young adults with these issues a chance to achieve their dreams, just like he has done in creating his own company.

Today, 180 Medical is proud to be able to offer an annual scholarship program that helps young adults get a quality education and move closer to their goals in life, despite their medical or financial hardships.

Scholarship Award

Eligibility Requirements

To be eligible, applicants must be U.S. citizens who will be attending school in the U.S. full-time in the fall for their associate, undergraduate, or graduate degree. All applicants must be under a doctor’s care for spina bifida, a spinal cord injury, transverse myelitis, a condition causing neurogenic bladder, or an ostomy (ileostomy, urostomy, or colostomy).

Application Deadline

The 180 Medical Scholarship Program runs from January 1 – June 1. All materials must be postmarked by June 1st. All of the application information can be found on our scholarship website: www.180medical.com/scholarships.

Thank you for sharing this scholarship with your followers. Together, we may be able to make a difference in someone’s life!

Sincerely,

Kieranne Nelms

Dear Trudy,

My name is Enid. I am 50 years old, and I live in Puerto Rico. At the age of 24 I was diagnosed with invasive cervical cancer. Consequently, I had to undergo a radical hysterectomy and radiation therapy. Approximately 6 years ago I was diagnosed with neurogenic bladder as a result of the surgery and radiation . . . 20 years later! Regardless of how cautious I am when I self-cath, bacteria which have “colonized” my bladder reemerge. Now every 3-4 weeks (no exaggeration) I have to take intravenous antibiotics for 14 days since the ESBL E. coli bacteria has become resistant to all oral antibiotics. My doctors fear that eventually the bacteria will also become resistant to the IV antibiotics, but that there’s nothing else that they can do. They’ve suggested that I visit doctors in the U.S. but due to financial reasons and my job, this is not possible. Has anyone had a similar experience? Suggestions please. Thank you.

Question:
. . . since I have recurrent (monthly!) and aggressive (ESBL) UTIs which have become resistant to ALL oral antibiotics I am forced to have my meds administered intravenously. I’ve been to several doctors and they all say it is due to my neurogenic bladder and the constant use of catheters. Like you, I am super careful and sterile when I self-cath, so this response drives me crazy. Please help . . . I’m running out of options. Thank you.

 

Dear Enid,

For some reason, no matter how careful I have been, I have developed a colony of bacteria in my bladder as well. Despite trying multiple courses of oral antibiotics I was dealing with constant bladder infections. My urologist suggested a compounded liquid antibiotic put directly into my bladder. So far it has helped me and as long as I take it I am bladder infection free. A couple of times I have not inserted it and my urine has become cloudy. I would like to report that it is a total cure, but for me it is not. It simply controls the bacteria that have colonized the lower portion of my urinary tract.

To insert it I use a catheter with a cone shaped end, and after I empty my bladder I use the syringe to place the lifesaving liquid directly into my now empty bladder. The compound I use needs to be refrigerated, with a shelf life of about a month.

Since this is a drug, it needs to be prescribed by a doctor; I do not want to say exactly what I use in the blog, because what works for me might not work for you.

Enid, I hope this helps you. I will remember you in my prayers.

Fondly,

Trudy

Dear Trudy,

I am 33 years old and I gave birth to a healthy baby girl on 20th July 2012. My life has changed totally after that day and I mean it in ways which majority of parents would not understand.

I gave had a vacuum assisted vaginal birth with epidural. It was not a difficult birth and everything went smoothly until a week I was discharged from hospital. I realized that I did not feel any fullness in my bladder and could not move my bowels either. Anytime when I went to the restroom, urine will start to flow and I had a lack of sensation and could not control my bladder. I had to manually clear my bowels and it was a horrifying process. I called my gynecologist immediately but was told that it was normal. So I carried on this for a month more.

I was referred to a urologist for my bladder problems and she said that I could be suffering from UTI but results showed that it was negative. So I was put on some antibiotics for the next few days. The side effect of the antibiotic was diarrhea and it was then I realized my control over my bowels was also lacking greatly. I soiled myself without knowing and I felt a great sense of despair. I checked myself into hospital and I did an MRI scan and X-Ray as doctors suspect that I may have the Cauda Equina Syndrome from the epidural injection area. The results were negative and I was sent home with a diagnosis of neurogenic bowel and bladder.

Since then, I have tried all sorts of alternative medicines and acupuncture. I have also tried the interstim therapy where a needle is inserted into my ankle for 12 sessions. It probably did not work for me and my doctor suggests neuromodulaton to implant a device into my body. I am hoping not to do anything too invasive and I am still looking and hoping for a miracle. I find great joy in caring for my daughter and I am involved in various sports activities with my dogs as it keeps my mind off my condition. I have to wake up extra early to clear my bowels and bladder and take note of the nearest restrooms wherever I go. I have avoided travelling too far as I am afraid to have accidents.

I thank Trudy for giving me the opportunity to share about myself to the rest of you who may be looking for answers like I am. Teresa

Dear Trudy,

Thank you for writing this blog. As a fellow blogger writing about a taboo subject, I really appreciate the bravery it takes to post on such a sensitive topic.

I write here as an ally; I’ve never had bladder or bowel problems. That said, I accepted Trudy’s invitation to join this Circle of Friends because I suffer from pelvic pain, as do many of you. I think it is important for patients with taboo problems to speak up and spread awareness about their issues, in the hopes of creating better treatment options for themselves and others. I also wanted to write because many people have overlapping conditions, so some of you may benefit from what I have to say, and some of my readers may benefit from your experience.

I started to have vulvar pain in April of 2004, over ten years ago. I went to a string of gynecologists. They told me nothing was wrong, that maybe it was a yeast infection, that it could be because “your generation wears thong underwear,” and one woman told me I was wasting her time and that she had to go see patients with real problems (!)

When the hospital that particular gynecologist worked for sent me a form asking me about my experience, I wrote a lengthy letter complaining about her poor treatment of me. By then, I had received a diagnosis, of sorts – vulvodynia. Vulvodynia is simply “vulvar pain with no known cause;” receiving this diagnosis did not tell me anything new. It only echoed my knowledge that something was wrong.

Over the past ten years I have gone through a lot of ups and downs, tried treatments that didn’t work, and finally found some that did. I have learned that my health starts with me. I am the captain of my team, and the only care providers worth having are those that work in partnership with me and each other.

Lastly, I have learned how important it is to have peers, people who are going through similar experiences. By making connections with each other, we form a louder voice, one that can make bigger changes.

Won’t you join me? Check out my blog at YatraYoni.com.

Dear Trudy,

Before describing the effects of Cushing syndrome on the bladder and bowels, I feel it only fair to give a “Readers Digest” definition of the condition.

Cushing Syndrome is a disease caused by an abnormally high presence of cortisol in the body. Cortisol is a steroid produced by the adrenal glands. Unfortunately, excess cortisol (hypercortisolism) lends to a myriad of unpleasant symptoms; the most popular being drastic weight gain, especially in the mid-section, while maintaining thin arms and legs.

Other symptoms may include but are not limited to excessive body hair (hirsutism), buffalo hump, moon-shaped face, purple stretch marks (striae), fragile skin that bruises easily, acne, slow healing, missing periods (ammenorrhia), high blood pressure, depression, diabetes, osteoporosis, fatigue and muscle weakness.

Cushing patients are often misdiagnosed, and can wait years for their diagnosis due to the overlapping of the symptoms with other diseases. Dr. Harvey Cushing was the first to discover Cushing Disease in a 1912 study; so us, “cushies” use his birthday as a time to spread awareness about this disease because it’s not a very well-known illness.

As you can see from the symptoms above, Cushing syndrome affects the body in many different ways. The adrenal glands are responsible for the production of cortisol and incidentally sit right atop the kidneys as can be seen by the picture below (courtesy of Wikipedia “polyuria”).

An overproduction of cortisol can cause high blood sugar and often diabetes. Anyone that has known someone with diabetes or had diabetes, knows that excessive thirst and urination that comes along with it.

Most Cushing patients will tell you they wake up multiple times during the night to void and tend to have a tremendous output of urine. Also, people with Cushing may do something called “cycling.” This means that their cortisol will be tremendously high at some points and tremendously low at others. Low cortisol can cause diarrhea, nausea and tremendous stomach upset.

My experience was slightly different. I had tumors on one adrenal gland that were causing the excess cortisol; however, I also had tumors on the other adrenal gland causing excess aldosterone. Aldosterone is another steroid produced by the adrenal glands that directly affects the breakdown and absorption of salt in the body.

You would be surprised by just how important this is. Not only does hyperaldosterone cause extremely high blood pressure, but it creates something called salt-wasting. The excessive urination is so intense that potassium and salt just come right out in the urine. Low potassium is called hypokalemia and can be extremely dangerous if not treated.

Now, I mentioned that people with Cushing tend to wait a long time for a diagnosis. I became sick at the age of 19. I doubled in weight in less than a year and my blood pressure was running easily 200/95 most days. Yet my doctor continued to feed me blood pressure medication until the age of 23.

He finally figured that maybe I wasn’t just being lazy, overeating or just depressed. He sent me to a nephrologist to scan my kidneys and see if the arteries were narrowed and causing my high blood pressure. Thank goodness he finally did!

The nephrologist saw something called an abdominal aortic aneurysm (AAA) in the scan and had me immediately admitted to the hospital. An AAA is no joke. It is basically when the aorta is under such immense pressure for such a long time that it sort of splits and balloons out. Therefore, allowing the blood to channel through two openings. The ballooning of the outer wall or second opening is weak. In the elderly it is much more weak and subject to bursting. I should have been dead. My youth is what saved me.

The hospital that discovered my AAA was not equipped to deal with such a matter, so they transferred me to the city hospital. The first course of treatment was to assess the damage and lower my blood pressure. An endocrinologist walked in and took one look at me and was able to surmise I had Cushing. He was right. I was a textbook example of someone with Cushing.

Within the year I had my right adrenal gland fully removed and my left mostly removed. They left behind a piece of the left hoping it may someday be able to function again on its own. The withdrawal I went through from steroids after surgery was intense.

When a person has adrenal glands removed he or she may become dependent on steroids for life. Without those steroids the person can go into a state of adrenal insufficiency or AI. AI is a serious matter, which amongst other more serious symptoms may be diarrhea, nausea and vomiting. I was lucky because when my surgeons saved my partial adrenal, it eventually, continued to make aldosterone. That meant I only needed to replace cortisol putting me at less risk for AI.

As you remember, I had been diagnosed with an AAA prior to the adrenalectomies. Unfortunately, it had grown to a point at which it needed to be repaired. I went in for surgical grafting of my aorta in November of 2006. If anything could go wrong it did. I had infections, was in and out of surgery, but most importantly for our purpose here; suffered a spinal cord infarction.

Something like that had always been a risk of the surgery, but I never thought it would happen to me. I remember feeling very tired and unable to get out of my hospital bed. Then…I woke up and was unable to feel my legs. I was paralyzed from the waist down. They told me that the fluid in my spine had been temporarily blocked. That I may never walk again. Not only did I have this gaping hole in my side where they were still continuing to operate every other day to debreed the wound and try to rid me of infection, but now I was paralyzed?

I was extremely lucky in the sense that I gradually regained feeling in my legs. When I say gradually, it was extremely slow and painful. I also began physical therapy. During that time I had a catheter in and my bowels had become impacted. The impaction was horrible. I had a very nasty and not well meaning nurse manually remove the impaction. It was both humiliating and painful. I will never forget her long finger nails…

Turns out that this would become common-place. My bowels were flaccid. So they started giving me so many stool softeners I learned quickly that I had no control over my bowels. I was constantly having accidents and started wearing diapers. Next they removed my catheter. I had to pee so badly and I just couldn’t. I didn’t understand. I had no idea this could happen. I remember sitting on the toilet in my room running my hand under warm water from the sink just praying I would pee. Nothing happened.

The nurses would come in and straight cath me. Unfortunately, I have always had a large urine output, with or without Cushing. So the 4-6 hours they thought was normal would set me into a state of agony. My bladder was so full and I was in so much pain pleading with them to cath me.

Their responses: “You can’t need to be cathed again.”

Finally a kidney doctor came in and said there was nothing wrong, I just had a larger volume than most and that they should restrict my fluid intake. I had my water held ransom and because of the paralysis couldn’t get up to get any. The result was that I was still putting out an abnormal amount of urine and I became dehydrated. They returned my water.

The hardest part in all this was that I had to learn how to catheterize myself. The therapist tried to help me. She gave me a mirror and told me to lay in bed and do it with a self-contained kit. Ummm, I am over 300 lbs, I haven’t seen my urethra since I was 19, are you kidding me?

I would just stab at myself upset and blind because I had to pee so bad. Not to mention, I couldn’t help think, how would I ever do anything in the real world if I constantly had to do this? Then I would have to beg the nurses to do it for me. Forget sleep. This would happen every couple of hours because I had to go so often.

I was so lucky because I met this wonderful woman with MS in therapy that said she had been cathing for years. She was a little bit on the heavier side, but not as big as me, and said she used these little 14French sticks and emptied her bladder right into the toilet. She described to me how she did it and it only took a small while before I was able to do it too! I am forever thankful to her for teaching me what the therapists and doctors could not.

So now I want to skip ahead to a couple of years later. I have got onto a bowel plan that isn’t perfect but my cathing frequency is becoming an issue. I was cathing upwards of 30 times a day! I couldn’t take a half hour car ride without being so uncomfortable I wanted to cry. Not to mention the infections… I always had one.

I decided to see a local urologist. I told her all of my symptoms and what I had been through and she didn’t even have to physically examine me. She gave me a bunch of pamphlets and a video and explained interstim implants and sacral stimulation. She said it would get my frequency under control and there was a good chance I would pee again.

Six surgeries later… Yes , I said SIX, and $3,000 later, the implants had not helped at all and they were burning under the skin. I won’t get into the details of why I had so many surgeries, but let’s just say she sold me on the false hope she gave, because I was so desperate. She had even gone as far as to let me believe the implants would improve my bowel function. I felt betrayed.

I had also gained back the 100 lbs I had lost prior to their insertion due to all the depression and recuperation from the surgeries. I had to start going to pain management because the weight was causing too much stress on my surgical sites in my ribs and abdomen.

Let’s fast forward again, to about two more years later and about two and a half years ago from now. I decided to see a urologist in the city. He was very nice and said we needed to do something called a urodynamic study so he could assess the extent of my bladder function.

He was extremely honest and blunt in his assessment. He said that the interstim implants could have never helped me. I was both devastated and relieved by his honesty. He basically explained that the nerve damage caused from my spinal infarction was causing my nerves to work overtime trying to work making spasms in my bladder. He further explained that the damage was too severe for me to ever push out urine on my own again. The best course of action was for me to try and control the frequency of my urination with medication. I tried so many medications and still only got down to cathing around 20 times a day. He also said that he would remove the implants for me whenever I wanted.

Not much time had passed and I was constantly online looking for any sort of new procedure that might help me at all. It had escalated to the point that I began leaking if I didn’t make it to a bathroom in time.

Finally, I came across and article on botox. I called my urologist immediately and asked him if I was a candidate. He said I was, and scheduled me. I had the botox injection treatments and interstim implants removed at the same time.

Here I am two and half years later. I just had my fifth set of botox injections and I am so much more content. I am only cathing an average of ten to fifteen times a day. I don’t leak anymore either. It’s still not perfect or ideal, but so much better than before. My bladder isn’t running my life. I get the series of shots about every six months in the hospital under twilight. Some patients have it done right in his office without any sedation, but I am not interested in finding out what twenty or thirty some-odd shots to my bladder feel like without being sedated. I will say that I am always on the lookout for the next best advancement.

I wanted to share my story with all of you. No one should have to endure all of this unnecessary pain, embarrassment, humiliation and just plain danger. Had I known anything about Cushing prior to my diagnosis, there is a very good chance so much of this could have been avoided.

Think of this as a cautionary tale. I cannot emphasize how important it is to educate yourself. If I have taken anything away from my experience, that would be it. It’s ok to question things. Doctors are people just like us. Some are good, some are not so good. During the month of April and Cushing awareness please remember people like me. We have so much knowledge at our fingertips with the internet…please use it. It could be life-saving and life-changing all at once.

Hi Ms. Trudy,

After 2+ years I am finally close to a diagnosis/cause of my neurogenic bladder. In March, I began experiencing numbness and tingling down my right leg plus a deep groin pain. I also had an obvious leg length discrepancy that I was not born with. These symptoms were new and in addition to my already diagnosed neurogenic bladder.

My story is very long as I have been to many doctors, most of whom told me they have never seen anything like this. I have also seen many doctors that told me they could not help me and wished me luck.

Through all of this, I’ve learned many very important lessons when navigating the medical world:
(1) always trust your instinct because you know your body best;
(2) never let the doctor convince you that you are imagining things, being overly dramatic, or aren’t feeling what you know you are feeling;
(3) always get a copy of your records, especially test results/reports;
(4) be your #1 advocate and do your research;
(5) always get multiple opinions; and
(6) never give up!

As I mentioned, my story is very long and has many twists and turns so I’ll fast forward to the future and get to the diagnosis. I’ve been diagnosed with a very rare arachnoid or Tarlov cyst that is sitting on my spinal cord at the S3, the part of the sacrum responsible for the parasympathetic nerves that control the bladder.

The cyst is approximately 3 inches long spanning from the S2 to the S4. I say it is either arachnoid or Tarlov’s because I have two different opinions from two different radiologists as to what type of cyst it is. I am still in the process of seeing specialists to determine the exact type. These types of cysts cause a wide variety of problems from bladder issues to radicular pain and can cause permanent nerve damage if not surgically excised.

The only reason this cyst was finally discovered was because an Orthopaedic Surgeon (OS) that I went to asking about my leg length discrepancy and groin pain (I thought they were related symptoms) ordered me a neurogram (at my request) which is a type of MRI and a nerve conduction study. To get the nerve conduction study, I went back to my regular neurologist. The study was performed and indicated radicular nerve pain on the lower right side (down my leg) of my body.

Now that I had nerve pain, my neurologist was more interested in my case than he was when I first came to his office only presenting with neurogenic bladder. Now that I had his attention, I explained all of my symptoms and showed the doctor the difference in my legs. After hearing my story, he ordered an MRI of my sacrum as he thought “something might be hiding in my sacrum.” Sure enough something was: the cyst!

To make matters worse and more interesting, the cyst did not explain the leg length discrepancy or the deep groin pain. I had been to several OS and a Physiatrist about these symptoms; all of them said nothing was wrong with me despite the fact that they measured my legs and could tell they were unequal (there’s about a 1.5 inch difference between the right and left leg), they could see my right leg turning inward and I had an MRI of my pelvis (the neurogram the first OS ordered) that indicated something could be wrong with my hip (the radiologist couldn’t say for sure what/if something was wrong because the MRI was designated for the pelvis/nerves and not the hip).

Thank God for my neurologist because he was the only doctor that would listen to me about the groin pain and leg length discrepancy and the only doctor that ordered me an MRI to look specifically at my right hip. In addition to the cyst, the MRI revealed that I have Grade III chondromalacia and a labral tear in the right hip joint. This diagnosis explained the groin pain I was having and the leg length discrepancy.

So where am I now? Well, I am looking at two surgeries, one to repair my hip (I may need a total hip replacement -still seeing OS to determine what to do) and the other to remove the cyst. Luckily the hip issue is common so it is an easy fix. The cyst on the other hand has proven more difficult and has taken me to a whole new realm of the medical world -what I like to call the Super Specialty Specialist realm.

This is the realm of doctors who are so specialized that they: (1) usually don’t take insurance and (2) will only see you if they are “interested” in your case. I say “interested” because that is what my neurologist always says. He says that with rare diseases, you have to find a doctor that is “interested” in both your disease and in helping you specifically.

So that is where I am at right now: trying to find a doctor who is interested and who is willing to help me. My neuro did refer me to a Super Specialized neurologist at Johns Hopkins, Dr. Robert Gerwin, who is supposed to help with coordinating my care for both the hip and the cyst. I need a coordinator because the doctors have to be sure what symptoms are caused by my hip and what are caused by the cyst. I believe this is to justify the spine surgery because the spine surgery is risky due to nerve roots that may be tethered or entangled with the cyst.

I’ve called Gerwin’s office and like the rookie I am in navigating the Super Specialized Specialist realm, tried to make an appointment to see him. I was told that he would not consider seeing me until I sent him all of medical records and test results. I’ve sent my records to his office and am now crossing my fingers that he will be “interested” in my case and willing to help me. He is just the first step though. I still have to find a neurosurgeon that will be “interested” and willing to help me.

So that’s the short version of my story. I wanted to send you an update because I hope that my story can help someone else. I also wanted to share because many doctors tried to make me feel like everything was in my head. I was also turned away by many doctors.

Having an issue like neurogenic bowel or bladder is frustrating enough without having doctors that either won’t help you because they aren’t interested in your case or dismiss you as delusional or whiny because they can’t solve your problem in fifteen minutes.

Hopefully my story can help motivate those that may be struggling to keep pushing for a diagnosis or help someone who may have neurogenic bladder/bowel know that there are other diagnosis out there besides MS (I heard on more than one occasion that I either had MS or nothing was really wrong with me).

I appreciate you taking the time to listen to my story and help those of us suffering with this often irritating disability. The community you foster through your blog is very helpful especially when it feels like nobody else on this earth understands what you’re going through.

Keep on keepin’ on
Many Thanks!!

This sent sometime later… We are so happy for Jennifer.

I have been recovering from major surgery related to my neurogenic bladder condition: meningeal diverticula cyst. Please note, the condition on record may have been Tarlov Cyst but this was changed to meningeal diverticula in the last couple of months by my neurosurgeon.

Hi Trudy,

I found your blog yesterday after finding your profile on “patients like me” which I’ve recently joined, and I’ve just read the whole thing from end to end. As I have neurogenic bladder and bowel myself, it all resonated very strongly for me so I thought I would drop you a line.

I was diagnosed with neurogenic bladder last September, after becoming suddenly very incontinent about a year ago. In the space of a week, for no known reason, I went from totally normal to complete loss of bladder control at the beginning of April 2012 and it was absolutely devastating and humiliating.

I live in the UK so my healthcare setup is a little different to yours and while I don’t have to pay anything, it is MUCH slower, so it was four months before I was able to see a specialist who told me that as well as the incontinence I also had significant retention.

Urodynamic testing showed that my bladder wasn’t contracting at all but as it fills and the pressure increases, the sphincter will spontaneously loosen and release just enough to lower the pressure, and this was happening about once an hour, up to a cupful at a time. The rest was just sitting there in my bladder going stale and I had two UTIs in six months as a result, so I was put onto catheters at the end of September.

Like you, my “training” was short and limited, although I did get given a DVD and a free mirror. (At this point I need to let you into my little “secret” – I’m a pre-op transsexual man which means that while I look, think and feel like a man, I was born female and I haven’t yet had any genital surgery so I still have female “plumbing.” I had to laugh at your blog entry about needing three hands to do it with the mirror, and I very quickly learned with practise to do it without needing to look.

I started with four times a day but that wasn’t enough to keep the pressure in my bladder low enough to prevent further incontinence, so last month my doctor recommended I go up to six times a day and that is much better for me.

Unlike you, I have no internal sensation in my bladder at all and I don’t even feel pressure or pain when it’s full, so I go strictly by the clock, once every three hours. I still get occasional leaks though, especially after a couple of pints in the pub (I’ve learned to take extra catheters with me when I do that. One extra catheter per pint of beer seems to work!).

Bowel issues started also around August; I noticed that I was pooping much less often than normal and when I did need to go I wouldn’t be aware of it until too late, sometimes with the predictable consequences if I wasn’t close enough to a toilet. I usually get around 15-20 minutes warning, which is enough most of the time but not always. I generally “go” about once every 5-6 days, and on days that I do go, I tend to go twice. Oddly, I’m never constipated and I don’t need a stool softener.

As well as the bladder and bowel problems I have other symptoms too, that made me think “MS”. For several years I’ve had issues on-and-off with extreme muscle fatigue in my legs, and pins-and-needles in my hands and feet, sometimes to the extent that I need a cane when I go out. I never mentioned this to my doctor before (I’d be laughed at and thrown out if I went to my GP with pins-and-needles) but I mentioned it to my urologist who said that my problems are clearly neurological in origin, so I was sent for an MRI scan in October.

That came back all-clear, so I have no spinal or brain tumors, no damaged discs and no sign they could see of MS which was something of a relief. Though I understand that sometimes MS doesn’t show on an MRI scan even when present so I suppose it still might be that.

Now it appears that I’ve been “written off” by the urologist – I’ve had all the tests that are available to me on the NHS and they’ve basically said “we don’t know the cause and we’re not going to pursue it any further unless there is a serious deterioration in your symptoms” so now I’m under the care of my local Continence Service which helps me manage my condition by diet and routine. They normally also recommend Kegel exercises but in my case I can’t do that at all; my pelvic floor muscles are completely paralyzed.

Your blog has also inspired me to try managing my condition by alternative therapy too and I am definitely going to start a regime of B-12 and cranberry supplements. I can’t get D-mannose here locally, and I can only get fresh cranberries in December (they’re imported for Christmas and they’re horrendously expensive) but I can get cranberry juice, dried fruit and pills.

I had a third UTI in January and I’m anxious to avoid any more; because I can’t feel anything in there I can’t tell when I have one except that my pee goes very cloudy. I had the beginnings of another, I think, about 2 weeks ago but a week of intensive cranberry-juice-drinking seems to have cleared it up without having to resort to antibiotics. I’m also going to try a zinc supplement too, as zinc is known to have an impact on nerve health.

Another part of your blog that I loved was your piece about the “go-girl” device. As a trans-man, being able to pee standing up is a big “thing,” and I’ve tried similar devices before. Over here we have one called the “She-Whizz” which is sold in camping/outdoor sports stores. Why do these things always have such terrible puns for names?  Unfortunately I never found one that didn’t leak out the back if you’re not very careful to pee very, very slowly, so I quickly gave up that idea.

Now I’m using catheters I find standing to pee much easier, in fact trying to do it sitting down is near-impossible so I always stand now. I will even use a public urinal sometimes, if no-one else is in there when I start. I use the Va-Pro Advance catheter which has a protective sleeve so that no part of the actual catheter is exposed before insertion. The intention being to reduce any chance of infection. It’s also about 4″ longer than a standard female catheter; this means that I can guide it in with my fingers more easily and I’ve mastered the art of inserting it through the fly of my pants/underpants, even when wearing a pad or nappy  (provided that it’s dry), without having to pull it all down to my knees. So there’s at least one bonus to having a neurogenic bladder, for me.

Anyway, I just wanted to say again that I love your blog, I find it very entertaining and informative and I really hope you keep writing regularly.

Dear Trudy,

People having bladder and bowel difficulties is ridiculously stigmatized. I’ve rarely spoken about it, I could count the people I’ve told (other than doctors) on one hand. I don’t plan on spreading the word about my neurogenic bladder to everyone I know, but I am seriously thinking about making some videos explaining my struggle.

I had a stroke 11 years ago that wreaked major havoc on some functions of my nether regions. The incontinence has improved a bit on its own, and I’ve learned strategies to keep myself a little drier. But at the same time, the leakiness level varies. There are days to weeks (!) that my faithful ultra-thin stay pretty dry, with just a little dampness at the end of the day. Other times, I’m changing that pad 3 times a day (sometimes my underwear and bottoms with it). Sometimes I can “hold it” and other times the urge/spasm is so strong my muscles do no good. I’ve never had to cath, but I did have problems emptying occasionally. I’ve tried medications, timed voids, biofeedback, nothing really worked. I’m young. I’m 34 now, and this started when I was 23.

For the last decade I have worn pads and elastic waist pants most of the time. Without both of them I’m afraid I might not be able to make it to the bathroom in time when my bladder wants a little exercise (spasm). Often I DIDN’T make it in time. I’ve wet myself countless times, soaked right through the pad. Many times I’ll walk up to my door, and as I put the key in I feel my bladder hollering. “Hey! Hey you! Time to go!” The urgency is so bad I’m holding my self-doing the pee pee dance. Despite this, I don’t make it across the living room without urine running over the pad’s capacity, down my leg and often leaving little puddles.

ONE OF THE MANY REASONS I LIKE TILE FLOORS IN MY HOME.

When I finally make it to the bathroom, after attempting to walk with my bad balance and crazy leg (I have gait problems also, and walking and bladder spasms don’t mix well in my book), sometimes I piss like a racehorse. And sometimes my bladder is like “oh, what was the rush? I already went. You should change your pants and clean up with a wet towel.” Thanks a lot.

Right now I’m on the fence about putting a pacemaker in my butt or getting something that includes the word toxin injected onto the aforementioned nether regions. Not too excited about either of those, but I’ve exhausted other options. I have an interstim stage 1 scheduled in a week, and the more I read and think about it, the more I want to cancel. There’s just too many things that can go wrong there that don’t have much to do with the actual surgery. If that makes any sense.

I appreciate the humor and candidness of your blog, it’s definitely the first one on the topic that I really enjoyed. I don’t see why this page doesn’t have more likes. Wish me luck, and I hope to talk to ya soon.